Back in 2010 when it was discovered that Miss Cathy had first stage Dementia with an Alzheimer’s diagnosis, I asked Dr Alemayehu, her neurologist what to expect.
He said something to the effect that “each patient is different and their mental faculties diminish differently at varying rates, some deteriorate rapidly while others can remain relatedly stable for years ”. What I remember most clearly was that he sounded about as matter of fact and dry as if he were talking about actuarial tables.
He couldn’t and wouldn’t give me a timetable for progression of the disease (and rightly so). The control freak and planner in me would just have to sit tight.
As my mother used to say, “You can’t set your clock by crazy”.
It was going to be a game of ‘hurry up and wait” (for what who knew and how much care she’d need was a question mark). There’s not much one can do to prepare except avail oneself of books, support groups, websites, et al so that’s what I’ve been doing.
Then, that day not long ago, the clock chimed ‘Koo-coo” and the alarm bells in my head went off, time to put all that ‘book learnin’ and research’ to use.
The slide downward had begun again and it was obvious that the doctor was right; her disease was just on holiday….much like I was.
It’s not like I thought there was a “sell-by” date on Miss Cathy’s sanity but I couldn’t help but be surprised when the time came and things started to change.
I found that I’d started to live day to day much like the characters in the movie “Groundhog Day”, on a calendar that doesn’t change and if/when it does its only toward a future grounded in the past.
I’ve also realized that caregiving is a marathon and not a sprint.
Unlike a disease where you can have a nice hospital stay where friends and family can come visit to feel better about themselves (in-patient treatment for Alzheimer’s is few and far in between-and are usually the result of a fall or some other by-product of the disease) or get an operation for a cure (there isn’t one) or take a pill to put your illness in remission (it doesn’t exist).
So, it’s not about the ‘quick fix’ because there isn’t one, buying a helium “get well soon” balloon is well intended but not what’s needed to tend to your loved one’s well being.
It’s about living close (or in close proximity) and day to day care, teaching the same things over and over, aiding and guiding your loved one through simple tasks that they’ve performed thousands of times before but now are as foreign to them as you will one day become.
It’s also about being available 24/7 for comforting and empathizing, explaining the same questions and correcting the same mistakes again and again, day after day, after day.
So, Miss Cathy and I are joined, hand in hand, walking through the valley of the shadow of decline.
For her, the loved one, the one with Alzheimer’s, her “F” word may be “Forgetting” and, for me, the caregiver, the one that has chosen this journey my “F” word may be “Frustrating”.
But, at the end of a long day, when your loved one is tucked away, and there is peace and quiet in the home, one might just think of the other “F” word……“Faith”…….faith in the knowledge that tomorrow is a new day, and with your loved one, a new chance wipe the slate clean and to start again.
Postscript: Since this posting Miss Cathy has undergone an MRI (which was non conclusive) and is scheduled or an MRA and a Diabetic Retinopathy while her ‘team’ continues to find an answer for her sudden loss of vision.