From shadowing to sundowning: saying a long goodbye to my spouse

I just needed to go to the bathroom. But even those few minutes of privacy were impossible. When I went into my closet, the bathroom or upstairs, my husband would get upset and call for me. I couldn’t be out of his sight.

As his mind descended into Alzheimer’s, in many ways I became his life raft, the one place he knew he was safe. But that also meant “shadowing,” where he would follow me everywhere, even to the bathroom. It was upsetting, disturbing and exhausting to never have a minute to myself.

Things got even worse at night as he started “sundowning.” To friends and family, at least earlier in the day, he seemed pretty okay. But as evening came, he became more and more agitated and confused.

I know it is difficult and heartbreaking for those who have cared for parents or grandparents who have Alzheimer’s. But it is different to lose your life partner and know you will never have him back again. You will never again have a conversation about current events or your children. You are alone, leading the life of a couple. Even with friends and family, you are alone. You will be alone for the rest of your life.

It has been a very long and devastating journey from first not realizing that something was wrong and blaming my husband for his mounting mistakes to finally accepting that something was indeed terribly wrong. Having spent most of my career in health care, I was terrified and panicked as I began to realize the truth. While my husband didn’t have any idea of what the future held, I did.

It is different to lose your life partner and know you will never have him back again. You will never again have a conversation about current events or your children. You are alone, leading the life of a couple.

One of the first signs of the disease, although I didn’t know it at the time, was sporadic movements of his legs and arms while he was sleeping. He remained sound asleep, but they startled me awake. Then I started noticing that bills weren’t getting paid. My once high-functioning husband was getting absent-minded. When the accountant called and asked why my husband hadn’t sent the tax information, I knew.

I told my husband he needed to see a neurologist. We went. He was diagnosed with Alzheimer’s.

For a while after the diagnosis, things seemed okay. He was relatively happy. He had retired, so there was no pressure. But as things progressed, he became more forgetful and could no longer perform simple tasks. The leg twitches in bed turned into full-on shaking that kept me up at night. He’d wake up several times and ask me who I was or if I was his wife.

Bob had been a well-known journalist with The Wall Street Journal. When he retired, he’d planned to write a book. He did ghost write one, but he started another book he was unable to finish. Eventually, he wasn’t able to read at all. His personality and his ability to have a conversation, to understand the news, to pay bills, were slowly leaving him.

When he couldn’t do something, and I tried to help him or correct him, he would get angry. They tell you it’s the disease, it’s not him. But it’s very difficult not to respond and get short-tempered, aggravated and stressed.

Eventually, I had to help him shower and dress. I couldn’t leave him alone. For a while, he went to a support group for men with Alzheimer’s, and I hired people to take him out. But then he wouldn’t go with strangers. Soon he’d only go out with me. I couldn’t deal with the anger, arguments, stress, sleepless nights, being shadowed. I was told by Alzheimer’s specialists that it was time for him to go into a facility.

We had been married for 50 years and, aside from business travels, we had slept together in the same bed for all that time. That last night I lay by his side knowing that this would be the last time.

The facility was originally okay but then, somehow, he broke his foot and had to have surgery, which led to two different facilities. By that time, he couldn’t walk and the facilities were grim and depressing. The food was terrible. I couldn’t leave him there. So, I built a room downstairs, with windows, a CD player and television. I make all his meals and he’s eating just like before he was in the facilities. I have round-the-clock caregivers who have become like family.

Still, when I’m with him, I’m depressed and heartbroken to see what has become of a wonderful, funny, talented and intelligent man. And when I’m not with him, I feel guilty. The heartbreak never leaves, and you can’t get away from it. It is a living nightmare for us both.

Phyllis Greenberger

Founder and first CEO of the Society for Women’s Health Research, Phyllis played a critical role in pushing the FDA and NIH to require more women and minorities in clinical trials. For the last two years, she has been working with HealthyWomen as senior vice president for policy, advocacy and science.