Warning, this blog is going to degenerate into a rant immediately!
I wish all my "friends" and loving "family" members could see me today, better yet, jump into my brain and realize how it feels to have FTD. I may as well include caregivers in there too. It truly is impossible for anyone who does not have FTD to realize just how much and how devastatingly this disease affects those of us with it. I know many try and actually think they do, but you can't, just as no one can fully understand the strain of being a caregiver. I have been both. I would voluntarily be a caregiver again. I would never volunteer to have this disease again, even if there was a way to go back and not have FTD.
I feel like I am falling apart. My daughter and I are still living in her one-bedroom apartment and will be for another two months. She is also working from home most days and of course, thank you FTD, I forget to be quiet and not interrupt her with questions about what she is doing. No impulse control here.
I feel like the world is falling apart around me. All the hatred being spewed. I do not remember any election becoming as full of hatred as this one has. I can't help but look back at the first presidential election I can remember... Kennedy vs Nixon. Now there was a hullabaloo about the horror of possibly electing a Catholic, but that was even handled with complete decorum compared to this one. The taunts I remember are "Nixon, Nixon, he's my man. Kennedy belongs in a garbage can." I heard it just as frequently the other way around. As I aged, I still knew of politicians reaching across the aisle to work for the common good. That is a far as I dare delve into politics. I only raise the dangerous subject to explain how all the dissension affects me and piles on the stress to my FTD burden.
I mention it partly to explain how, this week, when I went to get my new driver's license and was given the opportunity to register to vote in my new state. I was terrified when it was time to declare my political party. As it was, I whispered it to the agent so no one would overhear me. To me, it is pathetic that I had to feel that way. It actually helped when she laughed at me.
I have just one family member living near me (excepting my daughter and sister) who has stood by me through my battle with FTD. She would pick up on when I was feeling down and she would come by the house to help or just visit with her fiance's child who, by the way, looked adorable in his face mask! Yes, it was technically a violation of the stay at home orders, but it was a medical emergency in my mind. Now that I am several states away, she is going through an extremely difficult time and I am not there to stand by her side. So now we add self-imposed guilt into my frame of mind.
Yes, I try to provide support via phone and social media, but it isn't the same. To top it off, she is 3+ months pregnant and a high risk for carrying to term. Thinking about it, it is probably better that I am not there because I would probably be arrested for attacking the other family members who are unreasonably causing the hardships on someone they should be loving and caring for, especially right now.
With all this that I am stressing over, whether justified or not, trying to make choices for the new house we are having built is way too overwhelming. My daughter has her ideas of what colors to paint and I have mine. She has her ideas of what furniture to use and where to put it. It would be ideal to buy new things for a new house, but with more than two households full of everything, it just does not make sense. I don't even want to think about trying to decide how to arrange furniture and such. Already, during a walk through of the house, the project manager mentioned an open area and I said "Oh, good, a place to put pretties." My daughter scoffed and said "Not your pretties!"
I did have a break through today while trying to agree on wall colors. Nine years after being diagnosed with FTD, I discovered it IS possible to cry. It is also possible to curl up into a fetal position while you do, but FTD has never prevented me from doing that. I finally came to the conclusion that my daughter must allow me to select the colors for the rooms in my part of the house and I will allow her to choose the ones for her rooms. The common rooms will be a warm shade of neutral, a vanilla choice really, as that is the name of the paint. That's as close as I can get to being humorous today and that is only pathetically humorous.
I also must add that I am greatly worried about an FTD friend who is worsening rapidly. It is probably more frustrating for me when I am worried about any of my FTD friends than when I am worried for myself. For myself, I seem to be able to go along with "It is what it is" mentality, but not so when it comes to others.
It doesn't help that I just came off a multi-day FTD headache either. At least today I can actually exist without drugs. Oh, and while trying to work through the headache, I burned myself, as I tend to do. forgetting things are hot. Things like that, things that FTD'ers do nearly constantly, make me angry at myself and angry at the world.
So, why did I wrote this blog entry knowing that it was going to be a rant against everyone and everything? The answer is simple. This is a look into the mind of someone with FTD... constant frustration, much anger, much hopelessness, some paranoia and pain gets thrown in as well. To top it off, I couldn't remember how to go back and correct my typos and ended up deleting entire paragraphs that I had to try to remember so I could rewrite them.
Ah, yes, FTD how I love thee... no I don't.
Sunday, June 28, 2020
Sunday, June 21, 2020
The Eyes Have It
This blog is written using my experiences of living with my own bvFTD and of being a caregiver for three family members who had FTD and my husband who died of Alzheimer’s Disease. I have no medical degree. I research subjects and attempt to be totally accurate. However, I do have bvFTD and can make unintentional errors. I do not suggest you make health decisions based on this blog without first discussing it with your, or your loved one’s, doctor.
It was only a few years ago that there was a discovery that FTD could be diagnosed earlier by evaluating the retina of the eyes. It was discovered that, even early in the progress of the disease, there was remarkable thinning in the retina on the back of the eyes.
We know that frontal and temporal lobes shrink during the process of FTD. We know that the retina is connected to the brain via the optic nerve. The retina is considered part of our central nervous system. I had major retinal issues in my eyes for over a decade before I was diagnosed with FTD which allowed this study to make sense to me.
I was diagnosed with macular degeneration in (I am estimating here) 2002. Macular Degeneration is caused by the thinning of the retina. The retina is in the back
We know that frontal and temporal lobes shrink during the process of FTD. We know that the retina is connected to the brain via the optic nerve. The retina is considered part of our central nervous system. I had major retinal issues in my eyes for over a decade before I was diagnosed with FTD which allowed this study to make sense to me.
I was diagnosed with macular degeneration in (I am estimating here) 2002. Macular Degeneration is caused by the thinning of the retina. The retina is in the back
of the eyes and can easily be viewed through a dilated eye. Three specialists who all concentrated on retinal issues could not find an explanation of why which is common with this eye disease.
Some of the symptoms of macular degeneration are visual distortions. One example of this is straight lines seeming bent. It also often causes reduced central vision in one or both eyes, the need for brighter lights and increased difficulty to adjust to lower lighting such as in restaurants. Words may become blurry, especially on the printed page. Now for a couple that I did not know, but have been experiencing for years, worsening as my FTD progresses. It can cause decreased intensity or brightness of colors, loss of depth perception and objects may vary in size between the two eyes.
One that surprised me as I researched this today is difficulty in recognizing faces! I experience, and have heard of others with FTD experiencing, increasing difficulty in recognizing faces. For instance, all men with dark hair look like the same person, all women with long blond hair look alike. This is accentuated even further on television. The second that surprised me is difficulty in recognizing objects we are searching for. For me, the most embarrassing is when I am needing the remote control and become out of control from frustration only to have someone point to it and I had been looking right at it.
I am not alone in experiencing these gaps between vision and recognizing objects. Many of my friends with FTD talk about experiencing the same thing.
I am not suggesting that everyone with FTD has Macular Degeneration nor that Macular Degeneration causes FTD in any way. I am merely saying that when I read the research on study whether FTD can be diagnosed earlier via examination of the Retina. Also that the symptoms are quite similar. An extreme example is a headache. Is it sinus, is it stress, is it a migraine or a brain tumor.
Symptoms occur in many similar illnesses.
I hear from many with FTD and/or their caregivers complaining of double vision and, even more so, loss of depth perception. The symptoms I mentioned, such as double vision, loss of depth perception and changes in size of image or intensity of color can all be caused by the two eyes not working together.
Each eye sees its own separate image. The two images are put back together, in the brain, into a single image once more. I have no problem accepting that the vision issues are in the brain not being able to do its part, not the eyes.
Because of this, most of FTD vision issues cannot be corrected by visiting the "eye doctor." I can definitely say, in my case, that the differences between the two images constantly vary as they fluctuate constantly. No eyeglasses, even with prism lenses (which work when it is an eye muscle issue causing double vision) do not help for any length of time, if at all.
I must caution that if you are exhibiting any of these symptoms, you should be evaluated by a qualified ophthalmologist or retinal specialist. As I said above, I do have wet macular degeneration and regularly must get injections of medication into my left eye because my macula is actually degenerating. This does not cure the symptoms I have discussed, but it does keep it from totally stealing all the vision of that eye.
I wrote about eye issues quite a while ago in a blog. However, since the past couple weeks, multiple questions have been posted in the support groups that I decided it was times to write about the vision issues once more. Plus, I understand the issues even more than I did before.
For the caregivers, eye issues may explain things like how the FTD'er used to watch movies, television and/or read and no longer have interest in those. It can also explain many other issues, such as tripping, falling and dizziness. Personally, I must watch my feet when walking because I cannot see any difference in the surface I am walking on. For me, I believe I have mentioned in previous posts on the subject, Strangely, ramps and very small changes in depth are the worst. The absolute worst are corners that are adapted to meet disability standards. There are different slopes, beginning at the sidewalk and the street. To make it worse, the sides also slope so that if you are not smack dab in the middle, there are multiple elevations to deal with. THEN, they mess with the brain by being curved and often painted yellow, both of which make it even more difficult to sense the changes in the pavement.
For those with FTD, if you are not comfortable walking outside, take a look at the sidewalks, cracks and the sloping corners to see if that is one of the reasons it makes walking so difficult. Stepping off curbs is a hazard as well, at least for me, because with no depth perception, I cannot tell how high the step is. I find myself holding onto to something or someone and stepping up or down slowly and carefully in order to not fall. Even then, when my foot hits solid ground, it is a shock everytime.
It is safe to say that everything all do is eye-related. The only exception to that is when I am sleeping. I am able to walk just fine in my dreams. Again for the caregivers, try walking around your house or backyard with your eyes closed. That will give you an idea of what we constantly deal with plus help you find things that should be changed or moved. For me, the absolute worst is when something appears right in front of my face. Moving things closer does not help me at all. If I turn a corner in my hallway and there is an object right there, it startles me even if it has been there for ten years.
One more suggestion, this time for those of us with FTD, I find that watching television with only one eye makes it doable again once you get used to it. I usually drape a cloth over my head to cover the weaker eye. I am also getting good at keeping one eye closed. Please use caution though, when you open or uncover the eye, the shock of the difference in light for the covered eye can make you dizzy for half a minute or so. For me, it is worth learning to remain still for a minute before standing and walking.
Again, to the caregivers, these eye issues can explain a lot of the things that upset you about your FTD'er. Why they do not recognize your face yet still seem to know who you are after a while, why they are constantly losing things (they aren't lost, they just cannot see them... there is a difference). The eye issues can take away the enjoyment of many things they used to love. If you ask, do you see two of everything, they may not realize they do. If you ask them if their eyes make it difficult to walk, you just might get a blank stare. That doesn't mean the issue isn't there. It might be that they simply don't recognize the symptoms exist.
Another suggestion is to decide what are the most important things to them. You can put a large and bright colored sticker on them as an experiment to see if it helps. We all know, though, just because something works for me does not mean it will work for your FTD'er. Experiment with different things to make important things more visible in case you can make their life just a tad easier.
If any of you have any other suggestions, especially to help an FTD'er more able to find things, please let me know because I really could use some!
Some of the symptoms of macular degeneration are visual distortions. One example of this is straight lines seeming bent. It also often causes reduced central vision in one or both eyes, the need for brighter lights and increased difficulty to adjust to lower lighting such as in restaurants. Words may become blurry, especially on the printed page. Now for a couple that I did not know, but have been experiencing for years, worsening as my FTD progresses. It can cause decreased intensity or brightness of colors, loss of depth perception and objects may vary in size between the two eyes.
One that surprised me as I researched this today is difficulty in recognizing faces! I experience, and have heard of others with FTD experiencing, increasing difficulty in recognizing faces. For instance, all men with dark hair look like the same person, all women with long blond hair look alike. This is accentuated even further on television. The second that surprised me is difficulty in recognizing objects we are searching for. For me, the most embarrassing is when I am needing the remote control and become out of control from frustration only to have someone point to it and I had been looking right at it.
I am not alone in experiencing these gaps between vision and recognizing objects. Many of my friends with FTD talk about experiencing the same thing.
I am not suggesting that everyone with FTD has Macular Degeneration nor that Macular Degeneration causes FTD in any way. I am merely saying that when I read the research on study whether FTD can be diagnosed earlier via examination of the Retina. Also that the symptoms are quite similar. An extreme example is a headache. Is it sinus, is it stress, is it a migraine or a brain tumor.
Symptoms occur in many similar illnesses.
I hear from many with FTD and/or their caregivers complaining of double vision and, even more so, loss of depth perception. The symptoms I mentioned, such as double vision, loss of depth perception and changes in size of image or intensity of color can all be caused by the two eyes not working together.
Each eye sees its own separate image. The two images are put back together, in the brain, into a single image once more. I have no problem accepting that the vision issues are in the brain not being able to do its part, not the eyes.
Because of this, most of FTD vision issues cannot be corrected by visiting the "eye doctor." I can definitely say, in my case, that the differences between the two images constantly vary as they fluctuate constantly. No eyeglasses, even with prism lenses (which work when it is an eye muscle issue causing double vision) do not help for any length of time, if at all.
I must caution that if you are exhibiting any of these symptoms, you should be evaluated by a qualified ophthalmologist or retinal specialist. As I said above, I do have wet macular degeneration and regularly must get injections of medication into my left eye because my macula is actually degenerating. This does not cure the symptoms I have discussed, but it does keep it from totally stealing all the vision of that eye.
I wrote about eye issues quite a while ago in a blog. However, since the past couple weeks, multiple questions have been posted in the support groups that I decided it was times to write about the vision issues once more. Plus, I understand the issues even more than I did before.
For the caregivers, eye issues may explain things like how the FTD'er used to watch movies, television and/or read and no longer have interest in those. It can also explain many other issues, such as tripping, falling and dizziness. Personally, I must watch my feet when walking because I cannot see any difference in the surface I am walking on. For me, I believe I have mentioned in previous posts on the subject, Strangely, ramps and very small changes in depth are the worst. The absolute worst are corners that are adapted to meet disability standards. There are different slopes, beginning at the sidewalk and the street. To make it worse, the sides also slope so that if you are not smack dab in the middle, there are multiple elevations to deal with. THEN, they mess with the brain by being curved and often painted yellow, both of which make it even more difficult to sense the changes in the pavement.
For those with FTD, if you are not comfortable walking outside, take a look at the sidewalks, cracks and the sloping corners to see if that is one of the reasons it makes walking so difficult. Stepping off curbs is a hazard as well, at least for me, because with no depth perception, I cannot tell how high the step is. I find myself holding onto to something or someone and stepping up or down slowly and carefully in order to not fall. Even then, when my foot hits solid ground, it is a shock everytime.
It is safe to say that everything all do is eye-related. The only exception to that is when I am sleeping. I am able to walk just fine in my dreams. Again for the caregivers, try walking around your house or backyard with your eyes closed. That will give you an idea of what we constantly deal with plus help you find things that should be changed or moved. For me, the absolute worst is when something appears right in front of my face. Moving things closer does not help me at all. If I turn a corner in my hallway and there is an object right there, it startles me even if it has been there for ten years.
One more suggestion, this time for those of us with FTD, I find that watching television with only one eye makes it doable again once you get used to it. I usually drape a cloth over my head to cover the weaker eye. I am also getting good at keeping one eye closed. Please use caution though, when you open or uncover the eye, the shock of the difference in light for the covered eye can make you dizzy for half a minute or so. For me, it is worth learning to remain still for a minute before standing and walking.
Again, to the caregivers, these eye issues can explain a lot of the things that upset you about your FTD'er. Why they do not recognize your face yet still seem to know who you are after a while, why they are constantly losing things (they aren't lost, they just cannot see them... there is a difference). The eye issues can take away the enjoyment of many things they used to love. If you ask, do you see two of everything, they may not realize they do. If you ask them if their eyes make it difficult to walk, you just might get a blank stare. That doesn't mean the issue isn't there. It might be that they simply don't recognize the symptoms exist.
Another suggestion is to decide what are the most important things to them. You can put a large and bright colored sticker on them as an experiment to see if it helps. We all know, though, just because something works for me does not mean it will work for your FTD'er. Experiment with different things to make important things more visible in case you can make their life just a tad easier.
If any of you have any other suggestions, especially to help an FTD'er more able to find things, please let me know because I really could use some!
Sunday, June 14, 2020
Struggles, Frustrations and Disappointments
It is usually easy for me to realize when I have chosen the wrong topic to address in my blogs. Either I will write the first couple paragraphs to introduce the topic and then sit here and not know where to go with it or I will have written a ways into it and some computer voodoo occurs and what I have written disappears. Today, both happened. So I scrapped that idea and decided to go with what has been bothering me lately.
Anxiety, anxiety, anxiety! It is often one of the symptoms that develop prior to even realizing there is a neurological issue. I remember talking to my doctor about it before we addressed the more obvious signs of FTD. She prescribed a low dose of Ativan to be taken as needed after I made it clear I didn't want to be on anything on a regular basis.
After learning the benzodiazepine anti-anxiety drugs are not a good choice for treating FTD, I was glad I insisted on PRN. The largest risk with these drugs is increased confusion which leads to increased risk of falls. While I still take Ativan on a limited basis when I am out of control, it isn't often. There are other alternatives. Buspar/buspirone is one that is successful in treating many FTD friends on a long term basis. So if anxiety is an issue on a long-term basis, I would suggest you consult your doctor.
Personally, after my husband succumbed to Alzheimer's, my anxiety level decreased significantly. So much so that I did not recognize that I was still experiencing quite a bit. Moving obviously increased it and now, living with my daughter in her one bedroom apartment until our house is finished being built, it is rearing its ugly head once again. Honestly, with her working from home due to the pandemic has not helped.
I am so comfortable here with her that I did not realize how much anxiety I was still having... until I went off on her because we haven't yet begun to choose which of her things we would want in our new house and what should be tossed, sold or donated. After all, we only have 2 months until the move. She was smarter than I was and simply moved into a different room. It wasn't until the next day that I recognized I am still having anxiety related to this move, not stopping to think that it truly is two separate moves for me. When I went in to her room to apologize she laughed and asked "Where exactly is your Ativan?"
The other realization I came to this week was just how much my memory is failing. I had noticed this for a while now, but attributed it to my anxiety. Within the past couple days, though, it kind of slapped me in the face. I was talking with a friend, who also has FTD, and I was totally surprised when he told me his daughter was having his first grandchild. It wasn't until we had been talking about it for a few minutes when I asked "Did I know this already?" His excitement is what triggered me to ask that question. We decided that, yes, we had already had this discussion. It hurts that I would forget something so important in the life of an important friend.
My daughter is now the keeper of my calendar and all my passwords for online accounts. She also stays calm when I lose important things and is patient while I search and search. Eventually, when I give up, she finds whatever it was.
This all saddens me. Not so much because of what is happening to me, but realizing that many of us who became aware of our FTD right around the same time are experiencing similar increases or worsening of symptoms.
It hit me quite hard earlier this week when I was told that the AFTD would probably not be holding a live education conference again in the Spring of 2021. I am not sure they realize just how important this event is to so many of us. To get together, in person, with so many others who are dealing with their own FTD. I have no clue how to explain how important this experience can be to those of us with the disease. Just to be able to hug each other and know we are not alone is simply priceless.
Combine that news with the realization that I don't know how many years we will able to attend was devastating. Right now, there is still so much we can all learn from each other. It truly saddens me to think that we will be losing that forum for another year, not knowing how many years I have left.
I do understand the logistics of planning such a conference require months and months of planning and arranging, so I don't fault them, I just wish it could be different.
I am so comfortable here with her that I did not realize how much anxiety I was still having... until I went off on her because we haven't yet begun to choose which of her things we would want in our new house and what should be tossed, sold or donated. After all, we only have 2 months until the move. She was smarter than I was and simply moved into a different room. It wasn't until the next day that I recognized I am still having anxiety related to this move, not stopping to think that it truly is two separate moves for me. When I went in to her room to apologize she laughed and asked "Where exactly is your Ativan?"
The other realization I came to this week was just how much my memory is failing. I had noticed this for a while now, but attributed it to my anxiety. Within the past couple days, though, it kind of slapped me in the face. I was talking with a friend, who also has FTD, and I was totally surprised when he told me his daughter was having his first grandchild. It wasn't until we had been talking about it for a few minutes when I asked "Did I know this already?" His excitement is what triggered me to ask that question. We decided that, yes, we had already had this discussion. It hurts that I would forget something so important in the life of an important friend.
My daughter is now the keeper of my calendar and all my passwords for online accounts. She also stays calm when I lose important things and is patient while I search and search. Eventually, when I give up, she finds whatever it was.
This all saddens me. Not so much because of what is happening to me, but realizing that many of us who became aware of our FTD right around the same time are experiencing similar increases or worsening of symptoms.
It hit me quite hard earlier this week when I was told that the AFTD would probably not be holding a live education conference again in the Spring of 2021. I am not sure they realize just how important this event is to so many of us. To get together, in person, with so many others who are dealing with their own FTD. I have no clue how to explain how important this experience can be to those of us with the disease. Just to be able to hug each other and know we are not alone is simply priceless.
Combine that news with the realization that I don't know how many years we will able to attend was devastating. Right now, there is still so much we can all learn from each other. It truly saddens me to think that we will be losing that forum for another year, not knowing how many years I have left.
I do understand the logistics of planning such a conference require months and months of planning and arranging, so I don't fault them, I just wish it could be different.
Sunday, June 7, 2020
Weary? Maybe, but never weak!
I had a difficult time getting myself in the right frame of mind to even attempt writing yesterday. In the greater scheme of things occurring in our world, it seemed trivial, totally inconsequential. I even had difficulty getting out of bed. I know I ended last week's blog by saying support groups and politics is not a good mix. I will probably walk a fine line, but I am going to attempt to restrain from discussing politics and religion.
Right now, until our house is finished, my bed is a futon in my daughter's living room. That became a blessing today. She came out and turned on the television to our church's broadcast service. They still are not able to have in-person services but, fortunately, they always broadcast their service anyway. That is what inspired this blog entry.
While Pastor was speaking, several of his points were quickly relating to FTD in my mind. His message was about when we are tired and weary. "When you are weary, you start fighting battles that should not be battles at all. Then we become so tired of fighting those battles that we create more battles."
The difficulty I had dragging myself out of bed was because I knew we had to go to the grocery store, one of my least favorite things. I was trying to come up with reasons why I should not go even though I had not been outside in a full week. I have been feeling exhausted mostly due to the general feeling in the world right now. All the anger, blame and violence was overtaking my entire mind. I was fearful of going out, afraid of what conflict I might find.
Conflict is something I can no longer deal with with my FTD brain. I cannot process things when some in my life whom I respect and love make decisions about what my opinions are. My immediate reaction is one of paranoia. Are they making these assumptions because I have FTD so they figure I am stupid? Or since I have FTD, I should be easy to convince to reverse my thoughts? Unfortunately, with my FTD, I end up verbally lashing out at them no matter what their reason.
Thinking about battles led me to the battles between FTD'ers and their caregivers. Unfortunately, there are many. Caregivers are tired and weary and it is not rare for them to become resentful for the sacrifices they must make. There is also the frustration of not knowing what to do or what choices to make, as well as no idea where to find the energy to keep on going.
FTD'ers become beyond weary of dealing with the illness just as much as caregivers even if in different ways. We cannot take a break from the disease and the difficulties it brings us. We cannot take a respite break or get away from it for a few hours. It is always with us. The only break we get at all is when we are sleeping but, even then, we are plagued by nightmares, hallucinations and general sleeping difficulties.
Then Pastor added, "Just because you are weary, does not mean you are weak." Aha! Thank you Pastor!
Just because I am weary does not mean that I cannot stand up to those who assume what my feelings and opinions are. They are certainly entitled to jump to their own opinion. That they do, does not mean I am too weak to choose to ignore their opinion or comments. I am not too weak. I can tell them that they have no idea what my opinions are and that, yes, I have FTD but am still capable of making informed opinions and choices. And, yes, I am not so weak that I cannot decide who to block on social media.
I can be weary yet still strong enough to tell those caring for me that they are not experts in FTD because they knew someone who had Alzheimer's. I am strong enough to tell a doctor that s/he must do some research on the disease or I must go elsewhere.
I can be weary yet still strong enough to tell family, friends and caregivers that I need some "me" time... that I need to go into my room and retreat to silence and allow calmness to come over me... before I explode.
I am weary when I am not being included in making decisions for myself.
This was true for me when I was my husband's caregiver just six months ago. I was not too weak and weary to serve as his advocate. When hospice turned him down, I found the means to obtain the equipment and supplies I needed to make the time he had left just a little easier for him. I was also not too weak to stop trying to get hospice in to help and I succeeded.
Those of us with FTD, those who love someone with FTD or care for someone with FTD are often weary... but we are not weak. Anyone dealing with this disease just cannot be weak.
Right now, until our house is finished, my bed is a futon in my daughter's living room. That became a blessing today. She came out and turned on the television to our church's broadcast service. They still are not able to have in-person services but, fortunately, they always broadcast their service anyway. That is what inspired this blog entry.
While Pastor was speaking, several of his points were quickly relating to FTD in my mind. His message was about when we are tired and weary. "When you are weary, you start fighting battles that should not be battles at all. Then we become so tired of fighting those battles that we create more battles."
The difficulty I had dragging myself out of bed was because I knew we had to go to the grocery store, one of my least favorite things. I was trying to come up with reasons why I should not go even though I had not been outside in a full week. I have been feeling exhausted mostly due to the general feeling in the world right now. All the anger, blame and violence was overtaking my entire mind. I was fearful of going out, afraid of what conflict I might find.
Conflict is something I can no longer deal with with my FTD brain. I cannot process things when some in my life whom I respect and love make decisions about what my opinions are. My immediate reaction is one of paranoia. Are they making these assumptions because I have FTD so they figure I am stupid? Or since I have FTD, I should be easy to convince to reverse my thoughts? Unfortunately, with my FTD, I end up verbally lashing out at them no matter what their reason.
Thinking about battles led me to the battles between FTD'ers and their caregivers. Unfortunately, there are many. Caregivers are tired and weary and it is not rare for them to become resentful for the sacrifices they must make. There is also the frustration of not knowing what to do or what choices to make, as well as no idea where to find the energy to keep on going.
FTD'ers become beyond weary of dealing with the illness just as much as caregivers even if in different ways. We cannot take a break from the disease and the difficulties it brings us. We cannot take a respite break or get away from it for a few hours. It is always with us. The only break we get at all is when we are sleeping but, even then, we are plagued by nightmares, hallucinations and general sleeping difficulties.
Then Pastor added, "Just because you are weary, does not mean you are weak." Aha! Thank you Pastor!
Just because I am weary does not mean that I cannot stand up to those who assume what my feelings and opinions are. They are certainly entitled to jump to their own opinion. That they do, does not mean I am too weak to choose to ignore their opinion or comments. I am not too weak. I can tell them that they have no idea what my opinions are and that, yes, I have FTD but am still capable of making informed opinions and choices. And, yes, I am not so weak that I cannot decide who to block on social media.
I can be weary yet still strong enough to tell those caring for me that they are not experts in FTD because they knew someone who had Alzheimer's. I am strong enough to tell a doctor that s/he must do some research on the disease or I must go elsewhere.
I can be weary yet still strong enough to tell family, friends and caregivers that I need some "me" time... that I need to go into my room and retreat to silence and allow calmness to come over me... before I explode.
I am weary when I am not being included in making decisions for myself.
This was true for me when I was my husband's caregiver just six months ago. I was not too weak and weary to serve as his advocate. When hospice turned him down, I found the means to obtain the equipment and supplies I needed to make the time he had left just a little easier for him. I was also not too weak to stop trying to get hospice in to help and I succeeded.
Those of us with FTD, those who love someone with FTD or care for someone with FTD are often weary... but we are not weak. Anyone dealing with this disease just cannot be weak.
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