Editor’s note: After a few years’ absence, Sheryl Theessen returns to The Daily Courier to write about life with a husband who has dementia.
Friends and family wanted to know how life was going for us, but telephone conversations about my husband’s condition and how things were around the house had become impossible.
Chuck always stood a few feet away every time I was on the phone.
No matter where he might have been in the house, when I was on the phone he was right there, usually around the corner and out of sight but well within hearing range, so there was no way to let people know anything about our lives, his struggles and his victories, or any of the other peculiar details of our daily lives.
I decided to post about our situation online instead.
And I have since discovered that this eavesdropping behaviour is not uncommon; a number of women in my support group have the same problem — a husband who lurks and listens when they are on the phone.
My going online was a way to keep friends and family informed without worrying about my eavesdropping spouse overhearing what he may not want to hear.
These online posts ran for two years, November 2013 to November 2015.
Nov. 4, 2013
There has been a change. There is never a time in this disease when there is stability. Along with the obvious gaffes and mental lapses that are easily observed, there can also be a series of subtle shifts that may be easy to miss until they morph into something that becomes recognizable as a change.
It is like taking sand away from a sand castle one grain at a time until the shape of the castle — voila — changes into another shape.
Something like that has happened here. There is something different in my husband.
For one, there is a mellowness that has never before appeared in the course of this disease. I am pondering if this has anything to do with some level of acceptance on Chuck’s part.
He has made numerous comments lately about not living much longer. But for someone with Alzheimer’s disease what does “much longer” mean?
Is this comment one that is coming from the perspective of what he will be capable of cognitively?
I am trusting that this is what he is attempting to tell me.
Or perhaps this new mellowness in our home, which easily may only be temporary, be the result of a shift in the sand castle to a new form, another step deeper into the pathology of this disease?
Anyway, there is an ease in our relationship that has not been present for some years now.
A blessing found in the face of adversity.
Nov. 6, 2013
Living with Alzheimer’s in the house is like living with someone who has multiple personalities. In our case, I live with three men: the old and familiar Chuck, the Chuck in transition, and the future Chuck.
By far, the transitioning Chuck is the most challenging to have as a partner. He is a complex, changeable being. Trying to live life, for this Chuck, means contending with a constantly shifting landscape that, by necessity, brings a never-ending vigilance and suspiciousness to every second of every minute.
This is the predominant personality I keep company with these days.
The future Chuck I have had numerous encounters with. The old and familiar Chuck still makes visits and brings us joy and wonder and a feeling of gratefulness that can hardly be expressed with words, like this past Thanksgiving when, at a small dinner party, my husband was his old self, witty and aware, for the entire evening.
Now it is the transitioning Chuck I spend the majority of my time with. It makes for a complicated relationship and a complicated life.
Because that Thanksgiving dinner party had been such a successful evening for my husband, I spent the next months in a Christmas whirlwind, imagining an unforgettable, magical time spent under the spell of the holidays. Precious time with family, perhaps the last truly good Christmas we could manufacture in light of Papa’s deteriorating faculties.
An overly ambitious plan that mostly failed, the old Papa only came around for limited spells, certainly not for an unforgettable evening around the Christmas tree or the dining table.
That past Thanksgiving ended up being the last time any of us were treated to an entire evening of his being present.
Sheryl Theessen is an Okanagan writer, mother and wife to someone living with Alzheimer’s disease. Excerpts from her caregiver’s diary will appear regularly. Email: email@example.com.