Wife to Caregiver and Beyond

I met my husband when I was 12, we were married when we were 19, and have been married 61 years. We raised two children, did well financially, and had a good life. He was my rock and my best friend. We exercised, ate nutritious, and worked full time long after the age of retirement even though he had some memory loss and I had eye surgery.

Three years ago our lives changed dramatically. He had emergency surgery. Whether it was the trauma of the surgery and hospital stay, the effects of the anesthesia and medication, or something else, I will never know but his memory not only didn’t recover but it has deteriorated dramatically since then.

At that time, I took on the dominant role in our relationship, I learned to manage the finances and fix computer problems, did the driving, and basically made all the decisions while letting him think he was still in charge. That was the easy part.

What was more difficult was losing the person I loved for so many years and finding a way to accept that I am no longer a wife and partner, but a care provider –a role I never wanted.

I wasn’t a wife working with her husband to accomplish shared goals any longer, but a parent managing a child- adult. This took a major shift in my habits, perceptions, and beliefs.

A habit can be defined as an acquired mode of behavior that has become nearly or completely involuntary. After being married for over fifty years, my husband had many habits in place. We made decisions together, shared the household duties, he did the driving, I made the meals, and we enjoyed being together. Those habits had to change. I had to make the decisions, tell him how to do certain household chores, and even plan the day.

Even though I changed some habits, other habits had to change, as well. When he asked the same questions 15 and 20 times, my habit was to say “I just told you” or ask “How many times do I have to tell you? I also asked him what he thought the answer might be. Those responses only frustrated him.

So, I adopted new habits such as changing the subject, not telling him something was happening until the last minute, and being less than truthful. I get his attention before telling him something by turning off the television, eliminating distractions, standing in front of him, taking his hand or touching him.

I set him up for success as much as possible. If he is going to do a task, I set out the tools and I gave him limited choices such as “do you want to take a shower now or later?” He cannot be rationalized with, so I no longer challenge his erroneous thinking, but agree with him and work around it.

A belief is something that is accepted, considered to be true, or held as an opinion. Because my husband’s capabilities have changed, I had to examine my beliefs about marriage, about my role as a wife and, and about who I am.

For example: I was brought up to tell the truth; yet, I can no longer tell him the truth regarding most matters. So, I had to change that belief to one that says sometimes I have to be less than honest, it is in his best interest.

He should not be driving, so I tell him I want to practice my driving. I always believed that our marriage was a partnership, but that can no longer be. He doesn’t realize he is not the man he was, so I live a double standard – agreeing with his pipe dreams while knowing they won't come true.

A perception is a way of regarding, understanding, or interpreting something; a mental impression often thought of as true. He had been the head of the house, taken care of finances, fixed computer issues, and solved problems, my perception was that I couldn’t do these things.

But then I had to and was surprised to find I could. Based on how he responded in the past, my perception was that he was often angry, but he really wasn’t, he was just trying to remember and organize his thoughts. So, I had to examine my perceptions and discard ones that weren’t true.

Finally, I had to accept this new life – taking on all the responsibilities, managing his new behaviors, and losing the person I loved and counted on. The definition that said acceptance referred to acknowledging what is now true and then deciding what to do about it was helpful.

In terms of accepting this new behavior, I backed him up by making sure that his actions caused no problems. I accepted that his brain could handle only one piece of information at a time or one task at a time; so, I broke everything down into small steps. I had to accept that we could no longer have meaningful conversations and our special little jokes and secrets were no longer available to him. Sometimes there were moments of discussion but he quickly forgot.

So much of our old life was gone and so much was missing in the new one. I looked at my realistic options and chose ones that worked best trying not to dwell on what was. I also accepted what I could –this was not to be a forever role but one I could go on for a while longer.

Then COVID19 and shelter in place arrived and the situation changed. We couldn’t take little trips, have family over, or go shopping. He couldn’t understand the virus or its implications. We came to a point that he didn’t want me to go anywhere without him, he didn’t want anyone in the house but the two of us, and he didn’t want to go anywhere.

I became a prisoner in my own home in many ways; the stress became unmanageable. His memory confusion and fears grew and my changes were no longer enough.

I wanted to believe that my love and my willingness to change me would be enough to keep him home. But that was no longer true. It has now become a matter of taking care of myself or taking care of him. And I have had to make the heartbreaking decision to find another “home” for him.

What has been your experience?