Aging Versus Dementia

It came to me that some of what I see is simply aging and not dementia.  Sometimes it is hard to make the distinction because my focus is the health of Mom's mental acuity.  Sometimes what I am seeing is the effect of illness, such as her bout with UTI.  Certainly illness is compounded by her mental state because she no longer monitors her own health, rarely taking action to provide nourishment for herself most of the time.  So dementia influences the level of concern care givers have for their charges regarding illness and susceptibility to dehydration, UTI, and injury.  But, it is not the only aspect that is affecting the elder.

My mother is wearing out.  She started out perky this week.  Her morning care giver and those at FRA (Fairbanks Resource Agency) commented that she was like her old self.  She was jocular, social, and integrated into the activities of the Adult Center.  Yesterday I checked in with the assisted living home care provider who is considering Mom, but has deferred taking another resident for awhile.  I told her we were in a good period, so we were okay with continuing to wait.  Yet, even as I was saying this, I found out later that she'd been very confused and listless all day.  She would not eat more than her sandwich; she wouldn't participate in activities; she wouldn't drink any of the special drinks we send with her; she could barely walk without support.  She put her coat on at 2 PM (14:00) and started saying "That lady will be here to get me soon."

Pam, her morning caregiver, and I thought it could be the change in routine was a contributor.  Pam had an appointment with her daughter, so Marilyn, her afternoon care giver, arrived to ready her for FRA.  Pam told me later that she had a few calls from Marilyn asking for advice as it was not going well with Mom.  These symptoms are most likely related to the dementia.  Anytime her routine is changed it creates drag on the pendulum swing as I mentioned in my previous post.  We thought since she was used to seeing Marilyn when she is preparing for bed rather than preparing for the day, that she was confused as to what she should be doing.  In the overriding dark of Fairbanks as it nears solstice, it is hard for anyone to know the time.  For Mom, time has lost all relevance.  Routine is her anchor as to what is next.  And when Pam arrived this morning, she did get into her morning routine quickly and was ready to leave as expected.  So, perhaps this explains the confusion of yesterday - or perhaps not.

There are physical aspects that are also influencing her demeanor and response to living.  She usually supports herself while standing in her house, often using a dining chair back to lean upon.  She will brace herself with walls, etc.  She can move without these supports, but has a strong preference for it or holding on to one of us when walking.  She sleeps soon after getting home in the evening.  She is usually abed by 6:30 and does not rise until 9:00 or 10:00 the next day.  She walks more hunched and her steps are slow.  Her face looks worn and although she has shown signs of sun damage and smoking for many years, the wrinkles are deeper, the face more pale.

She is wearing down.

The stretches of good times are decreasing and the frequency of low-energy times are on the increase.  I called Access Alaska, our care provider agency, and we arranged to meet for a new assessment next week.  We will do that after Mom sees Dr. Tsigonis (a quarterly event now).  I need a letter from Dr. Tsigonis documenting the changes in Mom which contribute to the need for more care hours.  I want to be able to let Mom be home one day a week, preferably Wednesday.  I also need support for when she is ill.  She can not be left alone and we can not always be available to stay at home.  Our work schedules can require us to be on site or she can take ill when we are out of town.

So that is the practical side of it all.  The emotional side is I seem to have shifted into a state of waiting rather than day-to-day living.  I am waiting to see which comes first, her need to be in a long-term care facility or her passing.  Up until recently, I was assuming it would be the former of those two.  Now I am not so sure.  My mind and heart have shifted into a new awareness of her condition and it is not based in her dementia.

My heart is breaking.