Thursday, June 28, 2012

Dementia Roller Coaster

Like many other illnesses, dementia does not progress in a linear fashion. One day your loved one may be unable to speak and the next day they are very chatty. One day they are so fatigued that you can barely wake them up to eat, the next day they can get out of bed on their own. It is a roller coaster ride of up's and down's.

As you may have read in my last post, Mom has progressed nearer to entering into end of life issues. Within a weeks time she became bed ridden, unable to hold up her own weight, rarely opened her eyes, and talked infrequently.

Today, Mom is a very different person. Her eyes were open the whole time I was there visiting. She looked brighter, had less Parkinson's shaking, and less anxiety. And, she was talking alot compared to where we were a day ago. Still she could not always get out what she was trying to say, but she could answer with more than just "yes" or "no" and was even using short sentences.

For Mom, and for many people with dementia, they will perk up and do better when they have company, particularly people they do not see on a daily basis. My brother and sister-in-law are in town and that really helped Mom perk up today. It is wonderful that she will have a few days of increased activity and fun while they are here. She is definitely on the up side of the roller coaster ride today.
Cedar Point Iron Dragon, Photo by Jeff Norris

With all the up's and down's, this roller coaster ride can be quite unnerving. You are never sure what each day holds and every time things get worse you don't know if it will stay that way. The other day I was worrying that I would never have increased communication with Mom, and that was scary. And yet today we were blessed with a great visit, which is wonderful. But is is also emotionally hard to handle. You can't prepare yourself for anything. Any increase in ability means you have more hope that your loved one will get better, yet you know in reality with dementia that even if you have a few months of better, eventually the bad will come back again. You feel like you barely get a breather before another severe drop in health occurs.

I also think of how hard the up's and down's must be on Mom as well. To be exhausted just trying to open your eyes and answer "yes" or "no" one day and then a few days later be able talk about how good lunch is. True, she has dementia and she probably does not technically remember how she was doing a day or two ago, but I do think on some level emotionally she feels the toll this takes on her. I can see how she is always just a bit unsure of how much she will be able to communicate with you each day. How badly she wants to open her eyes and speak on the days that she can't. Whether or not she remembers it, it has to be tiring for her.

Both the caregivers and the person with dementia need to find ways to ride the dementia roller coaster so it is as smooth as possible, enjoying the good days and making the best of the bad days. You can not read too much in to the bad days or the good days. I wish I could think that because Mom was doing better today that she will recover to where she was a month ago, but that is probably not going to happen. However, that does not mean I won't enjoy these times with her as much as I can.


Rev. Katie

1 comment:

  1. I experience this with my husband and especially with sundowning episodes at his stage. I have learned to roll with them.