FTD is a horrible disease, there is no doubt about it. How do you decide what is the worst aspect of FTD. Today, the worst thing about FTD, to me anyway, is that it is a thief. It eventually steals everything, including our lives.
This is Halloween week. Here where I live, Trick or Treating for the children. Yes, I know it isn't Halloween yet. I was flabbergasted when we moved here and learned that it was always on the Thursday before Halloween, even if Halloween is on a Thursday. The children still enjoy it, I am sure, but what do they do on October 31st, I wonder?
Halloween, years ago, was a holiday that I looked forward to for months. I decorated my house, inside and out. I baked cookies and made caramel apples. I sewed my daughter's costumes. We made her into a Sleeping Beauty, a Rainbow Brite Doll, a Karate Kid and so many more. Sometimes, I could con her dad into taking her from house to house so that I could stay home to greet all the other kids. I loved seeing and talking with every one of them. In some of the places we have lived, we would have over 100 visitors. I was in Halloween Heaven!
Then FTD entered my life and ruined it for me. It has worsened every year to the point that last night, I didn't even want to open the door. Someone would knock and I cringed. I did succeed in opening the door and handing out candy, but I could not care less about how they were dressed, how cute or how scary they were. I was unable to communicate with the kids at all, just handed them a handful of candy. I had not even put up decorations nor carved pumpkins to put on the porch.
One young family came to the door... mom, dad and a little girl dressed up like a lion. I will say she looked adorable, especially her lion's mane. No scary lion was she! We had not met these parents before because they recently moved into a house at the other end of the street. They introduced themselves as Zach and whatever his wife's name was. I only remember the Zach part because I knew that was the name of my niece's cousin who I knew had moved into the neighborhood recently. So I asked him if that was his last name. They kept talking, talking and talking about themselves, their house, their family and even told us about the trip they made to Florida to visit my niece, his cousin. I was expected to remember all the people they talked about and follow their stories. Obviously, I could not even remember the wife's name!
I was stressed to my absolute limit. I wanted to close the door, lock it, turn off the lights and cry. It was too much, the little girl was squirming and trying to talk to her parents at the same time they were talking to me. The parents were telling me way more information than I could comprehend. We probably only chatted for ten or fifteen minutes, but it was too much after the first minute. Just answering the door and handing out candy to all the kids was too much for me. I wanted to slam the door in their faces. I wanted to scream at everyone to just go away.
The pathetic part of this is that we only had three trick-or-treaters the entire time. Yes, only three yet it proved too much for me. I spent the entire time getting more and more stressed. I managed to have it totally quiet in the house but that only helped a little because I was on edge, fearing another knock. Kids are only allowed two hours of trick or treating here which doesn't seem that long, but after the first hour, I was done in. I put a basket of candy out on the porch and locked the door. My fists were clenched, my jaw was aching from clenching, to the point that I still had a headache the next day and I was rocking back and forth trying to comfort myself. No candy was taken from the bowl, so I don't think there were anymore visitors which helps me feel a little bit better that I had not shut anyone out.
Three kids and three sets of parents. Who would have thought that FTD would turn me into such a state that I could not enjoy just that little bit of the holiday I used to love. Once I had calmed down, I was angry! I hope and pray that I never reach the same point with Christmas. I am afraid that would totally destroy me.
All I could think was how much I hated FTD and what it does to us, how it can steal all the pleasures from our lives. I am sure that everyone with FTD would be able to create a long list of what pleasures that the disease has robbed them of, how many events they have had to miss and things they can no longer do or enjoy.
So many with FTD had so many things stolen, such as the hobbies they used to enjoy, going for walks and so many other things that we used to take for granted. I get angry when I try to watch a movie and have to walk away half way through because I can not focus on anything for more that 45 minutes or so. If it were not for DVR's, I would not be able to watch TV shows either. If I watch a 60 minute television program and skip all the commercials, it ends up being right at my limit. Some days, though, I cannot even concentrate for that long. I certainly cannot watch more than one a day.
I know I have complained before about the resentment I have toward FTD because I cannot read like I used to. I am actually fortunate that I can read at all, but I can only read novels with no complex plots, too many characters or too much of anything. The good part is that I save a lot of money on e-books because after three months or so, I can reread them without remembering the plots. The books I read are probably at a junior high level. That really hurts.
I hate that FTD has stolen my artistic abilities. I have probably complained about this before as well. I used to be an artist, an award winning artist in fact. I used to make money by decorating cakes, even did a few wedding cakes. I did one about six months ago and it wasn't even at the level I could do before I learned how to decorate cakes.
I really hate that FTD has stolen my ability to interact with others. I cannot carry on conversations with people I don't know or more than one or two people at a time. I get too stressed and actually have had panic attacks. If you have seen me at the AFTD conference, you have seen me how I used to be. You couldn't shut me up whether you were a close friend or a stranger. At the conference, I know I will not be judged if I say the wrong thing or sound like an idiot or take to long to get my words out. It is such a non-threatening and welcoming environment that I talk to everyone practically non-stop. My daughter is amazed at the difference in me between the conferences and my every day life.
I hate that FTD has stolen my ability to look normal, to not stumble and stagger when walking, making people think I have been drinking. One time, I was entering a bar/restaurant when I fell right there in the doorway. Several people came running to help, asking if I was okay, could they do anything. Embarrassed, I finally got myself up and tried again to walk into the building. I fell again and ended up sprawled all over the floor. That time, no one came to help, they looked at me like I was a drunk. When I finally got up, I realized there was just a tiny step, probably less than one inch. With my loss of peripheral vision, I could not see that little rise and that is that was what was tripping me.
I cannot go without mentioning the absolute anger and frustration most FTDers have when we are told, or realize on our own, that we can no longer drive. We lose our freedom and independence. We lose the privilege of just picking up and going out to eat, shopping, visiting, etc.
I hate FTD because it has stolen some of the appreciation others had for me. It is so very frustrating that this is almost an invisible disease. People look at us and think we are still the same person we were before. Then don't see any physical symptoms. Perhaps if FTD game us a big flashing sign on the top of our heads proclaiming the disease, they might recognize that we are fighting a disease. Probably not though, they would just look and think we were trying to get attention.
Bottom line, I hate FTD, with a passion. Hate it, hate it, hate it. It has stolen so many things in life that I used to take for granted and never dreamed that I would end up having those abilities stolen from me.
Finally, back to the holiday issue. To caregivers and those who love someone with FTD, please talk to them and ask what you can do to help the holidays be more tolerable for them. If my husband were capable, I would have asked him to answer the door. There are probably things you can do to help your loved one cope with events and holidays. It is also a good idea to watch them for signs of stress and discomfort before it becomes too much to handle. Like we often say, please try to step into their world and look at things the way they do. See how FTD limits them and their enjoyment and what you can do to help. Everyone deserves some enjoyment in their life, even those of us with FTD.
Saturday, October 27, 2018
Saturday, October 20, 2018
Eye Issues with FTD
Lately, I have been repeatedly asked about what effect FTD can have on the eyes. The answer to this question varies greatly depending on whom you ask. As you read this, please bear in mind that I have no medical training. I have, however, read an awful lot about how the eyes work and about different diseases of the eye. I have had diseases of the eyes for about 30 years now and that is why my avid interest in the subject. Much of my knowledge has also come from the many eye specialists that I have seen in many clinics across the country.
For me, one of the most interesting thing related to FTD and the eyes is research that is being conducted regarding early detection of FTD through images of the retina. In the research, retinal degeneration possibly can detect FTD before the patient experiences and clinical symptoms.
The retina is often called "the window to the brain" because it is made up of neurons that directly connect to the brain. Researchers have noted a significant decrease in cell activity in the retina of dementia patients. Much of the research, but not all, has been limited to the genetic form of FTD so far.
So, if early detection is possible through the retina, it seems possible that the retina could be the cause of eye problems in FTD. Each eye has its own retina and they each send their images to the Occipital lobe, located in the back of the brain. That is the end of the retina's job. Your eyes each see their own image and each sees approximately 3/4 of the image the eyes are seeing. It is up to the brain to overlay the two images into one image. It is up to the other areas of the brain to interpret those images. Much of this interpretation is done by the temporal lobes.
If the two images transmitted from the retinas are not interpreted by the brain properly, the images may causes many symptoms, including double vision. Double vision is a very troubling symptom to many with FTD.
Quite often in FTD, those who complain about blurry vision are actually experiencing a small amount of double vision. It is suggested to test this yourself by covering one eye at a time and determining if the vision is blurry in just one eye or only when you look through both. If both eyes, by themselves, are not blurry, the cause of the blurry vision is quite possibly a case of double vision.
In some cases, the double vision can be extreme. Instead of appearing as blurry vision, the patient may see two distinct images. This can be quite troublesome in many ways. For instance, when travelling in a car, I see two images of cars coming toward us. One of them appears to be in our lane which causes me to become frightened and I often distract the driver by my reactions.
Along with the double vision, there can be other differences in the image from each eye. For some, if you cover one eye at a time, you can often tell that one image is larger than the other. It can also reveal a different in color intensity and/or a difference in depth. This depth perception can be troublesome in itself.
Now, I would be negligent if I did not mention that there is no way for corrective lenses to correct these vision issues. For most people, double vision can be corrected with prism lenses to bring the two images together. In FTD, the two images fluctuate constantly. The prism lenses may help intermittently, but they can make it worse the rest of the time. I mention this because many optometrists will suggest this and, with the costs of glasses, it can become a huge waste of an investment.
The easiest way to explain why our double vision issues are different because of our FTD is to explain that it is the brain seeing double, not the eyes themselves. In the case of non-FTD patients, the cause for double vision is quite often muscular issues with the eyes. Not so for us.
Poor vision can also affect those with dementia with the loss or restriction of peripheral vision. Let me tell you, I am a terror in the grocery store because I cannot see other people or their carts until I am right up to them, usually bumping into them. I read that the loss of peripheral vision can also add to difficulties dementia patients experience eating. In the late stages, when they are needing to be fed, they don't see the food or utensil until it is right at their mouth and it scares them. This is also part of the issue of FTD patients being afraid of the shower. They cannot see the water until it hits them. Many experts will tell you that when approaching a dementia patient, approach from the front, not the back or sides because they can't see you and will be startled.
There are other things too. For instance, double vision can rapidly tire the eyes and lead to horrific headaches. Add that to the already existing problem of FTD headaches and you have a real mess. Eye strain is an issue as well. I can only watch television for short intervals, about 45 minutes. The only way to continue after that is to cover my left eye (which in addition to double vision has a huge blind spot) because the right is strongest and finish watching with one eye. I can't do that for very long either.
Fortunately, at least for me, the double vision gets worse with distance so I am still able to read and do things on the computer
The other thing I advise for those with FTD is, when you are wanting to have your eyes checked, please see an Ophthalmologist (preferably one who is quite knowledgeable about retina issues) and not an Optometrist. I have always found that Optometrists are the best when you are needed corrective lenses, but for diseases of the eye, always an Ophthalmologist.
I am probably forgetting some of the issues with FTD and vision, but this is certainly enough information for one blog. Again, please remember that I have no medical training and that if you have questions about your eyes, please see a professional!
For me, one of the most interesting thing related to FTD and the eyes is research that is being conducted regarding early detection of FTD through images of the retina. In the research, retinal degeneration possibly can detect FTD before the patient experiences and clinical symptoms.
The retina is often called "the window to the brain" because it is made up of neurons that directly connect to the brain. Researchers have noted a significant decrease in cell activity in the retina of dementia patients. Much of the research, but not all, has been limited to the genetic form of FTD so far.
So, if early detection is possible through the retina, it seems possible that the retina could be the cause of eye problems in FTD. Each eye has its own retina and they each send their images to the Occipital lobe, located in the back of the brain. That is the end of the retina's job. Your eyes each see their own image and each sees approximately 3/4 of the image the eyes are seeing. It is up to the brain to overlay the two images into one image. It is up to the other areas of the brain to interpret those images. Much of this interpretation is done by the temporal lobes.
If the two images transmitted from the retinas are not interpreted by the brain properly, the images may causes many symptoms, including double vision. Double vision is a very troubling symptom to many with FTD.
Quite often in FTD, those who complain about blurry vision are actually experiencing a small amount of double vision. It is suggested to test this yourself by covering one eye at a time and determining if the vision is blurry in just one eye or only when you look through both. If both eyes, by themselves, are not blurry, the cause of the blurry vision is quite possibly a case of double vision.
In some cases, the double vision can be extreme. Instead of appearing as blurry vision, the patient may see two distinct images. This can be quite troublesome in many ways. For instance, when travelling in a car, I see two images of cars coming toward us. One of them appears to be in our lane which causes me to become frightened and I often distract the driver by my reactions.
Along with the double vision, there can be other differences in the image from each eye. For some, if you cover one eye at a time, you can often tell that one image is larger than the other. It can also reveal a different in color intensity and/or a difference in depth. This depth perception can be troublesome in itself.
Now, I would be negligent if I did not mention that there is no way for corrective lenses to correct these vision issues. For most people, double vision can be corrected with prism lenses to bring the two images together. In FTD, the two images fluctuate constantly. The prism lenses may help intermittently, but they can make it worse the rest of the time. I mention this because many optometrists will suggest this and, with the costs of glasses, it can become a huge waste of an investment.
The easiest way to explain why our double vision issues are different because of our FTD is to explain that it is the brain seeing double, not the eyes themselves. In the case of non-FTD patients, the cause for double vision is quite often muscular issues with the eyes. Not so for us.
Poor vision can also affect those with dementia with the loss or restriction of peripheral vision. Let me tell you, I am a terror in the grocery store because I cannot see other people or their carts until I am right up to them, usually bumping into them. I read that the loss of peripheral vision can also add to difficulties dementia patients experience eating. In the late stages, when they are needing to be fed, they don't see the food or utensil until it is right at their mouth and it scares them. This is also part of the issue of FTD patients being afraid of the shower. They cannot see the water until it hits them. Many experts will tell you that when approaching a dementia patient, approach from the front, not the back or sides because they can't see you and will be startled.
There are other things too. For instance, double vision can rapidly tire the eyes and lead to horrific headaches. Add that to the already existing problem of FTD headaches and you have a real mess. Eye strain is an issue as well. I can only watch television for short intervals, about 45 minutes. The only way to continue after that is to cover my left eye (which in addition to double vision has a huge blind spot) because the right is strongest and finish watching with one eye. I can't do that for very long either.
Fortunately, at least for me, the double vision gets worse with distance so I am still able to read and do things on the computer
The other thing I advise for those with FTD is, when you are wanting to have your eyes checked, please see an Ophthalmologist (preferably one who is quite knowledgeable about retina issues) and not an Optometrist. I have always found that Optometrists are the best when you are needed corrective lenses, but for diseases of the eye, always an Ophthalmologist.
I am probably forgetting some of the issues with FTD and vision, but this is certainly enough information for one blog. Again, please remember that I have no medical training and that if you have questions about your eyes, please see a professional!
Saturday, October 13, 2018
Random Acts of Kindness
I absolutely love acts of kindness. As long as I am on the giving end anyway. I just love bringing a smile to someone's face without having them fuss about "oh, you shouldn't have." I do it because I want to, not because I have to. It just warms my heart to be able to do something.
One time at Bible Study, as Christmas was nearing, an older woman mentioned that no way is she going to put up a tree this year. Several of us offered to go to her house and do it for her. She refused, saying it is too much work for anyone to do. I went home to my craft room and grabbed an artificial 20" tall tree and hot glued some beautiful ribbons and decorations onto it. Later, when I knew she would not be home, I left it between her storm door and front door with a typed note "Everyone needs a little Christmas." The next week, she suspected it was someone from out group and raved about it yet she fussed that someone went to too much trouble for "just" her.
How difficult does something have to be until we think it's not worth bringing a smile to someone's face or a warm feeling in their heart? Does it have to be for a friend or an acquaintance so that you can actually see the smile or can it be for a stranger? I don't need to see the smile, I get all the reward I need when I know I will make their day just a tiny bit better. It just makes my heart smile!
You are probably asking what this has to do with life with FTD. I will once again need to put my caregiver hat on to explain it. My husband, who is in the late stages of Alzheimer's, is home with me again after being in the hospital and rehab center for four weeks. Our Home Nursing Agency has sent a nurse to see him a few times already as well as a physical therapist and an occupational therapist. (On a side note, they scheduled a home health aide to come help him shower. He said he would let the aide help him, as long as he could leave all his clothes on. Obviously, I canceled the aide. I even managed to not laugh in his presence.) Together, we managed to get him showered. I can only think that he believed the aide would get naked and go in the shower with him!
The nurses all suggested that I get him to do some easy things around the house and try to get him outdoors for at least a few minutes a day. It sounded like a good idea, so I tried. I asked him to sweep the leaves off the part of the deck by the sliding door. He agreed, but insisted I come out with him. The next day, I suggested he go out for the mail and newspaper. You guessed it, I had to walk with him because he was afraid to cross the street to the mailbox. Now, that was funny because I am the one with the history of walking out in front of vehicles. I know I want to get to the mailbox, so I just go, forgetting that there are sometimes vehicles, even trucks full of gravel, that speed down our little road. One of the joys of FTD, no impulse control.
The next day, I asked him to unload the dishwasher. He was very willing and quickly put away the coffee mugs and plates. Then he closed the door and said "That's enough, you can do the rest."
I am sure you can imagine that being a caregiver for someone with Alzheimer's is not easy for someone with FTD. In fact, it gets downright difficult. Besides caring for him, I have had to absorb all the household tasks he used to do, even the financial things. Pretty difficult when I struggle to write out a check, often beginning with the date. What month? What year? The check printers are going to love me. I go through a book of checks in almost no time because I have to void so many.
When I was diagnosed with FTD, we had no suspicions that he was developing dementia himself. He doted on me constantly, until I had to ask him to back off, that I was still capable of doing things. He took over filling my pill boxes, doing the grocery shopping once in a while, just everything he could. I did not realize how much he was doing until I had to start doing it all again.
I am sure you are wondering where I am going with random acts of kindness and needing to become a caregiver. I will get there...
When he unloaded the few things from the dishwasher and then saved the rest for me, my immediate reaction was anger. Understandable, I think, because of the strain of being someone with dementia needing to care for someone with worse dementia. It takes every bit of energy I have. So I am very thankful that I bit my tongue and did not say a word. Thank you, impulse control, for showing up for once!
I sat and fumed for a few minutes, then something occurred to me. If this was a stranger or a friend, I would have offered to take over and do it for them, then asked what else I could do for them. I also remembered how much I appreciate it when my sister gives me an arm to lean on when I am walking in a parking lot or crowd. Or, when I keep thanking her for coming over and driving me wherever I need to go. She always says, "That's what sisters do!"
I went even further and remembered a time when I was fussing about having to make a speech. I just didn't want to do it and I was coming up with all kinds of excuses. My husband looked at me and said, "Cindy, if you take all the energy you are using to complain, you could have the speech written and practiced enough that it will be easy for you."
Here I was, using more energy being angry that he could not even empty the dishwasher or do the other simple tasks I was asking him to do. I was angry that every time he went to ride the stair lift that I had someone install before he got home from rehab, he insisted on me following it downstairs and back up to make sure "he did it right." I kept wondering why he was making such a fuss about sitting down and pushing a button to go up or down.
I was reacting to my husband of 45 years so harshly, yet if he was a stranger, I would be just the opposite. It really turned me around. I emptied the rest of the dishwasher and thanked him for doing the part he did. I sat down to fill his pill boxes for the week and was thankful that I am still capable of doing it instead of growling that I had to do it.
Being a caregiver is an extremely difficult job for anyone. I don't want to make it sound like it is only difficult for me because I have FTD. Of course it does complicate the situation. I do believe that many caregivers fall into the same trap I did. They complain about all the things they have to do. They completely take over because it is easier and much quicker to do it themselves than to have their loved one attempt to do it first. I now find that I am able to ask him to do something because I realize that redoing it after he does it won't take any longer than doing it first and it just might make him feel like he is contributing something.
My attitude has changed. I am still exhausted, but I am not tied up in knots of resentment at the same time. This morning, it was was only 60 degrees in our house. The outside temp had really dropped overnight. When I realized in the middle of the night how cold it was in the house, I pulled up the comforter. When he felt the cold, it did not even occur to him to pull up his comforter. I broke down and turned on the furnace, then returned to his room, crawled into his bed, snuggled up with him and said I would give him some of my warmth. He quickly stopped shivering and actually drifted off to sleep again.
I learned from this. I realized that he does need my warmth to keep him comfortable. It is not always nearly as easy as turning on the heat and snuggling. This is only a vivid example to me that he needs my support to make him more comfortable dealing with his new difficulties in doing anything and everything.
I also realized that it had been a long time since I had the opportunity to snuggle up to him. I warmed him up, but it warmed my heart just as well. I need to remember that feeling and keep in mind that everything I am doing for him is a (not so) random act of kindness.
Sunday, October 7, 2018
We All Fight Together
A huge "thank you" to all who have come back after my month-long absence from blogging. As I said in my last Blog, caring my husband who has Alzheimer's Disease had taken a turn for the worse. Yes, it is a full-time challenge for me as it is for all caregivers. I simply had no energy left to think, much less blog.
What I did manage to do was kick off a campaign to sell "I Am Fighting FTD" ballcaps and then shirts. I was doing this as a fundraiser for the AFTD during their "Food for Thought" fundraising campaign.
I am not trying to sell them here. I merely mention it because on the shirts that I designed, part of the message on the back is "We All Fight Together." At the time I designed the shirts, that phrase jumped out at me because together, we are a mighty force to fight against FTD. We all stand together to push for research, assistance for those with FTD and/or caring for someone with FTD and to educate the world that FTD even exists.
This mighty force I refer to has to involve all of us and we must all be committed to the same cause. Not all of us can climb up on a soapbox and speak out to anyone who will listen. Interestingly enough, I could not have done that before FTD, but now I can and I do. However, every one of us is part of the force in someway. Even when it is correcting people every time they assume that what we have is Alzheimer's Disease or make stupid remarks like "You look fine to me."
When I was first diagnosed with FTD, I was lucky to immediately find the AFTD and have relied on them ever since. I try to repay their efforts and assistance by doing what I can to raise money and spread the word about FTD. More so the second. I can comfortably say that I have educated a lot of people about FTD, whether they wanted to be or not! Because FTD quickly robs most of us of financial resources, it is difficult to monetarily support any organizations. That is why I use my remaining talents to support the AFTD since my finances are limited.
The AFTD is not the only organization out there supporting the fight against FTD, there are others. I apologize that I cannot remember all of them, but they are are fighting FTD in their own way. Some that come to mind is PSP.org, Dementia Society of America, Dementia Alliance International, FTDarn and even the Alzheimer's Association. To me, it would be ideal if all the organizations worked together, not to cross purposes. Hopefully, they already do and I just am not privy to that knowledge. I hope that they share information, resources and research findings when possible.
I believe I mentioned, a few months back, that I was serving on Pennsylvania's Task Force for Alzheimer's Disease and Related Dementias. (Yes, that's us, lumped into "related dementias".) I am doing my best to constantly remind the members of the task force that the related disorders are just as important. Trying to be heard is frustrating, believe me. I am also serving on a sub-committee and one of my assignments was to contact many of the different dementia organization to determine what they do and what types of support they offer. I was amazed at how many of the organizations held that information to the vest and were reluctant to share it with me. Of course, it is also possible that my FTD didn't allow me to ask the right questions.
Perhaps I am an idealist in my thinking that all the organizations should assist and rely on each other. My thought is that, ideally, we would have a national registry of all non-profit agencies. Then, when someone receives a diagnosis of any disease, they could make one contact and learn what resources are out there and how to get in touch with them. For instance, I did not know that the Alzheimers Association supports those with FTD and other dementias. Unfortunately, seeing how this national registry would most likely be done by a government agency, I probably am indeed an idealist.
There is more to the "We All Fight Together" expression I put on the shirts. It is for everyone of us. If we are members of or supporters of one organization, that does not mean that all of our support has to be limited to one organization. Each organization has its own principles and purpose. Yes, it is up to us to research and learn about each organization ourselves before we chose whom to be assiciated with, but it doesn't have to be just one.
I would be negligent to not mention that it might be better to focus on a small number. If we spread ourselves and our support too thin, we become less effective due to our limited resources of time and energy. At least that is very true for me.
Fighting together applies to support groups as well, at least in my mind. Some groups are limited to those with the diagnosis, some to family members, some to caregivers and probably many more. It my experience, it is the open groups that sometimes get people taking sides. It's worse for patients... no worse for caregivers.... no worse for...
We all have to fight this disease together, not push against each other. We can all learn if we listen and don't immediately dismiss opposing opinions. If you read my blog regularly, you probably know that I suffer from the paranoia that FTD often brings us, so take that into consideration when reading my next statement. Quite often, when I am on the joint support groups, I feel my opinion is totally dismissed because I am not a caregiver so I cannot understand. Of course I am a caregiver, but I would like to think I would understand the caregiver's problems even if I were not.
There is so much benefit by listening to all sides of a situation. These open support groups are not the perfect place to be writing about how horrible those with FTD can be. We already know we can be. We also do not need to hear how much we are resented and, in some cases, hated. It's not the place for those of us with the disease to be criticizing all caregivers. Those comments need to be in a more private forum so that we can, indeed, fight together, not against each other.
After reading back over what I have written so far, I do realize it is coming across as a lecture. That is certainly not my objective. During the past month, I have observed many upsetting situation, not just online, but in the hospital, in the nursing home and even with the Home Nursing Agency who is providing some help for my husband adapt to home life once again. I hope my husband was not aware of these careless and thoughtless comments and actions, but my sister and I certainly did. They brought all these issues to mind.
When I added the "We All Fight Together" to the shirts, I was not aware of why it jumped out at me. As life progressed through the past month, it became obvious that there was indeed a reason.
Thank you for bearing with me... and I promise not to lecture next week. It's good to be back...
What I did manage to do was kick off a campaign to sell "I Am Fighting FTD" ballcaps and then shirts. I was doing this as a fundraiser for the AFTD during their "Food for Thought" fundraising campaign.
I am not trying to sell them here. I merely mention it because on the shirts that I designed, part of the message on the back is "We All Fight Together." At the time I designed the shirts, that phrase jumped out at me because together, we are a mighty force to fight against FTD. We all stand together to push for research, assistance for those with FTD and/or caring for someone with FTD and to educate the world that FTD even exists.
This mighty force I refer to has to involve all of us and we must all be committed to the same cause. Not all of us can climb up on a soapbox and speak out to anyone who will listen. Interestingly enough, I could not have done that before FTD, but now I can and I do. However, every one of us is part of the force in someway. Even when it is correcting people every time they assume that what we have is Alzheimer's Disease or make stupid remarks like "You look fine to me."
When I was first diagnosed with FTD, I was lucky to immediately find the AFTD and have relied on them ever since. I try to repay their efforts and assistance by doing what I can to raise money and spread the word about FTD. More so the second. I can comfortably say that I have educated a lot of people about FTD, whether they wanted to be or not! Because FTD quickly robs most of us of financial resources, it is difficult to monetarily support any organizations. That is why I use my remaining talents to support the AFTD since my finances are limited.
The AFTD is not the only organization out there supporting the fight against FTD, there are others. I apologize that I cannot remember all of them, but they are are fighting FTD in their own way. Some that come to mind is PSP.org, Dementia Society of America, Dementia Alliance International, FTDarn and even the Alzheimer's Association. To me, it would be ideal if all the organizations worked together, not to cross purposes. Hopefully, they already do and I just am not privy to that knowledge. I hope that they share information, resources and research findings when possible.
I believe I mentioned, a few months back, that I was serving on Pennsylvania's Task Force for Alzheimer's Disease and Related Dementias. (Yes, that's us, lumped into "related dementias".) I am doing my best to constantly remind the members of the task force that the related disorders are just as important. Trying to be heard is frustrating, believe me. I am also serving on a sub-committee and one of my assignments was to contact many of the different dementia organization to determine what they do and what types of support they offer. I was amazed at how many of the organizations held that information to the vest and were reluctant to share it with me. Of course, it is also possible that my FTD didn't allow me to ask the right questions.
Perhaps I am an idealist in my thinking that all the organizations should assist and rely on each other. My thought is that, ideally, we would have a national registry of all non-profit agencies. Then, when someone receives a diagnosis of any disease, they could make one contact and learn what resources are out there and how to get in touch with them. For instance, I did not know that the Alzheimers Association supports those with FTD and other dementias. Unfortunately, seeing how this national registry would most likely be done by a government agency, I probably am indeed an idealist.
There is more to the "We All Fight Together" expression I put on the shirts. It is for everyone of us. If we are members of or supporters of one organization, that does not mean that all of our support has to be limited to one organization. Each organization has its own principles and purpose. Yes, it is up to us to research and learn about each organization ourselves before we chose whom to be assiciated with, but it doesn't have to be just one.
I would be negligent to not mention that it might be better to focus on a small number. If we spread ourselves and our support too thin, we become less effective due to our limited resources of time and energy. At least that is very true for me.
Fighting together applies to support groups as well, at least in my mind. Some groups are limited to those with the diagnosis, some to family members, some to caregivers and probably many more. It my experience, it is the open groups that sometimes get people taking sides. It's worse for patients... no worse for caregivers.... no worse for...
We all have to fight this disease together, not push against each other. We can all learn if we listen and don't immediately dismiss opposing opinions. If you read my blog regularly, you probably know that I suffer from the paranoia that FTD often brings us, so take that into consideration when reading my next statement. Quite often, when I am on the joint support groups, I feel my opinion is totally dismissed because I am not a caregiver so I cannot understand. Of course I am a caregiver, but I would like to think I would understand the caregiver's problems even if I were not.
There is so much benefit by listening to all sides of a situation. These open support groups are not the perfect place to be writing about how horrible those with FTD can be. We already know we can be. We also do not need to hear how much we are resented and, in some cases, hated. It's not the place for those of us with the disease to be criticizing all caregivers. Those comments need to be in a more private forum so that we can, indeed, fight together, not against each other.
After reading back over what I have written so far, I do realize it is coming across as a lecture. That is certainly not my objective. During the past month, I have observed many upsetting situation, not just online, but in the hospital, in the nursing home and even with the Home Nursing Agency who is providing some help for my husband adapt to home life once again. I hope my husband was not aware of these careless and thoughtless comments and actions, but my sister and I certainly did. They brought all these issues to mind.
When I added the "We All Fight Together" to the shirts, I was not aware of why it jumped out at me. As life progressed through the past month, it became obvious that there was indeed a reason.
Thank you for bearing with me... and I promise not to lecture next week. It's good to be back...
Saturday, September 15, 2018
FTD Makes Everything Worse
I don't know if anyone noticed that I did not write a blog entry last week. I hope at least one or two people missed me.
I had no energy to write last weekend. My husband's Alzheimer's Disease worsened significantly. He was more confused and was not walking much at all. We had to start him wearing pull-ups because he was unable to get himself to the bathroom. He was waking me every hour or two because he could not get comfortable in bed. I was having to try to lift him which was nearly impossible. He would become totally rigid and could not help at all. I no longer have the strength I used to, but I'm not sure I could have ever lifted him in that condition even before FTD. Add in the confusion of FTD, I could not even figure out which way to move him when he would say he wanted to be further up on his pillow. It never even occurred to me to simply move the pillow.
On Monday, his condition was serious enough, my sister and brother in law helped me take him to the hospital. That was an adventure in itself. Here was this man, drooping in a wheelchair, not being able to speak much and totally confused. Yet we waited three hours until he was seen. Then we waited five more hours until they moved him out of the emergency room. The hospital was low on rooms so they decided he could go to an observation room.
The problem of being in an observation room is that Medicare and other insurances consider observation an outpatient situation. That means that for the CAT scan and MRI of his brain will cost us $500 each as a copay. If he was in a regular patient room, both would have been covered under his hospital stay. I hope those are the only two surprises.
There are so many problems with not only medicine today, but with hospitals and insurance companies. The entire stay was extremely frustrating because an observation unit is not equipped for the needs his condition warranted. Of course the staff got just as frustrated as I did. I had to argue with doctors who actually knew less about dementia than I do.
I have still been unable to get a report on the brain scans. I had an appointment with our family doctor on Friday and she was livid that she had not received them either. In this day of electronic records, she should have had access to his entire hospital stay but did not.
The next problem cropped up on Wednesday when the hospital wanted to send him off to rehab. We happen to have a fantastic rehab hospital in our town and I had no qualms about sending him there, knowing he would get better care than he was receiving at the hospital. I should not have been surprised when the insurance company denied the transfer. (Just today I received my copy of the denial and their reasoning was that his condition did not warrant it.) The next recommendation by the hospital was to transfer him to a nursing home that offers rehab treatment. He ended up being sent there and is receiving one rehab session a day. If he had been in the rehab hospital, it would have been three sessions a day for a total of five hours.
Don't get me wrong, he is being treated very well in this nursing home and is making progress. My grievance is that this decision was dictated by some clerk sitting in an office at the insurance company who was looking at his medical record and made this decision. They did not discuss it with hospital personnel, much less a consultation with the family. This seems so wrong to me.
Let me get back to FTD now. My limitation from FTD contributed to him needing to go to the hospital in the first place. Then, sitting for that length of time in the ER waiting area was extremely difficult... televisions blaring, people talking, children crying. I was out of control. I finally knocked on the door to the triage area (He had been through there soon after we had arrived.) I explained to the triage nurse how long we had been there and that his condition was worsening as we sat there. I finally asked her (not very politely) if she wanted him to die in the waiting room or if we should take him home to die. Not nice of me, but he was seen within ten minutes. I should also add that throughout this entire period of waiting, the patient advocate kept coming to us and assuring us he was at the highest trauma level and would be seen as soon as possible.
Morale of that story is "Don't stress someone with FTD, you can never tell what they might do or say!"
By time they took him to a room in the ER, I was totally exhausted, could not speak at all without stuttering, had a horrid FTD headache and was crying out of frustration. It didn't get much better for the next two days. He was calling me every two to three hours throughout the entire night. The third day, I knew he was getting better when I begged him to please not call me that night and explained how I needed some sleep. I did not receive a call until 7:45 a.m. and it was the nurse, not him. I was so relieved that he had actually comprehended what I was begging for.
I felt extreme guilt about not spending the entirety of each day there at the hospital with him and for not wanting to answer his calls. I knew he was just as frightened as I was, but I just could not deal with things on the small amount of sleep I was getting. Anyone with FTD who is reading this will understand. We need more sleep so that our brains can rest. Our brains seem to need more than our bodies do.
I also feel guilty because I am very angry with him. Two years ago, when I was frequently falling down the stairs, I begged him to have a stair lift installed. He refused, thinking that $3600 was too much and that I just needed to be more careful. I'm sure you guessed it already, I am having one installed for him in a couple days, before he comes home. I also purchased a rolling walker for him and a few other items to make the house easier for him to live in. A rolling walker is another thing that he refused to purchase for me. The anger level of someone with FTD can be downright frightening so that compounds my guilty feelings.
I have written so many times about the importance of a support team as well as the frustrations involved in not having one. So many of us have experienced our friends and family members running away in droves. I swear they must think dementia is contagious. My support system consists of my sister and her husband. They have been phenomenally supportive. She has been my chauffeur and has shown the patience of a saint with both my husband and me. Her husband spent his entire day on Monday with us at the hospital and kept us supplied with snacks and drinks. Wouldn't you think that the hospital, if they are keeping you waiting for that many hours, would at least offer a bottle of water? He also came over to the house and did a couple tasks that were too overwhelming for me right now. Plus, he did not complain about how much time my sister was devoting to me. Best brother in law ever! Best sister as well!
Now, after I have you screaming that I need to take care of myself if I plan to be able to care for him at all, I am finally listening. I left the nursing home at 2:30 this afternoon, which is Saturday, and do not plan on returning until midday on Monday. He is in the dementia unit at the nursing home so he does not have a phone in his room. I plan on sleeping and sleeping and sleeping.
I also asked our family doctor if she would order home nursing visits after he gets home and she immediately said she definitely would. So, if the insurance company has any compassion at all, I will have at least some help.
When I was diagnosed with FTD, it never occurred to me just how much it would impact every single thing in my life, nor how much difficulty my life would have over and above dealing with my own dementia. FTD controls our lives, impacts everything in them and can make us miserable without even trying. I hate this damned disease. I don't like Alzheimer's Disease and better either.
I had no energy to write last weekend. My husband's Alzheimer's Disease worsened significantly. He was more confused and was not walking much at all. We had to start him wearing pull-ups because he was unable to get himself to the bathroom. He was waking me every hour or two because he could not get comfortable in bed. I was having to try to lift him which was nearly impossible. He would become totally rigid and could not help at all. I no longer have the strength I used to, but I'm not sure I could have ever lifted him in that condition even before FTD. Add in the confusion of FTD, I could not even figure out which way to move him when he would say he wanted to be further up on his pillow. It never even occurred to me to simply move the pillow.
On Monday, his condition was serious enough, my sister and brother in law helped me take him to the hospital. That was an adventure in itself. Here was this man, drooping in a wheelchair, not being able to speak much and totally confused. Yet we waited three hours until he was seen. Then we waited five more hours until they moved him out of the emergency room. The hospital was low on rooms so they decided he could go to an observation room.
The problem of being in an observation room is that Medicare and other insurances consider observation an outpatient situation. That means that for the CAT scan and MRI of his brain will cost us $500 each as a copay. If he was in a regular patient room, both would have been covered under his hospital stay. I hope those are the only two surprises.
There are so many problems with not only medicine today, but with hospitals and insurance companies. The entire stay was extremely frustrating because an observation unit is not equipped for the needs his condition warranted. Of course the staff got just as frustrated as I did. I had to argue with doctors who actually knew less about dementia than I do.
I have still been unable to get a report on the brain scans. I had an appointment with our family doctor on Friday and she was livid that she had not received them either. In this day of electronic records, she should have had access to his entire hospital stay but did not.
The next problem cropped up on Wednesday when the hospital wanted to send him off to rehab. We happen to have a fantastic rehab hospital in our town and I had no qualms about sending him there, knowing he would get better care than he was receiving at the hospital. I should not have been surprised when the insurance company denied the transfer. (Just today I received my copy of the denial and their reasoning was that his condition did not warrant it.) The next recommendation by the hospital was to transfer him to a nursing home that offers rehab treatment. He ended up being sent there and is receiving one rehab session a day. If he had been in the rehab hospital, it would have been three sessions a day for a total of five hours.
Don't get me wrong, he is being treated very well in this nursing home and is making progress. My grievance is that this decision was dictated by some clerk sitting in an office at the insurance company who was looking at his medical record and made this decision. They did not discuss it with hospital personnel, much less a consultation with the family. This seems so wrong to me.
Let me get back to FTD now. My limitation from FTD contributed to him needing to go to the hospital in the first place. Then, sitting for that length of time in the ER waiting area was extremely difficult... televisions blaring, people talking, children crying. I was out of control. I finally knocked on the door to the triage area (He had been through there soon after we had arrived.) I explained to the triage nurse how long we had been there and that his condition was worsening as we sat there. I finally asked her (not very politely) if she wanted him to die in the waiting room or if we should take him home to die. Not nice of me, but he was seen within ten minutes. I should also add that throughout this entire period of waiting, the patient advocate kept coming to us and assuring us he was at the highest trauma level and would be seen as soon as possible.
Morale of that story is "Don't stress someone with FTD, you can never tell what they might do or say!"
By time they took him to a room in the ER, I was totally exhausted, could not speak at all without stuttering, had a horrid FTD headache and was crying out of frustration. It didn't get much better for the next two days. He was calling me every two to three hours throughout the entire night. The third day, I knew he was getting better when I begged him to please not call me that night and explained how I needed some sleep. I did not receive a call until 7:45 a.m. and it was the nurse, not him. I was so relieved that he had actually comprehended what I was begging for.
I felt extreme guilt about not spending the entirety of each day there at the hospital with him and for not wanting to answer his calls. I knew he was just as frightened as I was, but I just could not deal with things on the small amount of sleep I was getting. Anyone with FTD who is reading this will understand. We need more sleep so that our brains can rest. Our brains seem to need more than our bodies do.
I also feel guilty because I am very angry with him. Two years ago, when I was frequently falling down the stairs, I begged him to have a stair lift installed. He refused, thinking that $3600 was too much and that I just needed to be more careful. I'm sure you guessed it already, I am having one installed for him in a couple days, before he comes home. I also purchased a rolling walker for him and a few other items to make the house easier for him to live in. A rolling walker is another thing that he refused to purchase for me. The anger level of someone with FTD can be downright frightening so that compounds my guilty feelings.
I have written so many times about the importance of a support team as well as the frustrations involved in not having one. So many of us have experienced our friends and family members running away in droves. I swear they must think dementia is contagious. My support system consists of my sister and her husband. They have been phenomenally supportive. She has been my chauffeur and has shown the patience of a saint with both my husband and me. Her husband spent his entire day on Monday with us at the hospital and kept us supplied with snacks and drinks. Wouldn't you think that the hospital, if they are keeping you waiting for that many hours, would at least offer a bottle of water? He also came over to the house and did a couple tasks that were too overwhelming for me right now. Plus, he did not complain about how much time my sister was devoting to me. Best brother in law ever! Best sister as well!
Now, after I have you screaming that I need to take care of myself if I plan to be able to care for him at all, I am finally listening. I left the nursing home at 2:30 this afternoon, which is Saturday, and do not plan on returning until midday on Monday. He is in the dementia unit at the nursing home so he does not have a phone in his room. I plan on sleeping and sleeping and sleeping.
I also asked our family doctor if she would order home nursing visits after he gets home and she immediately said she definitely would. So, if the insurance company has any compassion at all, I will have at least some help.
When I was diagnosed with FTD, it never occurred to me just how much it would impact every single thing in my life, nor how much difficulty my life would have over and above dealing with my own dementia. FTD controls our lives, impacts everything in them and can make us miserable without even trying. I hate this damned disease. I don't like Alzheimer's Disease and better either.
Sunday, September 2, 2018
Toxic People
Another person with FTD, one whom I now consider a friend, asked me if I had ever written a blog about "Toxic People". I looked back through the years of blog entries and did not find one where I specifically used this term. I have, however, written about a lot of people who do become toxic. Many of them I wrote about in a blog back in September of last year. It was titled "Deniers, Disbelievers and Ostriches." Certainly the people I was describing are what are now labeled as toxic people. (https://ftdnoflowers.blogspot.com/2017/09/deniers-disbelievers-and-ostriches.html)
Before I get into this subject, I must remind all the readers that I am not a doctor nor a therapist. I have taken just a few courses in psychology but not nearly enough. I have been blessed with a lot of common sense and powers of observation and that is what I use when I write about life with FTD. Of course I live with my own FTD as well and have been a caregiver for several family members, including my husband at the present time. I also am lucky that my FTD has not stolen my reading ability and I do a lot of that and always have. That said...
I have seen toxic people described as draining, non-supportive and difficult. Those of us with FTD need to be surrounded with as many people as possible who are supportive, understanding, patient and enjoyable to be around. As with most people, we have to learn who are positive people to be around and those who are not.
It is difficult to remove yourself from a person who is toxic to your well being. There are probably a lot of people in all of our lives who were tolerable before our disease but no longer are. This would include people we have know for a long time or have forced themselves into our lives to make themselves feel better. It takes courage and strength to weed these people from your life but your life can be much better without exposure to them.
I had a friend who jumped into my life with both feet when she learned I had FTD. She claimed she knew all about it and understood what I needed. I think that meant she must have read a couple paragraphs about it. She was one of those people who wanted to talk to me every day. Notice I said "talk to" because that is what it amounted to. I used to joke that if I wanted to get her off the phone, I only needed to say something about myself. She also believed she knew everything I should do and would keep badgering me about it. When we were around others, she would answer for me. It took me a long time to shut down this relationship. It came down to my not wanting to hurt her feelings to the detriment of my own. I can not begin to describe the extreme relief it was to have this narcissist out of my life when I finally made the break.
Another person I needed to remove from my life was one who was constantly telling me details about other people in her life. This included many private things that I am sure the other person did not want to be shared. I came to realize that she was more than likely doing the same with everything she knew about my private life.
So, how do you recognize toxic people? I have learned that if I don't look forward to seeing them or hearing from them, there is certainly something about them that is not a positive influence on my life. Another sign can be that you feel worse or totally exhausted after dealing with them than you did going in.
Toxic people are not limited to just friends and acquaintances, They can also be family. It seems there is always at least one person in the family who bulldozes over everyone else. They manage to manipulate situations to make others look bad in order to make themselves the hero or the injured party in the situation. They love to tell everyone else about what you "did to them" when it was all engineered by them. This is truly a person who is toxic to all around them.
One type of situation that immediately comes to mind involves grandparents. Of course it can be other relatives as well, but I see it often with grandparents. The biggest example of this is plain emotional blackmail. "If you want to see your grandchildren you must ..." It can be financial demands, babysitting or anything they want to force the grandparents to do.
When I see this type of emotional blackmail, I get furious. Children are not things to be used as a bargaining chip. Grandparents can be one of the best influences for children. They generally have more time and patience to give them, teaching them and nurturing them in love. I know that, personally, some of the best moments of my life were summers that I spent with my grandparents. I learned so much from them and I think they learned from me. I always knew I was loved even when I was away from them. This was during the time that the term "generation gap" came into play. There was no generation gap in my life. I actually won a competition with my response to the question "What do you think of the generation gap and how can it be fixed?" by explaining that with me as an example, there did not need to be a gap.
One person told me that their children would not allow the grandchildren see their grandparents because "Grandma is too sick for you to go there." Yes, FTD is a disease, but it is not the kind of sickness that was being suggested. I suspect that, in this case, the children had not bothered to learn anything about FTD and equate it with mental illness. I should explain that this grandmother is in earlier stages of FTD and the grandfather is also in the home in case any issues did arise.
Toxic people can also destroy relationships by controlling events. They can make plans with someone and then not show up no matter how much the other person was looking forward to the event. Another way is to have a gathering of family members or friends and not invite the one with FTD. Come on people, we always find out!
Within the last month, there were two weddings I was not invited to. One was a family member and one was a long-time friend. In this day of social media, it's pretty difficult to keep a wedding a secret. I kept waiting for an invitation to each of them, finally realizing it was not coming. The ironic part is that they were both out of town so that I would not have been able to attend anyway. I finally convinced myself to let it go and be happy that there were two wedding gifts I did not need to buy.
Many people with FTD have difficulty speaking. There are subgroups of FTD called PPA, Primary Progressive Aphasia. With this type, thinking of words, speaking words or coming up with the correct words can all become difficult or impossible. Too many people are just not comfortable when trying to communicate with anyone who does not speak well. Others assume that if you can't think of words or say them, that you must be stupid. This is ridiculous, rude and definitely toxic to those with PPA. How difficult is it to slow down, listen with patience and try to understand. You know I have to say it... "Those with FTD have dementia, they don't have stupid." That includes PPA.
You often hear the phrase "you learn who your friends are when...". Yep, you certainly do with FTD. Family members and people you thought were friends seem to disappear. I cannot figure it out. Are they afraid it is contagious? Are they afraid they won't know what to say" Are they afraid we will make demands of them? I doubt that I will ever figure it out. All most of us want is time with family and friends so that we can feel normal for just a little while.
Oh, and one other type of toxic people can be caregivers. Whether they expect too much of us, don't allow us to do things we are capable of doing, try to force us to do things we are not capable of, try to control every second of our day or talk down to us as though we are children, it hurts. The worst thing, in my opinion, that toxic caregivers can do is to talk about us negatively or complain about how difficult their task is when we are right there hearing what is being said. We need to be encouraged, not complained about. Care giving is a tough job, but so is having FTD.
Can those of us with FTD be toxic to others? Probably since we are not that different from everyone else. If we are, it should be remembered that we more than likely can not help being the way we are. We are still fighting the lack of impulse control, empathy and all the other dreadful symptoms of FTD. Most often, we truly cannot control what we are doing. Please treat us with kindness and understanding... Please!!!
Before I get into this subject, I must remind all the readers that I am not a doctor nor a therapist. I have taken just a few courses in psychology but not nearly enough. I have been blessed with a lot of common sense and powers of observation and that is what I use when I write about life with FTD. Of course I live with my own FTD as well and have been a caregiver for several family members, including my husband at the present time. I also am lucky that my FTD has not stolen my reading ability and I do a lot of that and always have. That said...
I have seen toxic people described as draining, non-supportive and difficult. Those of us with FTD need to be surrounded with as many people as possible who are supportive, understanding, patient and enjoyable to be around. As with most people, we have to learn who are positive people to be around and those who are not.
It is difficult to remove yourself from a person who is toxic to your well being. There are probably a lot of people in all of our lives who were tolerable before our disease but no longer are. This would include people we have know for a long time or have forced themselves into our lives to make themselves feel better. It takes courage and strength to weed these people from your life but your life can be much better without exposure to them.
I had a friend who jumped into my life with both feet when she learned I had FTD. She claimed she knew all about it and understood what I needed. I think that meant she must have read a couple paragraphs about it. She was one of those people who wanted to talk to me every day. Notice I said "talk to" because that is what it amounted to. I used to joke that if I wanted to get her off the phone, I only needed to say something about myself. She also believed she knew everything I should do and would keep badgering me about it. When we were around others, she would answer for me. It took me a long time to shut down this relationship. It came down to my not wanting to hurt her feelings to the detriment of my own. I can not begin to describe the extreme relief it was to have this narcissist out of my life when I finally made the break.
Another person I needed to remove from my life was one who was constantly telling me details about other people in her life. This included many private things that I am sure the other person did not want to be shared. I came to realize that she was more than likely doing the same with everything she knew about my private life.
So, how do you recognize toxic people? I have learned that if I don't look forward to seeing them or hearing from them, there is certainly something about them that is not a positive influence on my life. Another sign can be that you feel worse or totally exhausted after dealing with them than you did going in.
Toxic people are not limited to just friends and acquaintances, They can also be family. It seems there is always at least one person in the family who bulldozes over everyone else. They manage to manipulate situations to make others look bad in order to make themselves the hero or the injured party in the situation. They love to tell everyone else about what you "did to them" when it was all engineered by them. This is truly a person who is toxic to all around them.
One type of situation that immediately comes to mind involves grandparents. Of course it can be other relatives as well, but I see it often with grandparents. The biggest example of this is plain emotional blackmail. "If you want to see your grandchildren you must ..." It can be financial demands, babysitting or anything they want to force the grandparents to do.
When I see this type of emotional blackmail, I get furious. Children are not things to be used as a bargaining chip. Grandparents can be one of the best influences for children. They generally have more time and patience to give them, teaching them and nurturing them in love. I know that, personally, some of the best moments of my life were summers that I spent with my grandparents. I learned so much from them and I think they learned from me. I always knew I was loved even when I was away from them. This was during the time that the term "generation gap" came into play. There was no generation gap in my life. I actually won a competition with my response to the question "What do you think of the generation gap and how can it be fixed?" by explaining that with me as an example, there did not need to be a gap.
One person told me that their children would not allow the grandchildren see their grandparents because "Grandma is too sick for you to go there." Yes, FTD is a disease, but it is not the kind of sickness that was being suggested. I suspect that, in this case, the children had not bothered to learn anything about FTD and equate it with mental illness. I should explain that this grandmother is in earlier stages of FTD and the grandfather is also in the home in case any issues did arise.
Toxic people can also destroy relationships by controlling events. They can make plans with someone and then not show up no matter how much the other person was looking forward to the event. Another way is to have a gathering of family members or friends and not invite the one with FTD. Come on people, we always find out!
Within the last month, there were two weddings I was not invited to. One was a family member and one was a long-time friend. In this day of social media, it's pretty difficult to keep a wedding a secret. I kept waiting for an invitation to each of them, finally realizing it was not coming. The ironic part is that they were both out of town so that I would not have been able to attend anyway. I finally convinced myself to let it go and be happy that there were two wedding gifts I did not need to buy.
Many people with FTD have difficulty speaking. There are subgroups of FTD called PPA, Primary Progressive Aphasia. With this type, thinking of words, speaking words or coming up with the correct words can all become difficult or impossible. Too many people are just not comfortable when trying to communicate with anyone who does not speak well. Others assume that if you can't think of words or say them, that you must be stupid. This is ridiculous, rude and definitely toxic to those with PPA. How difficult is it to slow down, listen with patience and try to understand. You know I have to say it... "Those with FTD have dementia, they don't have stupid." That includes PPA.
You often hear the phrase "you learn who your friends are when...". Yep, you certainly do with FTD. Family members and people you thought were friends seem to disappear. I cannot figure it out. Are they afraid it is contagious? Are they afraid they won't know what to say" Are they afraid we will make demands of them? I doubt that I will ever figure it out. All most of us want is time with family and friends so that we can feel normal for just a little while.
Oh, and one other type of toxic people can be caregivers. Whether they expect too much of us, don't allow us to do things we are capable of doing, try to force us to do things we are not capable of, try to control every second of our day or talk down to us as though we are children, it hurts. The worst thing, in my opinion, that toxic caregivers can do is to talk about us negatively or complain about how difficult their task is when we are right there hearing what is being said. We need to be encouraged, not complained about. Care giving is a tough job, but so is having FTD.
Can those of us with FTD be toxic to others? Probably since we are not that different from everyone else. If we are, it should be remembered that we more than likely can not help being the way we are. We are still fighting the lack of impulse control, empathy and all the other dreadful symptoms of FTD. Most often, we truly cannot control what we are doing. Please treat us with kindness and understanding... Please!!!
Sunday, August 26, 2018
A Personal Tale of Patient vs. Caregiver
For the last few weeks, I have been forced to wear my caregiver hat even more than normal. I wish this hat fit me better. Believe me, having FTD and caring for someone else with dementia is extremely difficult.
During the past couple weeks, I have had to make a couple very difficult financial decisions. This sort of thing is something my husband and I would discuss and come to a mutual decision. Now, I need to make these decisions alone and it frightens me. I often made bad financial decisions, even before FTD, often deferring to my husband's suggestions. Now, here I am, needing to do it alone and it confuses me and leaves me worn out. I had already taken over our day to day financial issues when I realized bills were not being paid. I must say I was lucky and he did not protest at all. In fact, he was very relieved when I offered to do it and admitted that he had been struggling. That was one time that my care giving knowledge did kick in. I offered to do it. I did not say that he could not do it anymore. The sad part is that seven years ago, I had turned this responsibility over to him because it confused me so much.
The more major financial decisions are very difficult, partly because I understand the limitations that FTD causes for me. Fortunately, I took my own advice. I am constantly suggesting to those with FTD and care partners to consult with an elder care attorney. I took my own advice. He is redoing all my official documents: will, living will, financial power of attorney and healthcare power of attorney. We had already, a few years ago, met with this same attorney and he prepared all the same documents for us. The problem is that we both made each other responsible for everything, healthcare decisions, financial decisions and even funeral instructions. It is so important for the care partner to keep up with these type of things.
I mentioned that I was not always the best with financial decisions and have made some very bad ones. Because of that, I have decided that I am going to allow the elder care attorney to control most of our savings. Wow! That's a lot of trust to give someone. I know I cannot trust myself to make good financial decisions and do not want to put that burden on a family member so this was my choice.
Of course, financial decisions are not the only thing that prevents me from being the caregiver I would like to be. I do remember a lot of things from when I was the caregiver for previous family members and I try to use things that worked with them. I do a lot of taking deep breaths before I react and do a lot of retreating into my quiet room to calm myself down for a few minutes. I also, though, sometimes do it right.
My husband, like many people with dementia, no longer wants to shower. This is a man who never skipped a day of taking a lengthy shower. I remind myself that this is okay and not smelling so fresh is not going to kill him... or me. The day before I intend to get him into the shower, in the afternoon when he is most cognizant, I tell him that the next day he needs to shower. The actual shower day, again in the afternoon when he is most aware, I tell him it is time to shower. He still complains, but he does it without resisting. That is at least one thing I get right.
To avoid taking my husband to the grocery store, my sister takes me most Mondays. I never go without a list and it takes me several hours to put it together. All week, I do jot down items as we run out. But on Sundays or Monday mornings, I spend at least two hours putting the list together. Then, in order to keep the shopping trip as short as possible, I rewrite the list in the order of the store. This has really been working well for us and has been making the shopping trips somewhat less stressful.
Unfortunately, the store doesn't keep my FTD difficulties in mind. They are constantly moving things around, but it's been a couple years since they did a major reorganization. When we went to the store last week, I found a disorganized mess. I could have stopped, checked out and gone to a different store but that would not have worked either since being in an unfamiliar store is just as likely to break me. We stuck it out but half-way through the store, I yelled out "Why do they have to move things? I cannot handle moving things!" I did get a lot of stares, but my sister just took it in stride. Grocery shopping is another one of the chores my husband has taken over after my diagnosis that I had to once again start doing it myself.
I also still prepare all our dinners. Fortunately, my husband prefers to graze all day rather than have a true breakfast or lunch, so it is just dinner that I need to prepare. When I cook, I try to make things that we can have for at least two days to cut down on the need to cook every day. Cooking is difficult for me on some days. After I was diagnosed with FTD, he would notice when I was stressed and would often offer to go pick up dinner or he would help me cook something easy. Not only can he no longer drive out to get something, he no longer notices when I am stressed or worn out. If he does notice, he asks me why I get that way.
Again, these are the things I do that are on the positive side as a caregiver. Unfortunately, the anger and frustration of FTD affect me, even in my caregiver role. I lose patience more often than I would like to admit. As always, if I think it, I am most likely to speak it. Yes, I yell even though I know it will do nothing but make situation worse, but it is not something I can always control. The problem is, these are the first things that FTD caused me to do long before he developed dementia. If I couldn't control it before all the added stress of being a caregiver, I sure cannot control it now.
I must add that I do get angry and frustrated that he has a 24/7 caregiver in me and I don't have anyone. I know I can call my sister for most anything, any time, but I try to limit how often I call on her. I do call her when I feel I am at my wit's end. My daughter also calls me every evening to check in on what is going on. She can always get me to laugh about it which helps enormously. I went from having a husband who was always trying to do everything for me, to his not being able to do anything.
I often end up totally and completely exhausted with no desire to do anything. I was that way when I only had my own FTD to deal with. Now, it is multiplied several times over. I will bet that you can tell that today is one of those days. When you combine the days that FTD leaves me without energy to do anything with a day of needing to do everything, it ends up not looking pretty.
This has ended up being more of a look into our personal lives than I had originally intended. I hope I achieved my goal of showing that both sides of the FTD picture can be terrifyingly difficult to handle. This is what I tried to do in last week's blog as well, though some caregivers did not see what I was trying to say.
Even from the beginning of my adventure with FTD, I often said that I could not begin to decide which was worse... being the one with the disease or being the one caring for that person. I knew this going into my FTD challenge from being the caregiver to my grandmother, later my mom and then my aunt before being diagnosed myself. One bit of irony is that I was finally given the diagnosis of FTD right around the time my aunt died. It seems my family just cannot get away from this disease.
Sunday, August 19, 2018
We Are Not So Different After All
Some days there is just no coming up with a subject to blog about. This usually happens after several days of being frustrated with the limitations FTD brings into my life.
One frustration that comes up repeatedly is a vast difference between the caregiver view of FTD and the view of the actual person who has FTD. These two viewpoints are not always vastly different but other times it can be a huge chasm.
Part of the problem lies in limited places that someone with FTD can express their opinion or explain what is happening in their lives. It would be wonderful if there was an open forum where both sides could express their viewpoint on the same subjects. Don't get me wrong, there are support sites that are open to both caregivers and those with the disease. Unfortunately, in my experience, these sites are slanted in favor of the caregiver. It saddens me to say that. In an ideal world, the view of both sides should be the same.
During this past week, I noticed a post on two of the support groups open to both. It was titled "8 Warning Signs That You Are Emotionally and Mentally Exhausted." (The link to the entire article is http://runwonder.com/relationships/8-warning-signs-that-you-are-emotionally-and-mentally-exhausted.html if you want to read the entire length.
The 8 items were: you are easily irritated; your motivation levels are dropping; you are experiencing anxiety attacks more than usual; you have trouble sleeping; meaningless things upset you; you feel dizzy and nauseous; you feel like crying for no reason; and, you start to feel detached.
I found this information to be quite interesting because, even though it was posted and commented on by caregivers, I realized that it pertained to all of us... those of us with FTD as well as the caregivers. We are really not all that different. We are all extremely frustrated by this disease.Those of us with the disease are frustrated by not being able to comprehend or do the things we used to do almost without thinking, things that just came naturally.
The first thing that came into my mind was the television remote control. I sit and stare at that dreaded device for several minutes before I can figure out how to tell it to do what I need it to. I often end up throwing it down or even across the room. When I do something like that, my husband gets angry and frustrated because he sees it as me acting in anger. He has not seen me struggling with the remote, all he knows is that I threw a fit and threw something which frustrates him to no end. This is only one small example as our days are filled with them.
Those of us with FTD are faced with difficult decisions that were not even conscious decisions prior to our disease. What to wear, when to brush our teeth, what to eat are just a tiny few. Everything we do throughout the day needs to be a conscious thought and can turn into total frustration. What do we do then? Usually, lash out in anger just as I do with the remote. Some days, it does not take long at all for us to give up on trying to do things. The other reaction is to panic because I cannot get something accomplished. Panic can lead to more anger and frustration and these just feed on themselves.
I really can only speak for myself, but I run away from the problem. Fortunately, most often I can now recognize when I am getting out of control. My world starts spinning, my mind cannot stop and, lately, my entire world goes black. I am so stressed that I cannot focus enough to see or hear anything around me. This is when I know to retreat to a quiet and dark place. If I don't have this kind of place to go to, I am liable to scream at people or just wrap my arms around myself and retreat from the world and everyone around me.
At home, my quiet space is what used to be just my bedroom. I have converted it into an all purpose room of sorts. One corner is my office and one corner is my comfort spot and the rest is bedroom. If I am fortunate enough to be near my room when frustrations get out of control like this, that is where I go. If I am lucky, I can fall asleep, but most times I am so wound up that I will just curl up into a fetal position and rock myself and sleep is impossible. If someone attempts to come in and try to calm me, it makes everything worse. I don't want anything to do with anyone or anything.
My daughter and my sister know how to deal with me when I reach that point and just leave me alone long enough to calm down. My husband? Not so much. I cannot fault him for that because his Alzheimer's Disease makes it very difficult for him to understand. It is not unusual for him to keep trying to come into my room to "talk about" it. That is the opposite of what I need.
So, if you follow along with this tale of struggling with the remote control, you just might see why I insist that the list of eight things can totally apply to someone with FTD. Now, look at the list again and compare those warning signs to how a caregiver might react to the same situation. Those warning signs are spot on once again. So, how different are we anyway?
This situation really did happen in my house just last week. I was actually lucky. If we had been out somewhere, at the store, at someone else's home or anywhere but home, it could have been a huge event. There would have been even more anger, frustration and stress on both sides.
This is why I say that we have more in common than either side of the equation realizes. We need more conversation and understanding. In the support groups that have both sides represented, it is possible that a different person with FTD could explain to the caregiver what probably happened. It could work the other way as well, another caregiver could explain to someone with FTD why our caregiver reacted the way they did.
What it comes down to is that we are ALL in this together. In my opinion at least, we need more open communication between the two sides. I cannot tell you how many people with FTD have told me that they don't visit these joint support group sites anymore because it is just too painful to read what caregivers think of their "loved" one for whom they are caring.
There are conferences that are just for caregivers. I don't know of any that are just for those of us with FTD. That, of course, would be problematic since we often need a caregiver with us but the principal is the same. There are respite programs for the caregivers. Those with FTD get no respite from the disease.
Please understand that I do understand what the caregiver deals with. I have explained numerous times that I was a caregiver for my grandmother, mother and aunt before I showed my own signs of the disease. I am also the caregiver for my husband. Yes, it is difficult when we are both each other's caregiver, but we have been managing so far, with a lot of help from my family. So while I do not know the difficulties in every case of FTD, since no two are the same, I have a pretty darned good idea.
My point here is that I am not trying to pick on or criticize the caregivers. My intent with this blog is to point out that both sides are dealing with the same issues. One side is not any easier than the other.
As I said, we are all in this together. We need to be more understanding of each other. We need to communicate more openly with each other and recognize that neither one of us has an easy row to hoe. There are many weeds everywhere, throwing up obstacles all over the place, all the time. We just need to make sure one side doesn't destroy the other.
One frustration that comes up repeatedly is a vast difference between the caregiver view of FTD and the view of the actual person who has FTD. These two viewpoints are not always vastly different but other times it can be a huge chasm.
Part of the problem lies in limited places that someone with FTD can express their opinion or explain what is happening in their lives. It would be wonderful if there was an open forum where both sides could express their viewpoint on the same subjects. Don't get me wrong, there are support sites that are open to both caregivers and those with the disease. Unfortunately, in my experience, these sites are slanted in favor of the caregiver. It saddens me to say that. In an ideal world, the view of both sides should be the same.
During this past week, I noticed a post on two of the support groups open to both. It was titled "8 Warning Signs That You Are Emotionally and Mentally Exhausted." (The link to the entire article is http://runwonder.com/relationships/8-warning-signs-that-you-are-emotionally-and-mentally-exhausted.html if you want to read the entire length.
The 8 items were: you are easily irritated; your motivation levels are dropping; you are experiencing anxiety attacks more than usual; you have trouble sleeping; meaningless things upset you; you feel dizzy and nauseous; you feel like crying for no reason; and, you start to feel detached.
I found this information to be quite interesting because, even though it was posted and commented on by caregivers, I realized that it pertained to all of us... those of us with FTD as well as the caregivers. We are really not all that different. We are all extremely frustrated by this disease.Those of us with the disease are frustrated by not being able to comprehend or do the things we used to do almost without thinking, things that just came naturally.
The first thing that came into my mind was the television remote control. I sit and stare at that dreaded device for several minutes before I can figure out how to tell it to do what I need it to. I often end up throwing it down or even across the room. When I do something like that, my husband gets angry and frustrated because he sees it as me acting in anger. He has not seen me struggling with the remote, all he knows is that I threw a fit and threw something which frustrates him to no end. This is only one small example as our days are filled with them.
Those of us with FTD are faced with difficult decisions that were not even conscious decisions prior to our disease. What to wear, when to brush our teeth, what to eat are just a tiny few. Everything we do throughout the day needs to be a conscious thought and can turn into total frustration. What do we do then? Usually, lash out in anger just as I do with the remote. Some days, it does not take long at all for us to give up on trying to do things. The other reaction is to panic because I cannot get something accomplished. Panic can lead to more anger and frustration and these just feed on themselves.
I really can only speak for myself, but I run away from the problem. Fortunately, most often I can now recognize when I am getting out of control. My world starts spinning, my mind cannot stop and, lately, my entire world goes black. I am so stressed that I cannot focus enough to see or hear anything around me. This is when I know to retreat to a quiet and dark place. If I don't have this kind of place to go to, I am liable to scream at people or just wrap my arms around myself and retreat from the world and everyone around me.
At home, my quiet space is what used to be just my bedroom. I have converted it into an all purpose room of sorts. One corner is my office and one corner is my comfort spot and the rest is bedroom. If I am fortunate enough to be near my room when frustrations get out of control like this, that is where I go. If I am lucky, I can fall asleep, but most times I am so wound up that I will just curl up into a fetal position and rock myself and sleep is impossible. If someone attempts to come in and try to calm me, it makes everything worse. I don't want anything to do with anyone or anything.
My daughter and my sister know how to deal with me when I reach that point and just leave me alone long enough to calm down. My husband? Not so much. I cannot fault him for that because his Alzheimer's Disease makes it very difficult for him to understand. It is not unusual for him to keep trying to come into my room to "talk about" it. That is the opposite of what I need.
So, if you follow along with this tale of struggling with the remote control, you just might see why I insist that the list of eight things can totally apply to someone with FTD. Now, look at the list again and compare those warning signs to how a caregiver might react to the same situation. Those warning signs are spot on once again. So, how different are we anyway?
This situation really did happen in my house just last week. I was actually lucky. If we had been out somewhere, at the store, at someone else's home or anywhere but home, it could have been a huge event. There would have been even more anger, frustration and stress on both sides.
This is why I say that we have more in common than either side of the equation realizes. We need more conversation and understanding. In the support groups that have both sides represented, it is possible that a different person with FTD could explain to the caregiver what probably happened. It could work the other way as well, another caregiver could explain to someone with FTD why our caregiver reacted the way they did.
What it comes down to is that we are ALL in this together. In my opinion at least, we need more open communication between the two sides. I cannot tell you how many people with FTD have told me that they don't visit these joint support group sites anymore because it is just too painful to read what caregivers think of their "loved" one for whom they are caring.
There are conferences that are just for caregivers. I don't know of any that are just for those of us with FTD. That, of course, would be problematic since we often need a caregiver with us but the principal is the same. There are respite programs for the caregivers. Those with FTD get no respite from the disease.
Please understand that I do understand what the caregiver deals with. I have explained numerous times that I was a caregiver for my grandmother, mother and aunt before I showed my own signs of the disease. I am also the caregiver for my husband. Yes, it is difficult when we are both each other's caregiver, but we have been managing so far, with a lot of help from my family. So while I do not know the difficulties in every case of FTD, since no two are the same, I have a pretty darned good idea.
My point here is that I am not trying to pick on or criticize the caregivers. My intent with this blog is to point out that both sides are dealing with the same issues. One side is not any easier than the other.
As I said, we are all in this together. We need to be more understanding of each other. We need to communicate more openly with each other and recognize that neither one of us has an easy row to hoe. There are many weeds everywhere, throwing up obstacles all over the place, all the time. We just need to make sure one side doesn't destroy the other.
Sunday, August 12, 2018
The Elephant In the Room
I think it is past time for me to address the elephant in the room. This is one thing that most of us are reluctant to talk about normally and even more so when dementia is involved. This elephant is sex. If discussing sex issues offends you, please stop here.
We are all sexual beings and learn, even as small children, that boys and girls are different. This progresses eventually into interest in sex. As we mature, we learn how and when to channel the sexual drive. Society and its norms teach us what is appropriate and what is not, as well as when it is appropriate and not.
Surprisingly, I found that there are a lot of studies out there regarding sexuality and dementia. When you have FTD, social filters are absent or greatly diminished. Studies vary and I found sources suggesting that sexual issues develop for anywhere in 7% to 25% of diagnosed cases. I suspect it is higher than that because it is a subject that many are squeamish about discussing.
What is interesting is that sexual issues run the complete gambit. The person with FTD may want nothing to do with sex or go in the opposite direction of thinking about sex nearly all the time. It should be of no surprise that the difference may lie in which area of the brain is being affected.
Those who have little or absolutely no sexual desire may relate to testosterone levels. Sexual appetite is controlled by the amount of testosterone in both men and women. These levels tend to decrease as we age, In dementia they can be reduced even more as more and more brain cells are destroyed. the lower the testosterone levels may become. In addition, many of the prescription medications that are often prescribed to control symptoms of FTD can affect the libido in either direction. Some can raise the desire and others can eliminate it.
Most of those with hypersexuality tend to be those diagnosed with bvFTD. Researchers at the University of California in San Francisco (UCSF) conducted a study to determine if hypersexual behavior is related to other "reward seeking" behaviors. This would include overeating and the craving for sweets or alcohol. They found that in people with FTD, there is a loss of cells in the putamen and pallidum, which are areas of the brain located on the right side of the brain (temporal lobe). This area of the brain is known to be responsible for reward seeking behaviors and the link to it includes hypersexuality.
This leaves little doubt that hypersexuality is caused by FTD and an increased interest in sexual things can be as strong as our craving for sweets and is very difficult, if not impossible, to be controlled by the person with FTD. As much as I hate the expression, in hypersexuality as well as most FTD symptoms, it is the disease controlling it, not the person with the disease.
Again, I will lead with the easier subject to address. The lack of sexual interest in someone with FTD affects the loved one, who is most likely the caregiver, more than themselves. If sexual relations were a regular part of their life together, this can leave a huge void in their relationship. Without this loving connection, the caregiver can feel unloved and frustrated. The result may be the same for the person with FTD because they remember what their sexual interest was prior to FTD. They may miss that assurance of love and comfort.
Hypersexuality is more complex. It can manifest in many different behaviors. Some have what are considered normal interests in sex but they fail to recognize when talking about it or acting on it are appropriate. Others develop obsessive desires and the thoughts of sex are nearly constant. One long-time advocate for FTD summed it up by saying "I now have the libido of a sixteen year old and the mouth of a drunken sailor."
One of the issues that arises from hypersexuality is that at the same time that the one with FTD has this intense craving for all things sexual, they have also become undesirable to their loved one/caregiver. This does not mean that their love is no longer there but the desire for intimacy is gone. In some cases, unfortunately, it does mean that the caregiver does not have a romantic love of the one with FTD, not to say they don't still love them, it is just in more of a companionship way. I have witnessed this in many cases and it makes me feel extremely sad. Just when the person with FTD needs intimacy, it is denied and becomes just one more frustration of dealing with the disease. Everyone needs to feel loved.
Pornography viewing often becomes an issue. It can become compulsive for someone with bvFTD. In some cases, that will be the only way their hypersexuality manifests itself. In that case, denying access to the internet, etc. may be self-defeating. If their compulsion is being controlled by this and not causing other issues, it might be best to let it continue even if you find it morally offensive.
Another issue is often making inappropriate sexual comments at inappropriate times. Trying to distract them may not be successful and may cause even more embarrassment. This is a good time to use the Awareness Cards that are available the AFTD. These can be printed from their website (www.theaftd.org). Then, try to steer them away from the situation.
Yet another problem with hypersexuality can be compulsive masturbation. One of the best ways to handle this is to remind them that this is something that is done in privacy and steer them to their own bedroom. While it may involve the "ewwww" factor, if it is controlled to stay in privacy, it can be a safe outlet for their sexual desires. Again, if it is done in an inappropriate place, try handing an Awareness Card to those witnessing the event and redirect the FTDer away, reminding that it is done in privacy and in their own room.
When it becomes an extreme problem, many dress their loved one in jumpsuits. There are even ones that are not open in the front. These can also help prevent disrobing, often another consequence of FTD. One problem with the jumpsuits is that it can make toileting a difficult process.
Above all, to the caregivers, I beg you to not take these issues personally (yes, I know it is difficult) and do not belittle, humiliate or criticize the one with FTD. These are not behaviors that they can consciously control.
Most people tend to think of hypersexual activities as problems for men only. This is not even close to the truth. The issues affect both sexes. They may manifest themselves in somewhat different ways. I believe that the issues, when in a woman, are not discussed as openly as they are when it is about a man.
One caution I must include about masturbation. It can also be a sign of vaginal and/or urinary tract infections. It is best to rule out these possibilities.
As always, sexuality issues should be discussed with the doctor no matter how awkward. It needs to be determined if it is actually a side effect of a medication or infection. Once those are ruled out and if redirection and distraction is not the solution, there are medication that can control the hypersexuality.
We are all sexual beings and learn, even as small children, that boys and girls are different. This progresses eventually into interest in sex. As we mature, we learn how and when to channel the sexual drive. Society and its norms teach us what is appropriate and what is not, as well as when it is appropriate and not.
Surprisingly, I found that there are a lot of studies out there regarding sexuality and dementia. When you have FTD, social filters are absent or greatly diminished. Studies vary and I found sources suggesting that sexual issues develop for anywhere in 7% to 25% of diagnosed cases. I suspect it is higher than that because it is a subject that many are squeamish about discussing.
What is interesting is that sexual issues run the complete gambit. The person with FTD may want nothing to do with sex or go in the opposite direction of thinking about sex nearly all the time. It should be of no surprise that the difference may lie in which area of the brain is being affected.
Those who have little or absolutely no sexual desire may relate to testosterone levels. Sexual appetite is controlled by the amount of testosterone in both men and women. These levels tend to decrease as we age, In dementia they can be reduced even more as more and more brain cells are destroyed. the lower the testosterone levels may become. In addition, many of the prescription medications that are often prescribed to control symptoms of FTD can affect the libido in either direction. Some can raise the desire and others can eliminate it.
Most of those with hypersexuality tend to be those diagnosed with bvFTD. Researchers at the University of California in San Francisco (UCSF) conducted a study to determine if hypersexual behavior is related to other "reward seeking" behaviors. This would include overeating and the craving for sweets or alcohol. They found that in people with FTD, there is a loss of cells in the putamen and pallidum, which are areas of the brain located on the right side of the brain (temporal lobe). This area of the brain is known to be responsible for reward seeking behaviors and the link to it includes hypersexuality.
This leaves little doubt that hypersexuality is caused by FTD and an increased interest in sexual things can be as strong as our craving for sweets and is very difficult, if not impossible, to be controlled by the person with FTD. As much as I hate the expression, in hypersexuality as well as most FTD symptoms, it is the disease controlling it, not the person with the disease.
Again, I will lead with the easier subject to address. The lack of sexual interest in someone with FTD affects the loved one, who is most likely the caregiver, more than themselves. If sexual relations were a regular part of their life together, this can leave a huge void in their relationship. Without this loving connection, the caregiver can feel unloved and frustrated. The result may be the same for the person with FTD because they remember what their sexual interest was prior to FTD. They may miss that assurance of love and comfort.
Hypersexuality is more complex. It can manifest in many different behaviors. Some have what are considered normal interests in sex but they fail to recognize when talking about it or acting on it are appropriate. Others develop obsessive desires and the thoughts of sex are nearly constant. One long-time advocate for FTD summed it up by saying "I now have the libido of a sixteen year old and the mouth of a drunken sailor."
One of the issues that arises from hypersexuality is that at the same time that the one with FTD has this intense craving for all things sexual, they have also become undesirable to their loved one/caregiver. This does not mean that their love is no longer there but the desire for intimacy is gone. In some cases, unfortunately, it does mean that the caregiver does not have a romantic love of the one with FTD, not to say they don't still love them, it is just in more of a companionship way. I have witnessed this in many cases and it makes me feel extremely sad. Just when the person with FTD needs intimacy, it is denied and becomes just one more frustration of dealing with the disease. Everyone needs to feel loved.
Pornography viewing often becomes an issue. It can become compulsive for someone with bvFTD. In some cases, that will be the only way their hypersexuality manifests itself. In that case, denying access to the internet, etc. may be self-defeating. If their compulsion is being controlled by this and not causing other issues, it might be best to let it continue even if you find it morally offensive.
Another issue is often making inappropriate sexual comments at inappropriate times. Trying to distract them may not be successful and may cause even more embarrassment. This is a good time to use the Awareness Cards that are available the AFTD. These can be printed from their website (www.theaftd.org). Then, try to steer them away from the situation.
Yet another problem with hypersexuality can be compulsive masturbation. One of the best ways to handle this is to remind them that this is something that is done in privacy and steer them to their own bedroom. While it may involve the "ewwww" factor, if it is controlled to stay in privacy, it can be a safe outlet for their sexual desires. Again, if it is done in an inappropriate place, try handing an Awareness Card to those witnessing the event and redirect the FTDer away, reminding that it is done in privacy and in their own room.
When it becomes an extreme problem, many dress their loved one in jumpsuits. There are even ones that are not open in the front. These can also help prevent disrobing, often another consequence of FTD. One problem with the jumpsuits is that it can make toileting a difficult process.
Above all, to the caregivers, I beg you to not take these issues personally (yes, I know it is difficult) and do not belittle, humiliate or criticize the one with FTD. These are not behaviors that they can consciously control.
Most people tend to think of hypersexual activities as problems for men only. This is not even close to the truth. The issues affect both sexes. They may manifest themselves in somewhat different ways. I believe that the issues, when in a woman, are not discussed as openly as they are when it is about a man.
One caution I must include about masturbation. It can also be a sign of vaginal and/or urinary tract infections. It is best to rule out these possibilities.
As always, sexuality issues should be discussed with the doctor no matter how awkward. It needs to be determined if it is actually a side effect of a medication or infection. Once those are ruled out and if redirection and distraction is not the solution, there are medication that can control the hypersexuality.
Sunday, August 5, 2018
Answering Questions Again
Today, I want to try to answer two questions I hear frequently. These are not new questions and are ones I have tried before to get the answers out there, but I still keep getting asked. So bear with me while I try again.
The first is one that my sister and brother-in-law are always asking, "Why didn't you call us, we would have done that for you?" In a different form, caregivers ask, "Why do they insist on doing themselves and then just make a mess of it?" A perfect example of this presented itself to me a few days ago.
After getting out of bed one rainy day, I popped a coffee pod in the Keurig to enjoy a hot cup when I got back from getting the newspaper and mail. It didn't work that way. When I stepped into the laundry room, I was met with a nearly audible "Squissshhh." We had flash floods overnight, again. Our trusty sump pump tried, but could not keep up with the water trying to invade the house, causing it to come up from the floor drains there, as well as in the garage.
It quickly became overwhelming, but I kept saying to myself, "One thing at a time!" It wasn't time to panic. The water was only out of the drains by about three feet. That's in radius, not depth! I started lifting things off the floor. I started with cardboard boxes and anything sitting in water, then continued on to everything else. That was good, logical thinking for someone with FTD, I must say. I then started mopping up. It was only about three hours of work, leaving me tired but pretty darned good about myself that I did it.
The exhaustion did not come from the physical exertion, it was more the strain on the brain. So, why did I do it all myself? I could have awakened my husband to help or called my sister, but I believe that would have made it worse. My brain was already strained from trying to attack the problem in a logical manner: get things to safety, find the mop, bucket, towels, rags and anything else that could sop up the water. I turned the dehumidifier on to Turbo mode, set up a couple fans. I then attacked getting the water out. I did it and was feeling pretty good that I had done it.
I could have called my sister and had them come over with his wet vac and to help move things. I knew they wouldn't mind being drug out of bed and driving here. The problem with that is that I would have to coordinate things. I would need to think of what I should do, what everyone else could do. My brain would not have been able to do that. Also, the laundry room is not a large space, maybe 12x20 feet. Adding that many people into the room would have me feeling trapped.
That is why I had to do it myself. Did I do it exactly right? Probably not. Throwing everything made out of fabric that I could put my hands on in to soak up the water and then dragging them outside to dry out was not the best decision. Perhaps someone else might have thought to put them in the washing machine that was sitting right there and put them through the spin cycle. Perhaps using a wet vac would have been more efficient. Yes, but! I would have been a basket case that would have caused a set back for at least a couple days.
By doing it myself, I avoided a breakdown and ended up feeling pretty darned proud of myself for getting it done. This is an extreme example, but the premise is the same for anything. Some times, allowing the person with FTD to do something themselves might cause additional work for the caregiver, but is much preferable over an argument about it, one that could get nasty and lead to hurt feelings on both sides.
I am not saying to let someone with FTD do everything themselves, but when it appears to be possible for them to do it, why not let them. When a caregiver, family member or friend says "I could have helped you, you should have called," let it go at that. Don't keep repeating it or arguing that they should have called or asked you to do it. When someone does that to me, what I hear is "You are not capable of doing it yourself." Don't you think it would be better to say something like "You could have called me for help, but it sure looks like you got it done."
In other situations, if you realize that the FTD'er wants to do something on their own, as long as it doesn't present a serious danger, why not let them try? "Okay, go ahead but if you run into trouble, I'm right here to help." sounds much better than "No, you can't do that, you will make a mess of it." One hint, though. Don't let someone like me use the superglue. I spilled some on the counter and thought I could wipe it up with my hand. Enough said about that!
I give my sister and brother-in-law credit. They stayed away the day of the flood, but the next day, "impulsively" stopped by to bring me some tomatoes and peaches. They never added "and to check on things."
On to the second question. "Why do you let him/her just sit there with the tv on, not doing anything?" Another one is, "Why do you let her/him sit there and take naps all day." There are a lot of ways of asking a similar version of the same thing, as you can imagine.
If you will allow me to wear my caregiver hat for a while, I will try to explain it. My husband, who has Alzheimer's, always loved sports. I used to say he would watch turtle races if they were on tv. I actually saw him watching lawnmower racing once. He still insists he loves sports and is quite happy if I let him sit in his recliner watching them. He doesn't always understand what is going on and gets confused, but he seems to still enjoy watching. Yes, he nods off quite often, but he needs the rest. He still sleeps at night. He is not interested in anything else, but, to me, so what? To me, it is all about quality of life. He is happy, that's my biggest goal, to keep him that way.
Now, back to wearing the hat of someone with FTD. We need a lot of sleep. As I often mention, our brains seem to need more sleep than our bodies do, and our bodies need a lot! We also tend to know what we can do on any particular day. I can get out of bed in the morning and tell you if I can do things that day or if I just need to sit around doing nothing. Days when I feel like I can't do anything are usually days following a day when I did too much. Too much can be going out shopping, entertaining visitors, anything that requires my brain to do a lot of work. We have to learn to listen to our bodies and brains so that we can learn when to stop and do nothing. Pushing ourselves too far can cause a worsening of symptoms. Fortunately, most times we bounce back after a couple restful days.
It really helps if caregivers understand this so that they can schedule a day or two of downtime following a day of doing more than usual. If that isn't possible, it helps if they at least understand that the next day will likely bring out the cranky, grumpy and disagreeable FTD'er. Yes, I do realize how difficult this can be in real life. I can't tell you how many days of trying to make it through a day with FTD after being exhausted taking care of my husband.
One of the best parts of my day is in the morning, taking an hour for myself before my husband gets out of bed. I drink a hot cup of coffee, read the newspaper and enjoy the peace and quiet that someone with FTD needs. As long as I don't find water in the basement along the way.,,
The first is one that my sister and brother-in-law are always asking, "Why didn't you call us, we would have done that for you?" In a different form, caregivers ask, "Why do they insist on doing themselves and then just make a mess of it?" A perfect example of this presented itself to me a few days ago.
After getting out of bed one rainy day, I popped a coffee pod in the Keurig to enjoy a hot cup when I got back from getting the newspaper and mail. It didn't work that way. When I stepped into the laundry room, I was met with a nearly audible "Squissshhh." We had flash floods overnight, again. Our trusty sump pump tried, but could not keep up with the water trying to invade the house, causing it to come up from the floor drains there, as well as in the garage.
It quickly became overwhelming, but I kept saying to myself, "One thing at a time!" It wasn't time to panic. The water was only out of the drains by about three feet. That's in radius, not depth! I started lifting things off the floor. I started with cardboard boxes and anything sitting in water, then continued on to everything else. That was good, logical thinking for someone with FTD, I must say. I then started mopping up. It was only about three hours of work, leaving me tired but pretty darned good about myself that I did it.
The exhaustion did not come from the physical exertion, it was more the strain on the brain. So, why did I do it all myself? I could have awakened my husband to help or called my sister, but I believe that would have made it worse. My brain was already strained from trying to attack the problem in a logical manner: get things to safety, find the mop, bucket, towels, rags and anything else that could sop up the water. I turned the dehumidifier on to Turbo mode, set up a couple fans. I then attacked getting the water out. I did it and was feeling pretty good that I had done it.
I could have called my sister and had them come over with his wet vac and to help move things. I knew they wouldn't mind being drug out of bed and driving here. The problem with that is that I would have to coordinate things. I would need to think of what I should do, what everyone else could do. My brain would not have been able to do that. Also, the laundry room is not a large space, maybe 12x20 feet. Adding that many people into the room would have me feeling trapped.
That is why I had to do it myself. Did I do it exactly right? Probably not. Throwing everything made out of fabric that I could put my hands on in to soak up the water and then dragging them outside to dry out was not the best decision. Perhaps someone else might have thought to put them in the washing machine that was sitting right there and put them through the spin cycle. Perhaps using a wet vac would have been more efficient. Yes, but! I would have been a basket case that would have caused a set back for at least a couple days.
By doing it myself, I avoided a breakdown and ended up feeling pretty darned proud of myself for getting it done. This is an extreme example, but the premise is the same for anything. Some times, allowing the person with FTD to do something themselves might cause additional work for the caregiver, but is much preferable over an argument about it, one that could get nasty and lead to hurt feelings on both sides.
I am not saying to let someone with FTD do everything themselves, but when it appears to be possible for them to do it, why not let them. When a caregiver, family member or friend says "I could have helped you, you should have called," let it go at that. Don't keep repeating it or arguing that they should have called or asked you to do it. When someone does that to me, what I hear is "You are not capable of doing it yourself." Don't you think it would be better to say something like "You could have called me for help, but it sure looks like you got it done."
In other situations, if you realize that the FTD'er wants to do something on their own, as long as it doesn't present a serious danger, why not let them try? "Okay, go ahead but if you run into trouble, I'm right here to help." sounds much better than "No, you can't do that, you will make a mess of it." One hint, though. Don't let someone like me use the superglue. I spilled some on the counter and thought I could wipe it up with my hand. Enough said about that!
I give my sister and brother-in-law credit. They stayed away the day of the flood, but the next day, "impulsively" stopped by to bring me some tomatoes and peaches. They never added "and to check on things."
On to the second question. "Why do you let him/her just sit there with the tv on, not doing anything?" Another one is, "Why do you let her/him sit there and take naps all day." There are a lot of ways of asking a similar version of the same thing, as you can imagine.
If you will allow me to wear my caregiver hat for a while, I will try to explain it. My husband, who has Alzheimer's, always loved sports. I used to say he would watch turtle races if they were on tv. I actually saw him watching lawnmower racing once. He still insists he loves sports and is quite happy if I let him sit in his recliner watching them. He doesn't always understand what is going on and gets confused, but he seems to still enjoy watching. Yes, he nods off quite often, but he needs the rest. He still sleeps at night. He is not interested in anything else, but, to me, so what? To me, it is all about quality of life. He is happy, that's my biggest goal, to keep him that way.
Now, back to wearing the hat of someone with FTD. We need a lot of sleep. As I often mention, our brains seem to need more sleep than our bodies do, and our bodies need a lot! We also tend to know what we can do on any particular day. I can get out of bed in the morning and tell you if I can do things that day or if I just need to sit around doing nothing. Days when I feel like I can't do anything are usually days following a day when I did too much. Too much can be going out shopping, entertaining visitors, anything that requires my brain to do a lot of work. We have to learn to listen to our bodies and brains so that we can learn when to stop and do nothing. Pushing ourselves too far can cause a worsening of symptoms. Fortunately, most times we bounce back after a couple restful days.
It really helps if caregivers understand this so that they can schedule a day or two of downtime following a day of doing more than usual. If that isn't possible, it helps if they at least understand that the next day will likely bring out the cranky, grumpy and disagreeable FTD'er. Yes, I do realize how difficult this can be in real life. I can't tell you how many days of trying to make it through a day with FTD after being exhausted taking care of my husband.
One of the best parts of my day is in the morning, taking an hour for myself before my husband gets out of bed. I drink a hot cup of coffee, read the newspaper and enjoy the peace and quiet that someone with FTD needs. As long as I don't find water in the basement along the way.,,
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