Dementia (3 of 4)
We used to call it senility, or senile dementia. It isn’t a new disease, but the incidence of dementia has gone up as our population gets older, and as other diseases that contribute to dementia have also risen—heart disease, diabetes, and other things, like smoking. Nearly half of the seniors helped by caregivers have dementia. In 2021, there were 11 million Americans giving unpaid care to 6 million people with dementia. That could double by 2050. The Alzheimer’s Association estimated that caregivers provided 15 billion hours’ worth of aid in 2020, and that 10 billion of those hours were given by unpaid family members. Most caregivers are women taking care of elderly parents. A minority of caregivers are the husbands or wives of a spouse who has dementia.
The Alzheimer’s Association has done an amazing job of spreading awareness of Alzheimer’s disease. But in addition, the Association website lists eleven other kinds of dementia. Sometimes we refer to any dementia as Alzheimer’s disease, because it’s the most common type and it’s universally recognized. Alzheimer’s disease is degenerative, and always fatal unless some other illness like heart disease acts first. No one recovers. Unlike diseases where recovery can happen, long-term care for a person with Alzheimer’s has only one ending.
Living with a person who has Alzheimer’s is hard and caring for them is harder. One couple I know had a very poor relationship when he developed dementia, but she cared for him anyway, out of a steadfast love and a strong sense of morality. Caregivers tend to say, “It’s what anyone would do.” Not everyone would. Caregivers I know have had friends and even family members drop them because they couldn’t handle the behavior of a person with dementia.
Once I became Diane’s caregiver, our relationship changed. We never stopped loving each other, but how we felt could vary from day to day. I’ve heard caregivers say that the worst feeling is having one who’s known you for a lifetime suddenly not know who you are. Some days Diane didn’t recognize me. One day I remember she seemed uncomfortable when I was in the living room, and when I left to go in the kitchen, she said to our daughter Lauren, “I’m glad he’s gone. When is Ron coming back?” When I came back into the room, Diane seemed to know me, and greeted me as if I’d just returned from a trip.
I got tired of doing every little thing for her, including basic hygiene. But I had started helping her with that when she developed colitis years earlier. It was a challenge then. Taking over more of her care wasn’t new; it just meant doing more. Year by year, I took on more of it, and she accepted it as normal. I still loved her, but my feelings changed as she became less of a romantic partner and more of a dependent. I got fed up at times, and so did she. Sometimes she didn’t know who I was, but she did seem to know that I was always there. There were many challenges like that, and when I ran out of ideas and energy. I joined a support group for Alzheimer’s spouses that met weekly.
By 2017, I’d spent more than five years caring for her full time. Simon was an old friend who’d spent several years as a caregiver for the Bancroft home, and he agreed to stay with us and look after her during the day. That gave me time to take care of ordinary activities like shopping and doctor’s visits. That summer, Simon and Lauren watched Diane while I took respite for a week. I drove up to Vermont in my camper to see an old friend I knew since college. During that week I had a birthday, and back at home, Lauren, Simon, and Diane signed a card for me while I was gone. Diane signed the card in her shaky handwriting:
That was the last thing she ever wrote.
It was a difficult time for me emotionally, but I can’t remember how I felt then very clearly. While I cared for Diane, I went from one crisis to the next, doing what I had to do and not stopping to reflect on it—that could come later. I wrote what I could in my journal, but at that time I wasn’t consciously aware of everything, and couldn’t express all of it. It took time and a lot of different experiences to bring those emotions to the surface.
As fall passed, I knew Diane was getting sicker and I called the doctor more often. Around Thanksgiving, she got worse and didn’t recover. Illness overtook her. By January, her doctor said it was time for hospice to come in. I told Lauren, and we cried together. We knew the end was coming.