A is for Alzheimer's Caregivers

In the mist of all the other chaos of life these days, I know a few women who are caring for loved ones with Alzheimer’s Disease or other kinds of dementia. My mother had dementia and I was her principal caregiver. One of the gifts of such a profound experience is that I can pass along what I learned to others who are in the same rocky boat. It was hard and it was rich with discoveries and some hilarious stories I love to tell. So here are a few things I learned, just in case they are helpful.

The early stages of dementia are hard to recognize, so we’ll begin there. In any case, there are a few hints that apply for the caregiver no matter what stage the disease:

Hint #1: Reality checks are good.  For I while I wondered if my mother’s behavior was just odd or if it was me or if it was something serious, or all of the above. My mother knew her memory wasn’t working well, but she didn’t understand that she was unable to work the TV remote because it had become too complicated for her brain. She began running into things with the car. When she told me she had run into the recycling bin and done a lot of damage to the front of the car, it didn’t make sense until I realized (days later) that she meant the boxcar-sized recycling center in the grocery store parking lot.  So I learned to ask gently for more details when she was distressed, learned to ask friends who had been down the dementia care road about what was normal, and turned to the internet for information. The pamphlets from the Alzheimer’s Association were helpful, too.

Hint #2: It takes a village to care for the elders. No one can do dementia care alone, no matter how much we love someone, no matter how determined we are, no matter how guilty we feel when we ask for help, no matter what. It’s hard to ask for help with a parent or spouse, but it is necessary. Which brings me to…

Hint #3: No Shame, No Blame.  It’s odd how we attach shame to mental illness in this culture – I think it’s a leftover from the notion that a person who is ill in any way is possessed by evil spirits. But here’s the thing: shame serves no one. It’s hard to shake it off, it’s hard to ignore, and it is remarkably easy to give in to it. I had to remind myself that if my mother were dying of cancer, I would be calling on my community of friends for help for her and for myself.  It took me a while to get past the shame and my wish not to embarrass her. When her friends started calling to scold me for stealing my mother’s money, I finally had to tell the truth. It required some gentleness and it required not taking it all personally, so I would ask, “Have you noticed that my mom is forgetful more and more often?” or “Have you noticed that my mother’s having more difficulty driving?” or “How is my mother doing when she plays bridge?”  Sometimes her friends could understand; sometimes they could not. Which reminds me of …

Hint #4. It’s Not Personal – or rather, “Try Not to Take It Personally”  This is a hard one because we are dealing with someone we love and have known perhaps for our entire lives. Or someone we trusted enough to marry. When they accuse us of stealing money they put away somewhere and cannot find, when they are downright mean, when they start hitting and pinching us, it is hard to know that it isn’t personal. But it isn’t. Sometimes I had to pretend that my mother was not my mother at all. She became the mother of a friend who needed my help. Sometimes I pretended we lived in a village where the greatest honor was to tend to the elder who was becoming difficult in her dementia. Which brings me to…

Hint #5. Let Yourself Grieve.  This is a person who is disappearing before your eyes. I came to understand that I felt my mother was abandoning me even though she was still right in front of me. I came to realized that our complicated relationship was never going to be completely resolved. I came to understand that when I felt overwhelmed with sorrow and anger at the situation, I was having a normal response. I had to be as gentle with myself as I want to be with anyone else who is grieving. Not easy, but crucial.

Hint #6. Whatever It Takes.  Do what it takes to keep your loved one safe. And whatever it takes to keep yourself healthy. Both are essential. “Do what you can where you are with what you’ve got” is a great guide in difficult times. And we’ve each got only so much energy, so much time, so much emotional wherewithal. We do get to the end of our rope. We may tie a knot and hang on, but the rope will fray. When my mom made a vague reference to burning her breakfast, my alarm bells rang. We didn’t live together and she had made me swear since I was a teenager that we never would, but it was clear that I needed to check on her in person at least once a to be sure she was safe. I began dropping in at odd times, which meant driving across the city no matter how sick I was on any given day. Whatever it took. Then my health got even worse and that is when a doctor said to me…

Hint #7.  It’s a marathon, not a sprint. As a caregiver, I was responding to every crisis and they became far too frequent. On the advice of several medical professionals, I found a good assisted living facility and she went to live there. It took some adjusting on her part and mine. I kept visiting every day until that doc said, “You can’t keep going like this and if you die, she will have no one. Pace yourself. It’s a marathon, not a sprint.” So, if dementia care is some sort of race, what is the finish line?

Hint #8. Dementia is a terminal illness. This statement shocked me; I didn’t want to anticipate my own mother’s death. I certainly didn’t want to look forward to it. But I did look forward to the end of her suffering. She was ill for well over five years and eventually the end of her suffering became more and more important. Which not to say that we didn’t have great times. Because…

Hint #9. Dementia is Not The Person.  My mom was still “in there”. She was still herself, stubborn, smart, creative, funny, and observant. As she became more comfortable with her living situation, she became happier. A lot of that had to do with the friends who visited her on a regular basis – my friends, not hers. Her friends dropped away pretty quickly and I could understand why – she was a reminder that dementia can strike any of us at any time, but the older we are the more likely it gets. My friends, on the other hand, simply visited to enjoy her. Gracie took art supplies and they drew and colored together. When my mom no longer recognized her own watercolor paintings on the wall, Grace could remind her and sing her praises to the nurses as well.  When Pam brought my mom a funny little crooked pink aluminum Christmas tree at Halloween, no less, I was amazed at my mom’s reaction. She had forgotten her long-held animosity against metal trees, especially pastel ones, and giggled about her funny tree for weeks. In her last weeks, my mother regaled the nurses and other residents in the TV room about my romances, some of which she made up in her head. No matter, I didn’t take it personally and she certainly entertained the village.

Hint #10. Take Care of Yourself Too   It took at least two years for me to regain some of my old stamina and zest, which served to remind me of all the times friends and medical professionals urged me to take time off from dementia care, to exercise, to have some fun. They were right. My spiritual community was my sanctuary in many ways; may you have one, too, of any sort.

Most of all, I want to you know, dear intrepid caregiver, that you are not alone. You are intrepid especially when you think you aren’t. You are a blessing to the one you love.