And so, I begin to wrap up these blog posts. The next step is to convert it into a book which was my goal in the first place.
The nice thing about starting with a blog, or a column in my antiquated parlance, is to discern what readers might gain from my words. Some have responded and I value their thoughts. One respondent is a good friend who would rather I put a more positive spin on my stories and general observations.
Not many positive “spins” can be put on Alzheimer’s and its effect on both the afflicted and those who care for them. But I know what my friend is talking about. Other publications address the challenges of Alzheimer’s with attempts to remain upbeat. They sometimes succeed.
In some of my posts I have attempted to weave an upbeat perspective. One of the best being that love is a pervasive reality when other forms of cognition have weakened or disappeared.
No science supports that opinion, but I have seen it happen in my wife and others. It is something sensed intuitively or felt physically. A flicker of a smile. A spoken word that seems to come out of nowhere. A movement of the eyes. The tilt of her head. A strange look of contentment that settles over a body that was once a source of discomfort or great pain.
In my wife I sense something else which makes me especially happy. An aura of satisfaction surrounding her. As if the memories of her 80 years are compressed into a kernel of something properly completed. In that tiny space she has stored the richness of many experiences. Happy, sad, fulfilling, encouraging, worthwhile.
That expression of satisfaction in my wife of 58 years helps me believe I played a role. Far from perfect, but enough to nurture her fulfillment. I see much the same thing in others who live in the memory care facility.
But not always. It is hard to watch some people who appear to be full of anger. Or abject disgust. Even fear.
I do not know their backstories. Maybe they were similar to ours and the brain has just gone topsy-turvy. Credible evidence suggests that possibility.
So, who am I to judge? Prior to my wife’s current status there were occasions when she demonstrated paranoia, anger, beliefs in false narratives, misjudgments, and other aberrations.
But now, all those issues are gone. And that pleases me.
Our 50th wedding anniversary occurred in 2012. The family made it special. With help, my wife and I were able to take some memory-lane trips up to five years after the celebration. And for the most part, to continue a normal life.
My life as an Alzheimer’s caregiver is not unique. Nor has it been overly stressful when compared to similar stories. Interactions with other caregivers and my volunteer work with AARP have given me additional insights. I am a planner for the future and work at staying healthy, fit and mentally focused.
Do not get me wrong. I have made mistakes and still do. The situation I am in makes me depressed, with occasional bouts of despair. But they are just exaggerated sensations of what all of us experience in ordinary life. Peaks and valleys in our emotional affiliation with living.
I have been lucky. Some would prefer “blessed.”
And writing is my hobby. Which is why I offered my insights to those interested in them.
The reasons are to:
- help other husbands in my situation.
- be a tribute to my wife and our decades of life together.
- help me climb out of the emotional valleys I occasionally fall into.
All caregiving is challenging. But it is especially difficult when the afflicted person, once alive and maybe even vivacious, seems to mentally disappear. Little by little. Becoming a human being with no dynamic inner core.
Blogging is not a structured activity in which there is a continuous story line. Those who write blogs follow a theme. Individual submissions (posts) are not necessarily chapters, but rather expansions of, or elaborations on the theme.
As I wrote, I had continuity in mind. The elements of that continuity followed a logical thread that started with my own reflections as a caregiving husband.
After pursuing that direction, I examined and commented on caregiving challenges others faced. I created stories about them. They are stories different than mine.
But situations I knew by being around other caregivers. Or reading about their challenges. Scenarios were first introduced that presented unique situations.
Then I created fictitious couples who became characters in those stories. The stories did not have happy endings. There is nothing happy about a diagnosis of Alzheimer’s.
But, after telling the stories, I reflected on how outcomes might have been better.
The last posts were commentaries on how we can manage living during a caregiving challenge. For me to write anything that makes sense, I need to focus on something specific. Usually a word or phrase that has the potential to be meaningful. Even powerful.
That is what I did with each of the posts in my blog. Selected a word that applies to a theme I wished to pursue in the context of my own understandings, the experiences of others, and the effect caregiving has on those who provide it.
When I was young it seemed that reflection was often a waste of time. Do it this way. Or that way. Git-R-Done according to Larry the Cable Guy.
But when it comes to taking care of a wife with Alzheimer’s that philosophy is full of holes. It is not just an action or set of actions. It is a full-blown set of demeanors and an emergence of the inner core of who we are as men.
Men do not like to admit to having vulnerabilities, but we do. Lots of them. And it is how we can overcome those perceived deficiencies that make us the kinds of husbands we want to be.
To be there for the women we love most.
To take care of that wife as completely as possible in her time of great need. When she suffers from Alzheimer’s. And to survive the ordeal myself.
The next and last post of this blog offers a list of succinct recommendations that might help you negotiate your journey as the husband of a beloved wife who is afflicted with Alzheimer’s.
Continue to seek ways to take care of yourself.
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