Four Acceptances in My Journey with Ginny

The focus of this blog entry is not really about Ginny, but about the control process that we all face multiple times every day, sometimes slowly and sometimes so rapidly that it makes our heads spin as we try to weigh facts and alternatives to make decisions. And at some point in this process, after we make a decision, there’s one little step left afterward—not so much based on the logic of the decision but on our emotional reaction to it: an acceptance of the decision.

We may think it was logically the best thing to do in trying our best to make the decision we did in a particular situation, but how do we feel about it? Is it upsetting, leaving lingering doubts, second-guessing our actions, replaying the whole process again and again coming to different conclusions, and on and on? The result is that you might think perhaps, maybe, possibly that what you decided was best, but … it sure doesn’t feel good. Not the best situation to be in.

I don’t know if this story of my challenges of decision-making and acceptance during the Alzheimer’s journey with my wife of 60 years will be of any aid to you in trying to accept your decision-making, but maybe it will give some comfort in at least knowing you’re not the only one struggling with big decisions you face. We’ve all got ‘em at some point in our lives, and they're not easy to resolve.

In my journey, the first was accepting the fact that the medical profession would not and could not help Ginny. After I figured out that it might be dementia of the Alzheimer’s type, I started researching online as much as I could about the disease, what could have caused hers, and what might be done about it. As her symptoms got worse, she no longer was eligible for any clinical trials that sounded promising because they generally only took those who were just suspected of having Alzheimer’s or were just beginning to show signs of it. So, she was beyond help there.

My search did find research showing potential help in using off-label prescriptions of several drugs for her stage of dementia (off-label means prescribed for other conditions than what they were initially approved). Since about 30% of all drugs are prescribed off-label, I thought it should be no big deal to try some of these with Ginny.

I tried early on to get her doctors, and others who listed dementia as one of their specialties, as well as clinics at the University of Washington and other institutions and hospitals, to try using the drugs I recommended, but no one would: the reply was “We don’t do that,” although I’m certain they had personally prescribed drugs off-label as a standard course of treatment for many conditions … or were they afraid of bad side effects, such as dying? Well, she was destined to die from this disease anyway, so why not try? In addition, at that time, almost all major pharma-sponsored research in the US was directed at reducing amyloid plaques—which is the result of something causing the clumping; it’s not the cause of the disease. So they were totally misguided in their efforts (focused on looking for the billion-dollar solve-it-all pill). I couldn’t save her through medicine; that was clear.

What was left was to turn my attention to just taking care of her on her journey, that’s what I could at least control, I figured. So, I then searched for information about all aspects of care—a big area, but at least it was something I could make effective, satisfying decisions about. Of course, new dimensions of care sprang up anew in our household, almost daily—like weeds in my garden after a day’s rain. Eventually, a new decision had to be made.

This second acceptance was the eventual realization that I could not continue to take care of her at home. The list of reasons was endless, ranging from having to track her down in the neighborhood because she had escaped through my counter-measure barriers, to growing incontinence, to completely reorganizing everything in the kitchen and bedrooms so I could never find anything, to increasing speech difficulties, to say nothing of the steep decline in cognitive thought, etc. I was getting more and more physically worn out and unable to sleep at night worrying about what the next day might bring.

I kept reminding myself that I knew where this was heading and that she would eventually need to be placed in a memory care facility, but I always thought: not yet. I remember well the moment when I finally accepted that my attempts to control her and her environment were not enough.

I had shortly before showered her and was trying to get her socks and shoes on as she sat on the edge of her bed giggling and kicking her feet about, after I had just changed her disposable pull-ups—again—and managed to get her pants back on. My back hurt from all the bending over I continually had to do, as I tried to control her flying feet. I looked up as she sang a little melody of nonsense, and I thought: I’m killing myself physically and emotionally, and I’m no good to her if I’m dead; so it’s time, now. I then went looking for alternative residences and in three days decided on HomePlace, a four-minute drive from home and where she’s been for 5 ½ years.

Third was my acceptance to carry out the pledge we made to each other shortly after being married that if something happened to either of us that resulted in death or a drastic reduction in our capacity to have a meaningful life, which would result in death eventually, then the other was to seek out a new life without them. It took me years to finally accept this one because it was more or less a finalization of the hopelessness of the situation.

The moment I realized that I was going to have to accept our agreement was just before my 80th birthday. I was casually thinking about my new decade and visualizing in my mind where it placed me on an age scale from 0-100. I located my new spot at 80 and then thought, OK, next is ... 90! OMG! That’s just ten years from now—the blink of an eye. And visions of all the 90-plus-year-old residents of HomePlace who I had known and watched pass away over the past 5 ½ years that I had gone every day to hand-feed Ginny a meal, slowly crept by in my mind.

Not that I expected to be in their condition in ten years—we never do—but regardless, a few things in this aging body are assuredly not going to work as well as now. I knew I’d better think hard about that promise. And I also knew Ginny would have kicked my butt if I hadn’t. So, I did. I accepted the decision to get on with my life … and chose to return to the cruising life on yet another sailboat in the Caribbean.

Fourth was my acceptance that Ginny was no longer present in that body: all indicators of who Ginny was were just gone. This was very difficult to accept, but I had—again—known that it would eventually come to pass. I had been watching her—her personality, the essence of who she was—gradually, relentlessly disappear over the past 15 years. Instead, another person appeared, not the complete Ginny but a partial Ginny. But that’s what I had left, so I cherished the new person. However, I always remembered it wasn’t to last, that mirage. And it didn’t.

It was just a few days after the Fourth of July this year. I looked at her during the lunch-time feeding, her in her wheelchair and me scooted up close, a spoonful of food ready for her to open her mouth, and I thought: You know, I haven’t seen an ounce of Ginny’s facial expressions or arm gestures or her looking at the pictures of animals on the wall that she always would point to and mumble something… I haven’t seen any of that for days. And I had to conclude, and accept, the fact that she had already slipped away, almost unnoticed, and was no longer there.

What is now left is a body autonomically fighting to both sleep and eat, and drink, at the same time—a hopeless situation because sleep is going to win, guaranteed. So, now what am I to do? Well, my role has changed to watching her face carefully to ensure she isn’t in pain, fearful, or extremely in discomfort, physically or mentally. If the eating/drinking reflexes are still functioning, I—when I’m here, and the staff—when I’m gone, will continue to feed her to help that part of her body keep going. And when sleep wins, the whole body can finally be at peace and rest.

So, what’s the point of this story, anyway? First, I guess it’s that—as I’ve always said—you can’t control everything you would like to: in my case, the medical profession, how much home care is possible, or when a person’s personality changes. However, you can control making major changes in the direction you take as your next steps in life. It’s never too late for that, even though it is always too late for some loved ones, like Ginny. The disease settled that. But I made choices to learn about the disease, to try to get help, to take on the task of home caregiving, and to carry it on at her care facility.

Those are choices I made and am glad I did. Of course, there are some choices you make in life that you just as soon hadn’t been confronted with having to make, such as taking a journey with Ginny on her road to Alzheimer’s, but they make you a wiser person for it if you believe the glass is always half-full, not half-empty, as I do, and learn from them.

Second, a key to being able to achieve some control over a decision-making process is to prepare yourself for it by imagining as many possible factors that might be involved and how they could affect the outcome—going over and over these scenarios until they are comfortable in your mind. Then, when the crunch comes for making the decision, it’s not so new nor upsetting. In other words, you’ve practiced, just like an athlete or musician would. They practice going over many moves and strategies so their performance is acceptable. It’s no different here. Practice your alternative moves, settle on what seems like a good idea, and execute your plan; if it doesn’t work, you’ve got alternatives you’ve also examined, and practiced.

Third, practice is important in another way too, besides figuring out the logic of what to do. It also makes you confront the emotions accompanying the control and decision-making situation and ease the burden of handling them. For me, believe me, each of the four acceptances I made carried a heavy load of emotion—some for years and others culminating in a short time.

But the secret to them all was that I never tried to shove those emotions away, to postpone confronting them. I let them surface—I cried or felt sorry for myself, or whatever—and this got me used to them and eventually worn out on them, so to speak. Practicing enabled me to handle them when the crunch finally came, and I had to accept what was decided or inevitable. And I still allowed myself a little momentary deep sadness or a few tears when the time came, but that was all and easily stopped since I had practiced controlling it.

The fourth, and very crucial element of control strategy and acceptance, is about how you handle the passing of time in these situations. When you are trying to accept something that has happened, and very often has many emotional attachments to it, do you go back over all the stuff that was involved, again and again, wishing you or someone had done things differently? That’s certainly a common urge to all of us, to be sure. But it’s a trap you don’t want to fall into. It’s a trap because you can’t find a way to make it better, how you feel about it, or somehow change how it ended up.

Well, the reality is that nothing can be done to change it. You can’t change the past. It’s done, over with. So, what can you do? You have to simply let it go—everything: wishes, emotions, dreams of “what if,” the whole bag—because hanging onto it holds you back from making decisions about the only thing you can do: accept it, good or bad, and work on the present. The present is the only thing you have any chance of controlling. Accept what happened and focus on the Now since that is where hope lies. This is the biggest acceptance of all in making our way through life and needs to constantly be at the forefront of our awareness when we are confronted with all those big and little control points every day.

To end this little sharing, I hope that my example of what I experienced on my journey with Ginny provides you with some understanding of how control and acceptance fit in that journey and that it gives you some ideas for understanding how you can, or already do, go about making your decisions and acceptances.