By now, I think that most, if not all, of us who have experienced dementia in any way, have heard of sundowning. I do run across individuals from time to time who give the symptoms and wonder why their loved one is experiencing these things making their life difficult.
Some one related about how the FTD'er they were caring for seemed irritable and restless, confused and disoriented and would wear out the carpet if they did not make her sit down. After I said the word "sundowning", the response was "I always wondered what that was." She confirmed that the symptoms worsened in the evening and night.
I was shocked to learn that sundowning also occurs in individuals who show no other signs of dementia. Then I thought about the changes in season. Many people I know would comment about how difficult it was for their body to respond to these changes or how difficult it was for their pets to adjust. Some brains will not easily adapt to the change. It is no wonder sundowning occurs and is worse for those with dementia. Even the change in seasons, the moon and alignment of the planets can affect some.
I found where one medical scientist believes that it truly does mess up our "body clock." I did not realize that this truly existed. Since FTD and other dementias deteriorate our brains, it makes sense that dementia could definitely worsen this experience. Sometimes, people forget that the brain controls absolutely everything in our body. If we are experiencing or seeing someone else experiencing the symptoms I mentioned above, it almost certainly originates from the brain.
When the hours of daylight gradually shorten or, in the case of seasonal time changes, sudden changes, it means less light and a greater than normal amount of shadows. It can cause fear which triggers all the symptoms associated with sundowning.
There are many suggestions on how to reduce sundowning. Try to keep the daily routine the same. Don't allow naps except early in the day. Personally, I can't control when I nap. When I am exhausted enough, I fall asleep. Increase the inside lighting as it gets darker. Close out the darkness with blinds or curtains.
One interesting thing I read suggested that the one with FTD may be picking up signals from their caregiver to trigger it. As the day goes on, caregivers get more and more exhausted. They may, unknowingly, be less patient, sharper voiced or moving faster to try to get everything done. If the caregiver's schedule and attitude change, it makes sense that the FTD'er can pick up on that and then their own changes.
When my husband began sundowning, I bought a table clock that shows the day of the week, time of day (morning/afternoon/evening/night) and the actual time and date. Once he got used to this, it seemed to help quite a bit. Now, though, he will argue with me about it.
One night last week, he came into my room at 3 a.m. which is often the time he wakes up confused. He insisted he be given his morning pills. When I explained it was 3:00 in the morning, he said, "No, it's not. I need my pills and my breakfast." I tried showing him on his clock. When that didn't work, I opened the curtains and showed him it was dark out. His response was something like "Huh, that's weird. NOW can I have my morning pills?
The only other thing I could think of was that he was hungry. Since he always takes his morning pills with his breakfast, it may have become all one event to him. I let him drink a bottle of Boost and got him settled back into bed. When I woke up this morning, he was sitting in his recliner, sound asleep with his head nearly touching the arm of his chair. (That would have made my neck hurt for a week.) I knew he had been asleep like that for a while because infomercials were on the television instead of sports.
When I tried to give him his breakfast and morning pills, he insisted it was nighttime and he should have his evening pills, not morning ones. I showed him how bright and sunny it was outside but again that did not work. I finally came up with "I think I forgot to give them to you this morning, so you need to take them now." It worked, he took the pills, but had no interest in breakfast.
Fortunately, this was a rare occurrence. I moved into the bedroom right across from his and keep my door open so that I can hear if he gets up, especially if he leaves his room. Perhaps I was more tired than usual or, even, that he was particularly sneaky because he still wanted his breakfast. There is no way know. I do know that it is taking a while to get him back on a time schedule.
Isn't that the way it is with FTD and other dementias? We just never know for sure. We don't know for sure why some with FTD experience sundowning and others do not. We don't know for sure why some get violent and others get sneaky. The only explanation is that it most likely it depends on the areas of the brain that are destroyed by FTD and the order in which they are destroyed as well.
This fickle pattern is also why I get questioned, nearly every week, about why I am still able to care for my husband (albeit with help for a few hours during the day) or why I can still write and their loved one cannot do much of anything. In addition to reasoning and planning skills (executive functioning) being the first to succumb to FTD, it stole my artistic abilities early on as well. Yet, many others with FTD have developed them. I have difficulty with motor skills which often lead to falls while others don't. Some can follow movie plots and watch movies and television for hours. I can handle about 45 minutes, the length of one hour of television, yet I can still read. I often stutter or need to search for correct words when speaking. When writing, it is easier for me to find the words. Of course, it is typing, not writing by hand. That went a long time ago. I can still do it, but no one can read it.
I don't need to give you more examples. I will say the expression I hate, "It is what it is." The only thing we know about lost abilities is to narrow it down by what location in the brain controls that particular thing. We cannot predict what will go next or what will stay.
All we can do at this point is to continue to encourage and support FTD research. For those who are able, I encourage you to consider enrolling in research studies. I also encourage anyone with FTD to donate their brain to research. You can do this without donating the entire body. The procedure differs from state to state, but you can easily seek out those in your state who accept the donations for information on how to arrange for it to happen once you have died. A local funeral home should be able to help you as well.
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