Taking Care of the Caretaker

By Shirley Ross Loeb  | Caregiving

“Statistically, caretakers often die first.”

“What? That’s unbelievable.”

This startling news was from the psychiatrist in charge of my husband’s medication to treat his Alzheimer’s. I, his wife and caretaker, had to learn to take care of myself. I didn’t feel noble. I felt guilty and a failure. My journey is reflected in my stage play, “Progressive and Irreversible,” which was read last Sunday at Theatre 40 in Beverly Hills. It was overwhelmingly received. The artistic director asked the audience to raise their hands if they had been affected in a similar way. Between 1/3 and ½ of the hands went up. That’s how widespread this disease has become.

My husband was a super star in character and in attributes. Handsome, smart, kind, with twinkly eyes that almost closed when he smiled, he was a Harvard Law School graduate, magna cum laude, law review – the real pride of his European born parents who themselves never had an education. He had been president of his fraternity at UCLA, on the board of a Fortune 500 company, president of an Outward Bound group, chairman of a nonprofit radio network. He travelled to Asia and China for a client inspecting factories and improving the condition of workers. People flocked to him because of his leadership, his supportiveness, his great sense of humor. I was so proud to be his wife. We had a total of 5 children, two boys together and 2 girls and a boy from his first marriage.

Initially he went into a depression, and I thought his retirement created a loss of identity. I believed this was a passage and he would ultimately find activities where his abilities could be utilized.

I was excited to have him to myself and looked forward to our Act 3. We were going to travel, take it easy, have fun, indulge ourselves. We had planned a 6-week trip to celebrate our new freedom. The first week of the trip he was to lead a conference in Spain on corporate responsibility on behalf of a client. He loved this aspect of his work yet a few days before we were to leave he sheepishly confessed he was frightened to travel and wanted to cancel the trip. After a few excuses that didn’t really make sense, it became clear he really didn’t know why. This was inconsistent because he had traveled to distant places such as Patagonia and villages in India and China on his own without concern for his safety.

We saw a geriatrician who referred us to the psychiatrist mentioned above. The MRI revealed the Alzheimer’s diagnosis. This shocked everyone. Must be a mistake – not him – he was so smart, he was fit, he exercised, he ate well, he didn’t drink and there was no family history. We found out that the disease is more democratic. Anyone can get it. Witness Winston Churchill or Ronald Reagan – two exceptional men.

My belief system, through a combination of spirituality and doggedness, was that you can solve every problem. You never give up. Stay the course until it works out. I resolved to do it myself. I would be everything he needed. We would ignore the disease and press on with our life. Who needs travel anyway?

We all know the trajectory. At the beginning there are some days where it doesn’t seem so difficult. We curtailed our activities socially but still went out. We saw family. But the signs were creeping in. It was getting more difficult. He forgot our phone number which we’d had for over 30 years. Three years passed and the symptoms became more constant. He could no longer sleep, so he would wake me up numerous times a night. He would get angry over nothing. He wanted to lie on the sofa all day. He wanted my attention all the time. He was irritable, repetitive one minute and sweet the next and didn’t remember what happened. The upset didn’t leave me after he forgot about it.

I was exhausted. After he wandered out for a cup of coffee while I was in the bathroom and didn’t return for hours, I had to watch him every minute. My blood pressure went up. I had atrial fibrillation. I cried a lot out of stress and frustration and did not show it to the outside world. Was I just a wimp who couldn’t handle things? The stories I read about Alzheimer’s had to do with the noble, long suffering spouse or child or other relative who was so appreciative of any little thing. I wasn’t appreciative. I was becoming convinced that his disease would kill me.

When the doctor said that statistically caretakers often die first, I was shocked but relieved. I wasn’t so unusual after all. I searched for a way to cope where I could take care of both of us. His doctors suggested moving him into an assisted living place. He loved our home of 35 years. I couldn’t move him out in good conscience so I moved out of our home into a one-bedroom apartment. I arranged for 24 hour a day care with trained caretakers. Some people thought it was brave. Many thought I had abandoned him. I saw him every day but we lived apart. Would staying with him and dying first have made me a better person?

I think it’s time to realize that there are problems for which there are no good solutions. I want to honor the caretakers who give it all they’ve got and decide they have to take action to save themselves, even if it disappoints them in their own eyes.