Experiencing Grief

I experienced the loss of two of my dearest family members within the last three months. After my uncle's death, my aunt could no longer live alone so she moved into a nursing home until she died in April. I believe I mourned for her the entire time she was in the home, even though I was able to talk to her on the phone. 

Those of us with FTD are supposed to not care because of the apathy that befalls us, as well as the loss of empathy and sympathy for others. Those may be true facts, but it hasn't been protecting me from the feelings of grief. I must admit that I do not care if anyone else is feeling grief and sadness, but I do feel it in myself.

I decided to do some research on the subject to find out if the reason I can not let go of the grief is possibly related to my FTD. There just is not much information about grief in those with FTD. There is a huge amount of information about grief in caregivers, but not for FTD'ers themselves.

The few articles I found on the subject tended to agree with each other. Someone with FTD suffers a lot of losses along the course of the disease. I will start with that. Two of the writers mention "Little Deaths" that FTD'ers suffer. We may lose a job that we enjoyed and had been doing for years. This may also lead to financial issues which worsen that loss. This is truly a loss for someone with FTD and something that is mourned. The other big one is losing the right to drive. This can make an FTD'er to mourn the loss of the independence they had when they could go where they wanted, when they wanted. There are many others including no longer being able to do the activities and hobbies they did before, losing the ability to read and write or even think of the words they are searching for and, a big one here, the loss of memories.

Grieving, whether from the death of a loved one, any of the events I mentioned or anything else that they view as a loss can trigger grief. They may not even realize exactly what is making them feel that way. They may become restless, irritable, display an overwhelming feeling of sadness or just seem lost.

Caregivers also feel these losses their loved one is experiencing as well as their own grief over the overwhelming task of being a caregiver, financial issues, having to do everything with no help or the loss of freedom and time for themselves. The difference is that caregivers and anyone else without dementia can understand the reality of the loss. If the grief is caused by a death, the caregiver is capable of changing the feelings of grief into memories and have the ability to understand what those feelings are connected to.

Those of us with FTD, or any other dementia, often can no longer be able to understand why they have the weight of this enormous sadness, anger or a general feeling of something being wrong. Unfortunately, even while dealing with their own grief, the caregiver needs to find even more patience within themselves to comfort their loved one.

In dealing with the loss of a person, the person with dementia should be told right away. Otherwise, they will sense that something is wrong just from being around those who already know. When telling them that someone has died, use that word. They may not understand "gone to Heaven/a better place," "left us," or even "passed away."  It may help to be more attentive to the FTD'er, including more hugs or kisses. When you are discussing the person who has died, be sure to use the past tense and reminisce with them if they want to do that. Try to tell them when they are relaxed and at a time of day when they are more aware of things.

One of the issues common among the articles I found was that not telling the person with dementia is not going to be effective. They are going to sense something is wrong and become confused. If they are told a story about why the person is not around, they will recognize that what you told them does not match their reality. The other issue they agreed on was, if they are at all able, to allow the person with dementia to attend the funeral. It is believed that by being included, the reality of the situation is easier for them to understand. If they are able to attend, make sure someone is always with them to answer questions, reassure them and remove them if they become upset.

As I said, those with dementia may be grieving over things other than a person's death. These are the "Little Deaths" I mentioned before. Included are things such as loss of a job, any ability they previously had, loss of driving privileges and the independence that comes with it and the loss of memories. These little deaths can affect someone with FTD very similarly to the death of a loved one.

The FTD'er may not even realize that it is one of these things that is causing them to feel more angry, restless, aggressive or withdrawn. It could also lead to a worsening of symptoms. If these types of symptoms continues, you may have to call or schedule an appointment with their doctor. There are medications available that can help relieve some of these negative symptoms. 

Even more important than medication, though, is understanding, patience and openly recognizing what is happening. The caregiver can say something like, "You seem restless/angry/sad today," "Is there something making you feel that way? Is there anything we can do to help you feel better" or "Would you like to talk about it?"

Caregivers can experience many of the same senses of loss that can lead to reacting in many of the same ways, such as anger, sadness or resentment. It is important to realize why you are feeling this way and determine if there is any way to improve those things.

I will say, again as I have in previous blogs, how important respite care can be for the caregiver. I do realize that it is so easy to talk about but not always so easy to arrange. Don't be afraid to call a family member and say "I need you to come over for the day on Saturday to stay with mom because I am not able to be here." Don't say "Could you come over some time so I can have a break. Be specific. Contact any agencies in your area to see if they offer respite services. Plus, remember that the AFTD offers respite grants to enable the caregivers to have a time of respite. 

Researching this subject was good for me. Yes, I am still grieving and now realize that I will be for sometime. I also believe the sad feelings will abate eventually. Just yesterday, something exciting happened for me and my first thought was that I needed to call and tell them. Oops, can't do that anymore. Later, out of the blue, my sister said to me "You know who else would be very proud of you? Uncle xxxx and Aunt xxxx." I knew she was right and it made me feel close to them for just a few minutes. Of course, I am still grieving over not being able to follow recipes and, most definitely, not being able to drive and all those other little deaths that don't seem so little. I also know that, for now, I can cope with it all.

Could You Be the Next Andy Warhol?

One of the worst things about FTD, to me, has been the loss of my artistic abilities. It is a big part of the reason for why I tend to feel useless and bored.

I mentioned a couple weeks ago that my sister is getting married soon (3 weeks from today) and I have been helping as much as I can. Before FTD, I was an artist. I did a lot of painting, mostly folk art, and was an award-winning ceramist. I don't say this to brag, just to explain that I used to have artistic abilities. After FTD, all that seemed to disappear. I find it quite interesting because many with FTD have actually developed more artistic abilities after being diagnosed with FTD.

The night before leaving for the AFTD Conference, I could not sleep because I knew I needed to get up at 4 a.m. Around one or two in the morning, I had an idea of a cake to make. I did not mention, but I also used to design and make cakes. I guess that is a form of art as well. The theme of the wedding grew from that cake design.

I also mentioned that she was allowing me to help with a lot of things. Doing some artistic work, like designing the invitations, making favors to fit the theme and helping with the decorations, has been such a good thing for me. My sister keeps telling me that I come up with ideas that are flashes of brilliance. I argue that, no, merely occasional flashes of a flickering candle. Either way, finding that some of my artistic instincts are still in my brain has been beyond satisfying. No, it's not the kind of art I used to do, but it has released some of the energy I always found in creating artwork.

Being allowed to help with this wedding has helped me feel great the past few weeks. Now, it happens that I also had another anti-depressant added to my medications so that probably helped as well. I don't care which it is, though I suspect a combination of the two, I am loving it. 

I am pretty much done with the things I have been able to do. The only thing left is to make the cake that I designed that night. This is pretty darned scary for me. Even when I was making cakes semi-professionally, I avoided wedding cakes because they are so important to the bride that it made me too nervous. I have only done four in my entire life. In this case, I know my sister and brother-in-law will love it no matter what, because I am making  it. At least I know it will taste good even though it might not meet my pre-FTD standards!

I am not the only person with FTD who have found something to keep themselves busy and to make them feel that they can still contribute. One of my FTD friends found a way to continue gardening. Another has started doing woodwork. A handful of them have found artistic talents that they did not have before and have been producing beautiful paintings. Yet another one knits the most wonderful potholders and her niece sells them online and donates the proceeds to the AFTD. 

I encourage everyone with FTD to try to find something creative to do. Even adult coloring books can provide the satisfaction of creating something. If you had musical abilities before FTD, try them again, perhaps with simpler tunes. You can also just sing along to the music you love most. If you used to dabble in any form of art, try to do it again. Like with music, it doesn't have to be something complicated. If you can still follow a recipe, bake some cookies. 

If you have grandchildren, tell them stories about their family or stories you can remember. If you don't get to spend much time with them, record these things for them. These recordings will probably be their most cherished possessions as they get older. I bought a recordable book, Curious George, which was my favorite as a child. I do not have any grandchildren yet, but when I realized that I may not live long enough to meet future grandchildren, I became extremely sad. By recording this book that they could hear Grandma reading to them, it made me feel much better. My daughter has still not taken in home because she did not want to consider me not being here. It is in her old bedroom here for when she is ready.

It is not just FTD'ers who can benefit from seeking the satisfaction of creating something. It could help caregivers as well, something to occupy their minds for a few hours. Perhaps it could remind them that there is more inside them than just the ability to care for someone with FTD. They might have to arrange for someone else to sit with their FTD'er for a few hours so they can get out, even if you have to beg everyone you know in order to find someone willing. Take a class or go to one of the Wine and Paint parties. I sure wish I could go to one of those, they look like a lot of fun. 

Obviously, not everyone has artistic talents, but like my friend who gardens, it seems most everyone has a talent, hidden or otherwise. It can be something like building with Lego's, learning to spin a Fidget Spinner, coloring in an adult coloring book or even playing with Play Dough. You don't have to perfect or even stay inside the lines. No one will care. No one will judge you if you are doing something that children can do. Try to find joy in the colors, in the music. Stop and remember Andy Warhol. For goodness sakes, he painted a soup can and became a famous artist. Maybe we should start a business selling art by FTD'ers. We could created modern art with just splashes and slashes of color. 

After the wedding, I think I just might take my own advice. I have thought about doing some abstract painting. Perhaps now I will find the courage to do it!

Like my sister keeps telling me, it doesn't have to be perfect. Actually, she says "Barbie perfect" because that was what I told her when she started planning her wedding. She tends to be a perfectionist so I kept telling her it just has to be ordinary person perfect.

Recognizing When You Need Help

There are no  medications that help FTD nor any that prevent it. What we can do, however, is to use medications that can treat the symptoms. One of the common symptoms of FTD is depression. I often say, and probably have in previous posts, "How can you have FTD and not be depressed?" Just knowing you have a life-ending disease is enough on its own. All of the many frustrations and irritants of the disease can lead to depression as well.

Personally, I have been on an anti-depressant for quite a few years now, even before my diagnosis. Was the need for the medication related to the undiagnosed FTD? Truly, there is no way of knowing. At the time of diagnosis, I was taking Wellbutrin and it seemed to be working quite well for me with no real side effects. Up until recently, it was enough and kept my depression in control.

Six weeks ago, I went to see my doctor for a routine check up. When she walked in the room, I looked at her and said "I need help!" She is a great doctor and a wonderful person. She is the one who insisted we keep seeking a proper diagnosis even after several doctors had said it was depression or that the symptoms of FTD were all in my head. Before that she saw me through a year of dealing with Hodgkin's Lymphoma. In other words, she knows me very well. 

Hearing my plea for help, she immediately sat down and, so very kindly, asked what kind of help she could give me. I knew I needed another or a stronger anti-depressant. I had recognized the symptoms of not wanting to do anything, yelling all the time and being just plain nasty to just about everyone. I would fly off the handle and then spend the rest of the day feeling horrible about it. So, I had asked others with FTD what depression medications they were taking and I read several articles that recommended the type of anti-depressants was most effective and the least dangerous for those of us with FTD.

We decided to add Zoloft and started out with a very low dose for a week and then doubled it the following week. Within two weeks, I was feeling so much better, like my old self. Well, my old self with FTD. I have not been yelling much at all and things are much more peaceful in our household. I have also found just enough more energy to actually accomplish some things. Certainly not to the point of pre-FTD, but I can do one or two things a day. I can also have a conversation with my husband without flying off the handle at him.

Today, was my six-week check-up to see how the meds were working for me. The doctor walked into the room, looked at me and said "My Cindy is back!!!" I couldn't say it any better myself. She told me that as soon as she walked in the room, I smiled my great smile and she knew the meds had worked. She went over all the things I should watch for to know if we needed to increase the dosage and any possible side effects. She did not have another patient waiting so she took some time to chat and discuss how everything is going.

The past few weeks have been extremely stressful. There were two deaths in my family which was bad enough in itself. It was an aunt and uncle whom I was extremely close to and I miss them terribly. That part, I could deal with. It is what came next that was really hard to accept. It led into an apparent family feud. It seemed like I was being left out of the loop and not receiving any information as to the status of everything. I worked around that though by calling the nursing home, the estate attorney and others. It was like pulling teeth sometimes to get information and I was very stressed and, I must admit, angry. But, I was able to talk to my aunt almost every day on the phone and, even on days she no longer had the strength to talk, I was able to tell her I loved her. I guess I should explain that they lived over 100 miles from me. Since I can no longer drive, it was horrible to not be able to get in the car and drive up there.

Now that they have both passed (my uncle died in February, then my Aunt died in mid-April) and both memorial services have been held, it is obvious that there are fractures within the remaining family that might never heal. It is such a shame that these things happen in families, especially at the time of deaths when we all need to lean on each other. I suspect part of the issue is that I was named in my aunt's will and none of the other nieces and nephews were. I did not ask her to put me in her will. In fact, she used to joke that I was not in her will so I could quit being nice to her.

Okay, I have gone into way more personal information that I probably should have. The reason I am telling you all this personal stuff, is to point out that if I had not gone to my doctor and admitted that I needed some help, I would have had an extremely difficult time surviving the past few weeks. I had no idea that it was all going to happen the way it did, but if I had not gone into my doctor and admitted to her, and to myself, that I needed help, it could have taken a huge toll on me. In fact, after talking about all this stress with my doctor, she said she was certain that, in the shape I was six weeks ago, I would not have made it through.

The point I am trying to make is that you, both those with FTD and the caregivers, need to recognize and admit when you need help. There is absolutely nothing wrong with admitting that you are suffering from depression, especially knowing that there are medications that can help.

In addition to the medication side of depression, I do still see my psychologist who specializes in dementia. Between the medications and having someone to listen to me and suggest ways of coping, I am doing pretty darned well. Recognizing that you need help and support is a good thing. Doing something about it is even better.

Again, the feelings of depression, frustration and irritability affect both those with FTD and the caregivers. We both need to "be the best we can be" if we are to face this disease together. I strongly recommend that if you aren't feeling like yourself or realize that you are irritable or depressed, please see your doctor and ask for help. If you don't and you wait until it is a crisis situation, it can be much harder, or even impossible, to fix.

Common Sense Ideas

I fell outside today. I slipped in some mud and my legs were not strong enough to recover. Unfortunately, I laid in the mud for about 15 minutes while I yelled for my husband and banged on the window. He never heard me. I finally got turned face down and crawled about 15 feet through more mud and muck. Once I was on the deck, I was able to get upright and walk into the house. 

It is not unusual for me to fall and, other than some complaining muscles and joints, I am fine. The reason I am mentioning this is that now that Spring is finally here, I have a bit of common sense to pass on to the caregivers.

When your loved one is outside and trying to do something other than just sit and enjoy the sunshine and warmth, try to make sure someone is close by. Obviously, you don't need to be right next to them, but within hearing distance. If you cannot manage this, try hanging a whistle around their neck so that they can make a loud enough racket to get someone's attention. 

Many years ago, when my husband was racing cars and we were working as safety workers at the professional races, we had to wear whistles.  I was concerned about the lanyard strangling me if it caught on something.  I took knitting markers that are used to mark your spot when you are knitting. They were open circle, the perfect size and would pull apart without much effort. I relay this story so that you can do something similar if you choose to use a whistle on a lanyard. They could also keep it in their pocket. 

The other bit of common sense, check on them occasionally. Make sure they have not fallen or become injured, started to develop a sunburn or wandered off. If you are inside the house, perhaps leave a window open to hear a distress call. I can only vouch for myself, but when I am out sitting on the deck, I often see things that need to be done. Maybe it is something as simple as a piece of paper flying around in the yard or a weed that needs to be pulled. I guarantee that this little thing will bug me long enough that I will get up and do it, even when I have promised to just sit in my chair.

Oh, and don't forget the sunscreen. Many of you have probably read this and said "Duh" but I must admit it is something I never thought of before. Not in my caregiving role nor now with me having FTD. 

On a happy note... My sister is getting married in a month! She has been allowing me to do some of the necessary things for her so that I can actually feel a part of the planning and preparation. She has had me searching for some things on the internet and even allowed me to help design and print the invitations. It is wonderful to feel useful and needed for a change! It is actually difficult to explain just how much I have loved doing these things. Could she have done them herself? Probably, but she knew I wanted to be a part of what was going on.

Not being able to do the things that I (and others with FTD) used to do is a constant frustration, especially when no one else is picking up the slack and doing them. This often results in huge arguments because some of the things I can no longer do seem like simple tasks. It is easy for the caregiver to become frustrated because it isn't getting done. The frustration is understandable because they already have so much more responsibility dumped on them and they literally do not have the time nor energy to do it all. It is important for both the person with FTD and the caregiver to not let things like this fester until it leads to a blow up by one or the other.

It is extremely important to discuss things like this, not when either of you is upset, to see if you can find things that the one with FTD can actually still do.

For instance, a few times, while unloading the dishwasher, I cut my finger on a knife. I became afraid to do it after that, so I stopped. It was one more thing that my husband had to start doing. Now, I unload the bulk of the dishwasher, but leave the silverware bins for him to empty. Once he has unloaded the sharp things, I can finish it. Problem solved... without screaming and resentment.

For many of us with FTD, we need to feel like we can still contribute and accomplish things. It may be a simple thing and would not take much time for the caregiver to do, but it can make a world of difference for the one with FTD. I love being able to unload the dishwasher again as well as a few more little tasks around the house. I need things like that to make me feel good about myself and those opportunities do not happen much anymore.

I know that all the things I have mentioned this week are things that most of you have thought of on your own or picked up along your journey with FTD. Sometimes, though, it is the simple bits of common sense that we don't see. I never thought that I could not get my husband's attention if I fell. I also don't stop and think, before getting up and doing some little thing in the yard, that I don't have my cane with me right then. That definitely contributed to my fall today. It is just common sense and my husband has bugged me about it many times. Sometimes a little reminding, even if it becomes pestering, can be a good thing, even if I get angry when he does it.

It is extremely difficult for the person with FTD to realize that the pestering is for our own good. It is also necessary for both to recognize when it is time to back off. Sometimes it would make more sense to just carry the cane outside and say "You forgot this."

Something interesting happened between writing the last paragraph and this one. My sister and her fiance stopped by for a short visit. She took one look at me and said, "You fell again, didn't you?" There is just no hiding some things from a sister.