I said tired, I really should say exhausted. Someone said "Why are you so tired, you don't do anything?" Some days, getting out of bed is the only thing I can do. I have actually experienced days when I was literally too tired to eat, much less to fix a meal. There are days I must force myself to even get out of bed. Fortunately, at this point, those days are still in the minority for me. For others with FTD, it can be every day.
It doesn't matter what source of information you are using to learn about FTD, you will read the words "fatigue," "loss of energy," "extreme tiredness," and others that mean the same thing. Obviously, those with FTD will experience tiredness and exhaustion just like those who do not have FTD. If you do too much work or take on too many tasks in a single day, we are going to feel tired or exhausted just as anyone does.
However, there are even more things that you would not think of as being exhausting. Trying to cope with your surroundings is something that is greatly exhausting. If there are too many noises, too many distractions or just being in surroundings different than your usual, it leads to tiredness and then to exhaustion. This is why many of us hate to shop. There are too many people, too much background noise, too many colors or too much commotion going on. To those of us with FTD, there is no such thing as making a simple quick trip to get something. Even visiting friends or family can have the same effect.
FTD'ers do not adjust well to an increased activity level. I used to do hours of housework or yard work in a single day without even thinking about it. Now, if I work even a small portion of that time, I am pretty worthless the rest of the day. The peril of this exhaustion is that exhaustion often brings irritability. I will admit to not being the most pleasant person to be around when I am exhausted... not even close.
It is not only physical fatigue that we face. Of course, if we are having trouble sleeping, we are also going to be more exhausted, tired and irritable. This is true for the FTD'er, the caregivers and anyone else with sleep issues. If sleep issues are affecting the one with FTD, it should definitely be discussed with their doctor. There are medications and other strategies that can help.
Just getting through a day for someone with FTD can be exhausting. Think about how it might feel if you have to struggle to think of words that you want to say or struggle to getting the word out correctly when you do. The stress of trying to remember things and of trying to remember how to do things that used to be second nature is exhausting. Every activity, every thought, every conversation can all be exhausting. The brain needs energy. If the brain is struggling, it becomes exhausted just as your body does when you do too much. I have read that the brain of someone with FTD, or any other dementia, needs more rest than the body does. A damaged brain must work harder than a brain still totally functioning, therefore, more energy is required. This means more sleep is needed. If someone with FTD is sleeping or staying in bed for 12 hours, it is because their brain needs those hours of rest.
I have written many times about symptoms of FTD, including abnormal interest in sex, no filter between brain and mouth and inappropriate actions (disrobing outdoors, peeing outdoors, hugging strangers...). If we think about it,quite often, those of us with FTD realize that we act inappropriately, such as laughing at funerals, being brutally honest with someone, revealing private information. I cannot begin to tell you the number of times I will say something insulting to someone because that is the thought that pops up into my head. Don't tell me a secret and expect me not to tell someone about it. I realize I do these things so I am constantly reminding myself to not do them. For me it is akin to someone placing a kitten on my lap and telling me to not dare to touch it. The entire time, I would be fighting my instincts to pick it up, pet it, talk to it and cuddle it. I adore kittens and it would be a tough battle to obey those instructions. The new instincts FTD has brought me has often led me to say something, totally out of the blue, then wonder why in the world I said it.
When I am with others, I must constantly remind myself to keep my thoughts to myself, not to touch people or do anything else inappropriate. It is exhausting to fight your instincts, even when those instincts are not the same as they were pre-FTD. If I go into a waiting room, a restaurant or someone's home, I must be thinking of where I would feel most comfortable. I search for a quiet corner where no one can walk up to me from behind. Then I sit and keep telling myself "It's okay, you can do this." "Uh-oh, where is the bathroom?" These thing that those without FTD never need to think about can be exhausting.
If you are a caregiver and you notice that your loved one is more irritable, uncooperative or doesn't want to do anything, it may be time to stop and think. Did they do something out of the ordinary pace and circumstances of their normal day? You may want to keep a calendar or make notes of activity levels and behavior levels. You might find a pattern and be able to adjust their schedule accordingly.
I can be exhausted for an entire day after needing to do something out of the comfort of home or if anything out of the ordinary occurs. If it is something way out of line with my ordinary routine, the fatigue can last for days, a week or more. I will give you an example.
My sister got married last weekend. I really enjoyed the preparations for it. I was able to recapture some of my creative juices and help design things and shop online for necessary items. (I think I may have mentioned this if a blog or two.) I even made the wedding cake. I simplified it and it was not even close to being as intricate as any of the cakes I made before, but I did it. I laid out a schedule of what to do when and in what order. I had someone here to help when I needed it. My sister and brother in law arranged things to make the wedding day easier for me. He picked me up an hour or so before anyone would arrive so that I could settle in and he arranged for someone to drive me home before the loud music started. My sister had arranged the head table in such a way that I was protected. I have said before how aware and understanding she is of my FTD. With their advance planning, I had a blast. I think it was the most fun I have ever had at a wedding.
I did not get tired that day. Sometimes, I believe it is pure adrenaline that allows me to have a busy or active day when it is a fun event. I pay for it afterward though. It has been a week since the wedding. I am still exhausted, sleeping longer than normal, having no interest in doing things and no energy to do them anyway. I expect to be the same for another week or so. Believe me, it was worth it. I am also fortunate that I can recognize this in myself. Many people with FTD are not able to recognize what is affecting them or why.
I must not ignore the caregivers when talking about exhaustion. Not only are they trying to keep the home and family running, they are caring for the one with FTD. That in itself is an exhausting challenge. That is why I am often reminding caregivers of the need for respite care for themselves, even if only for an occasional afternoon or evening. It is so easy to say that. The reality is much more difficult. It can be very difficult to find family or friends who are willing to pitch in and help. It's not like when a family member has surgery or a brief illness. Family and friends often come through at times like that by bringing a meal, offering to pick things up at the store or stop by with a thoughtful gift. With FTD or any other long illness, they either forget or decide that it is your new normal and you can deal with it on your own. This baffles me because, to me, it is common sense that when someone has a lengthy illness or chronic disease, the need is even stronger than for a brief recovery period.
My advice for caregivers is to beg if necessary to get friends or family to give you a break. If they won't come and fill in for you, it is still appropriate to ask them to bring a meal once in a while or offer to run errands. If no one comes through or even if they do, call your local Department of Aging, Senior Center, adult day care programs (If you are lucky enough to have any in your area.) or even nursing homes who offer a short respite care (If you are fortunate enough to be able to afford it.) I get very frustrated when those who are considered experts make it all sound so easy. Not everyone has family nearby or close enough friends who are willing to help out. Not everyone can afford paid respite care or day care. Don't let that stop you though, it doesn't cost anything to ask for help. You may have to get past the feeling that you should be able to do it all yourself or that you feel like you are begging. If you have those feeling, it is worth a little discomfort to make those calls for help. We all need help sometimes. I will remind you that the Association for Frontotemporal Degeneration does offer limited funds for respite care.
Something that I find interesting... It is often the people who have always been the first in line to help others who have difficulty requesting help for themselves. Please remember that you must take care of yourself and that it is perfectly okay to ask for help to accomplish this. One more thing, please do not ignore your own health. Make sure you get yourself to the doctor for regular check ups, not just your loved one. Being a caregiver is not only exhausting, it is an added risk to your health.
So, yes, I am tired of being tired. I am, though, very lucky that no one expects me to be able to do even close to what I used to do. Well, maybe with the exception that I should still be able to cook dinner every night... or pay the bills... or be the full-time caregiver for my husband. Yikes, no wonder I am exhausted sometimes!
.
No comments:
Post a Comment