Stones That Speak

The first thing I want to convey is that I whispered more than one quiet and painful goodbye to my first wife long before the day she died. To anyone who has not lost a loved one to Alzheimer’s, that may sound distant or cruel. But ask any man or woman who has watched the disease claim their partner similarly, and they will nod their assent. Because before Alzheimer’s finally claims your loved one, it robs them of their past identity. It squeezes out the beautiful little quirks and idiosyncrasies that defined them. It takes away their ability to speak. To reason. To remember.

To return love.

And so the date on the box which holds their cremains, or on a gravesite tombstone that commemorates their death doesn’t ever coincide with other ways—other dates—that they died while still in your midst. How they wasted away before your very eyes.

Again, to those who have never lost their spouse to Alzheimer’s, these words can sound hard, and hard to comprehend. But it’s the truth, or at least my truth. And it’s truth as I listened to it expressed by other survivors in my support group where they sobbed while describing how their wife or husband had retreated—through no fault of their own—into a place of no return

Early signs

I read a lot about couples affected by Alzheimer’s who stopped being invited to social events. Everyone may have thought we were having a wonderful life, even though they didn’t know what was really going on, and now I needed to cope with not being understood or accepted anymore. Fortunately, I worked on not letting that happen to us.

Dementia means having a loss of memory of things that happened most recently. It’s a chemical imbalance, and research is still trying to figure out causes and cures. It is caused primarily by Alzheimer’s disease, the most prevalent cause, but can also be caused by strokes (vascular) or Parkinson’s. What’s not known is the root cause of Alzheimer’s—what Phyllis had.

Signs leading to her demise actually began years before her death. Making decisions was tough. A simple menu selection at a restaurant was very confusing. She would ask me “What are you going to have?” and her typical response when I told her was, “ I’ll have the same thing.” This decision process went on a long time during the occasions we went out. I learned to cope with this, so I would always order something she liked; and after that I told the waitress, quietly, what I’d like. One of many little strategies I relied on so I could cope, especially when we would go out with family or friends.

Another early sign of Alzheimer’s is the inability to find the right noun to name something. Another is to regularly crave sweet things. While she could still drive, Phyllis would buy lots of Werther’s candies and frozen ice cream cones. Most of these were hidden from me until I discovered many wrappers discarded daily under the pillow. People with Alzheimer’s lose their ability to discern what is right and what is wrong. Ice cream tastes good, and there is no way to process the fact that too much of it is not healthy. After a while, of course, I adjusted to that with rationing and talking about better eating habits. But the guardrails of using good judgment get all skewed.

Others told me later that she would relate the same story over and over, or would call my kids repeatedly with similar complaints or issues.

Like many other caregivers whose spouses had dementia, the early years are the hardest. Confrontation, arguments, correcting, challenging—all things that I should not have been done—I did them—until that day in 2012—a day of accepting the obvious.

Finally, a diagnosis

The neurologist told me, after a lengthy four-hour exam, what was really something many of us had long suspected—Phyllis suffered from dementia caused by Alzheimer’s.

After the diagnosis of Alzheimer’s in 2012, it was somewhat of a relief to know that I could tell my kids and friends about Phyllis. No one was surprised. They could probably tell I was walking a little taller knowing that everyone knew, yet my heart was sinking as I contemplated the future.

Friends said I did a great job as caregiver. I don’t know about that, really! Even though I knew in my mind what was happening, I had a hard time coping with what it meant on a day-to-day basis.

I did become more patient. I did understand the many repetitions. I did read everything I could about Alzheimer’s. But, what I didn’t do was talk about it much with others.

We lived by all outward appearances a rather normal social life. Phyllis took care of herself—hair, make-up, etc. were all well done. We went out regularly—for dinner, out with friends, to church and even went shopping together—something I really hated, i.e., shopping. (Phyllis had done this for us all our married life!) But her friends stopped calling her after a while, and she lost contact with many. This hurt! But we did OK.

At home was another thing. She would often ask, “Can we go out for dinner,” even though we had just eaten. “Can we do this . . . or . ., or that . . .” were oft-repeated questions that get on your nerves. Fortunately - - - I never blew up in our time together. I was proud of that, although the temptation was always there!

When I see stones, I remember the ones that Phyllis would collect from all the places we’ve visited, and they still speak to me of our wonderful life together. People sometimes wonder whether I might have lived my life differently, but when you “trust in the Lord with all your heart...and lean not on your own understanding,” I can honestly answer “No.”