What Am I Seeing?

Talking about the basics of providing care for elders in Alaska can be very dry and I apologize for those of you who are more interested in aspects of dementia and my experience with it.  But having a template for following the stages of necessary care was out there for me, but I didn't understand how to get through the process easily and so, I will return to details of what I have learned periodically.  But for now, I want to get back to what I am seeing in Mom - the actual subject of the blog.

First - a little review of Mom's condition since our visit to Hope Haven a few weeks ago:  Mom rallied and was herself for a very short while after she finished her round of medication.  I heard from those at FRA and her morning care giver, Pam, that she showed signs of her old self.  She was jocular, upbeat and participated.  When we visited Hope Haven, she was alert and cognizant of her surroundings.

Then those at FRA started commenting on her fatigue first, followed by Marilyn, her evening care giver.  I began checking in periodically because I wanted to be sure she was not showing signs of another UTI.  These can recur easily in elders, especially those with dementia who are not drinking sufficient water.  Those at FRA commented on a daily basis that she seemed exceptionally tired and often very confused.  Then Pam commented she was beginning to complain about her back hurting again and wondered if the UTI had returned.

Originally we thought we would be going out of town next week and that would be a good trial period for her staying at Hope Haven.  Those plans went by the wayside due to finances.  Since that coincided with Mom's symptoms, I started dragging my feet about going forward with moving into assisted living.  Mom has not been showing sufficient awareness of her surroundings outside of home for me to think she would make the adjustment easily.  If she were sick, exceptionally confused, or depressed, I felt certain her transition would be a failure and we would have to move her back into our apartment.  I worried even more about the layout of the facility at Hope Haven.  I worried about moving into a new home, only to move her back and the effect that would have on her.

And, as I confessed to Pastor Sandy at UCPC a few days ago, I worried that she would forget me if I were not there all time.  I know that this can't be a consideration for her care and well-being.  I know that, but I have looked out for her since 1999 as her dementia progressed.  To possibly be letting go of our relationship is another heart break for me.

I consulted with Suzy, Mom's current care coordinator at FRA, about my concerns with Hope Haven; I described the only other Assisted Living Home that I visited that I thought was acceptable, Let Us Care. As we talked, it became more firmly cemented in my that if she were to go to an assisted living home, one like Let Us Care would probably be an easier adjustment.  In that building, the room opened directly out into the common area so Mom could see all she needed, just like she does at home.  But Marion was not taking any new patients for personal reasons.

Then too, when I weighed in my options for assisted living against Mom's current state, moving to assisted living became less matter of fact.  So, in addition to requesting more hours for home care, I made another adjustment to her home care plan.  I asked that the morning PCA not arrive before 9:00 am daily and not take her to FRA much before 11:00.  My thinking was that it would reduce the number of hours she was at FRA and she would not tire as quickly.

Although a good plan for Mom, it had the sad result of Pam deciding to give up caring for Mom.  After a year of service to Mom, forming attachments and helping me make many decisions regarding her care, she could not adjust her schedule for clients she'd had even longer to meet Mom's needs.  We have had to move Marilyn into both the morning and evening position.  But, I have achieved one thing that I do feel is critical for Mom.  When I told Maria at FRA she would be arriving later in the day, she was enthusiastic about it being a good move for Mom, one that might make the difference for her.

Now, to the today's topic:  what am I seeing in Mom?  There are two possibilities.  Either or both could be affecting her current physical condition.  She may have a recurrence of a UTI.  There was no definitive signs of blood nor was it cloudy (indicating infection). Her urine was a dark amber color, which could be due to blood or simply the fact that it is highly concentrated since getting Mom to drink liquids is an ongoing challenge.   FRA is closed tomorrow, so Marilyn will take Mom to 1st Care for a follow up urinanalysis.  We will know if she has had a recurrence with certainty and can address it. In the meantime, I need to buy fresh cranberry capsules.  It is less difficult to get her to take a capsule than it is to have her drink enough liquid to ensure good urinary tract health.

So that covers one aspect of what could be affecting her.  The other could be a natural progression in aging.  I had my yearly physical yesterday and while there, I described Mom's behavior - the increased hours of sleep, her confusion and fatigue.  She told me it was very, very common as a symptom of aging.  There is nothing unusual about Mom's behavior in that regard.  I told her that I had never been with a member of my family who had passed due to natural causes.  She looked at me with a smile and said, "That is how they go. It is very pleasant really.  They sleep more, eat less, drink less.  At some point they don't want food or drink.  It is not at all hard."

I acknowledged that it was probably unpredictable, but could this stage last a long time.  She confirmed it could be.  One of her patients was in a nursing home whom they thought would pass a year ago, so there is no way to predict the length of time this stage can last.  But as it progresses, her ability, or even desire to go to FRA for socialization will decrease.

If my mom is only showing these signs due to illness and dehydration from a UTI, then she could rally again - enough for us to consider moving her into an assisted living home.  On the other hand, if they are signs of her decline into her final rest, then, as Dr. Tsigonis confirmed my unspoken thought, it may be too late for that.  We will use up every hour the State will allot as Marilyn increases the time she spends with Mom at home.  She will cease to go to FRA at some point and either she will remain at home until her final breath, or we will move her into a nursing home for what time she has left.

If she is not able to transition to assisted living, I prefer the former - to die at home - if it is possible.

Last night, I was reading my book of daily prayer for December 21st.  By happenstance, or not, the pastor providing the scripture reading and commentary wrote there were two moments in life that stood out as the most profound, where the import and mystery of life affected all those around.  They are the moment of birth and the moment of death.  I have been graced with experiencing the birth of my two children and the birth of one of my friend's son.  For a person who is life-preserving in the extreme, it is uncharacteristic to think of the point of death as a moment of grace, but I am willing to trust those who have experienced that and open my heart to witnessing that grace in the future.