There's Always Room for One More
Two weeks ago, we got a new roommate.
No, it wasn’t a recent college graduate moving home – although we have one of those. It’s my 93-year-old mom, who is suffering from mild-to-moderate Alzheimer’s disease. She was all set to move to an assisted living community up in Chico, but a COVID-19 outbreak a week before her move scared us.
My sister and I – her main caregivers for the past year-and-a-half – realized my mom needed family around. A half-hour visit twice a week would not help. She is still quite healthy and mostly lucid, except for that short-term memory and confusion thing. Since my sister – whom my mom lived with throughout the pandemic – was suffering major caregiver burnout, and has four grandchildren of her own, I realized it was my turn. My husband, an Italian who is used to taking care of elderly relatives in their home, looked at me and said, “Why doesn’t she just moved in with us?”
Yes, my head said. It was time. I could give back to her all the love and generosity she has given me my whole life. She’s been a widow for 57 years, and throughout that time, and an acclaimed educational career in Chico, her kids always came first. This was my chance to give back.
But it’s going to be a hard adjustment for me. I am coming out the other end of a major period of anxiety and panic, so much so that I had to leave two jobs and devote the past year to learning how to treat my fears and anxiety, and the importance of self-care.
I am scared how suddenly caring for an elderly person who needs a lot of care will affect my own health. And that makes me feel guilty and like an imperfect daughter.
But I want to point out two things: First off, I have a family that is more than willing to help out. And despite the fact that my son is moving out in July, he’ll only be in San Francisco. My daughter is in Petaluma. My brother is in Santa Rosa, and my cousin is just a few miles away in Walnut Creek. My husband is more patient than I am, and a joy to be around. (As long as he gets his downtime at night when he can watch shoot-em-ups.) But if I ask him if Mom and I can watch something less violent with him, he graciously agrees.
Most importantly, I hired a wonderful “care companion” for my mom for 24 hours a week, so I can freelance, run errands, take my health classes and take some time for myself for self-care.
But I’m still scared. And sad. I miss my mom.
According to Harvard Health, most experts say that if the affected person asks you what's wrong with them, you should be honest. Knowing that the problem is a disease [like addiction] not "insanity," is often a relief for the person affected. Telling someone who has not asked may be helpful, particularly if the person appears troubled about his or her condition. Generally, it's best for the physician to explain the diagnosis. New information doesn't always "stick," however, so don't be surprised if someone with Alzheimer's disease continues to ask what's wrong. In such cases, you can offer a reassuring but brief explanation.
You may also need to talk to family and friends. People with Alzheimer's disease often look quite healthy in the early stages of disease, and people outside the household may be unaware that anything is wrong. But it's important to tell other family members and friends about the diagnosis as soon as possible for two reasons. First, they need to know that any unusual behavior is caused by disease, not by "craziness" or "meanness," and that they'll need new ways of responding as the person's cognitive abilities decline. Second, you and any other caregivers need emotional support and practical help from others.
And many of us have to prepare ourselves. Today, 6.2 million Americans are afflicted with Alzheimer’s disease and about 30 million worldwide, according to the New York Times. That number is expected to double by 2050. That doesn’t even consider other forms of dementia, the umbrella disease in which Alzheimer’s is under.
Luckily, my mom is not mean. She is lovely. But her constant repetition of questions, and confusion about her whereabouts, are tiresome, and when I’m tired or stressed, it’s hard to be patient. I also get sad because I miss our talks and her companionship. Someone said (and I wish I remembered who or what) that watching a parent with Alzheimer’s is like watching them die a slow death.
But sometimes Mom and I still talk, and in the moment, she gives me the reassurance only a mom can. She may not remember it, but I do.
So, as I face this new chapter in my life, I remember what I have learned this year: I can be scared and sad, and an imperfect caregiver, AND I can also be glad we made the decision to make my mom’s last years full of laughter and love.