Everyday It's Halloween

You stop and wonder what the mind clings to during the days of "sundowning". My mother's care team has begun using that term this past week as her days begin to alternate between lucid and clouded thinking. I'm deeply frustrated because her doctor is in Europe and all these words are being thrown around that don't describe my mother by people who don't know her. Unless, of course, there is some kind of unfair coincidence with the timing of her failing.

We all know, as her primary care doctor knows, that Mom gets very confused whenever she has a bacterial infection. Right now she has C-DIF, a highly contagious intestinal infection. Interestingly, her best friend from "the home" (that's what she calls it!) is in there with the same bacterial infection. But Mom's thinking will clear again, I am certain. In the meantime I'm worried that the hospital staff is getting carried away with ideas of "dementia" and if "the home" sees that diagnosis written anywhere they will ask her to move out. Another move to another unfamiliar place will be the end of Mom. And she will leave this world sad and confused. She feels safe where she is now and it is our hope that she can remain there as long as she lives.  A misdiagnosis at this point would be a tragedy.

Yesterday I went to her apartment to talk with her caregivers and I had to smile because as I reached in the cupboard for a glass for water what I found were piles of zip lock bags, each filled with four different bite-sized candy bars. I know it's close to Halloween and this could be explained as such, but I also know my Mom's behaviors. She gives out these goody bags to any and all caregivers who come to help her night and day. It started as a candy dish on her coffee table and then she began bagging it up just as I remember she has done every year for Halloween. She's been doing this for months now. Since she no longer works or shops or cooks or sews, these little bags are now her only gesture of care taking for others. These little bags are her connection to the life she remembers where she was needed and in charge. These little bags are her currency for real life exchange.

So if you are a pray-er, please say a prayer for my Mom, that she be seen as an individual and not blanketed into the geriatric bed of sundowning. I know her time gets closer everyday (her old body is giving out), but I also know it's not today or tomorrow or even next month, and my prayer is that she remains seen as an individual human being, that she is treated with the dignity of autonomy.  Yes her body is failing but I truly don't think her mind is.  My immediate prayer for her is that she be allowed to return home to her little apartment where she was just becoming happy again. That she feels her community.  That she feels peace.

Comments

[jaykaym]

My grandmother, who was blind, would get very confused whenever she had a change in her surroundings. When she was at home she was perfectly capable of managing things, including her finances, but when she was visiting us she would become totally confused as to where she was, who we were, and what was going on and we had to keep reminding her. When she returned to her home, she was fine. We finally realized that it was better that we visit her than to have her visit us. I'm certain part of it was the blindness, but I think another part was just the shock to her body and soul of change in her routine and her surroundings.

Before they can do a dementia diagnosis there are specific tests that they do as to her awareness of what is going on and her reactions to it. If it comes to that don't let them do this until she has returned to her apartment and has become acclimated again.

Now, my mother on the other hand, had dementia but I could never get people to believe me because she was a very gracious woman who could make gentle conversation with anyone. And she had all the hospital staff convinced that she was the model patient. When she had her foot amputated the physical therapist was convinced that she would eventually learn cope with it and return to her home. I had to tell the therapist that my mother did not even realize that she didn't have a foot.

[emily]

I haven't read your blog in a long while but my thoughts are with your mother!!!! My mom had C-DIF this year, and it was very difficult for her even thought she is much younger and healthier than your mom.

I think we all feel a bit out of joint when we are away from home, and I can only imagine how that is compounded when you are away due to illness. I hope your mom is able to return very soon and that the familiarity will help her feel calm and regulated again.

XOXO
Emily