I grew up singing John Prines’ song “Dear Abby,” a humorous look at the kinds of people who write to advice columnists. Be satisfied with who you are and what you have, the song implies. Of course, Calvin of Calvin and Hobbes fame, takes a different perspective. His suggestion: all the whiny people of the world should just suck it up and stop whining.
If I were writing an advice column about Alzheimer’s, I’d tell you to learn from my mistakes. I’ve made plenty in taking care of Mom, and I figure I’ll be making a lot more in the future. Here’s some advice I gleaned these past two weeks living with Mom while my dad was away. I offer it in the hopes it will help you if you are going through something similar.
Each individual with Alzheimer’s is unique, so there’s no telling if what works for my mom will work for you. In fact, sometimes, what works one day with Mom won’t work the next. Bottom line, be creative. This is a by-the-seat-of-your-pants operation.
Probe gently. What kind of mood is Mom in today? Is she hostile and guarded about her independence? Will she accept my help? Ask specific questions to figure it out. Not, “Would you like my help?” but “Can I adjust the water temperature in the shower for you?” If you are rebuffed, keep trying. She needs you; she just don’t realize it.
Use improv. If Mom is talking about how someone had something that they had to deliver but it went astray and what should she do and does she need money and is this the letter (holding up her nightgown) that she needs, counter with your own illogical answer. “Oh, yes, she found the right monkeys to give it to. They were very happy to drink tea and visit the queen.” Mom eventually realizes you’re joking with her, and she’ll start to laugh. My husband Jeff is a pro at this.
Stay calm. My mood affects everyone around me, sometimes inadvertently. If I’m a little tired or even taciturn, Mom will pick up on that. And if something strange happens, like she starts coating her arms and chest with deodorant or brushes toothpaste into her hair, if you yell at her to stop, she may startle or become defensive. (“I know what I’m doing. Don’t tell me what I can do!”) Instead, swallow your incredulity and hand her a towel or run like rabbits to the bathroom.
Let them talk. I don’t have to correct Mom’s version of reality. I don’t have to respond to every half-baked statement. If Mom says her food is tasteless or she’s worried that she hasn’t seen her parents in a long time, or she has things to do and must get home, say nothing. If Mom introduces me as her sister or cousin, I let it slide. At least I know she still values me as a close relative.
When in doubt, sing. We have a song for brushing teeth and washing hair, a song for putting on Mom’s medicinal patch, walking songs, eating songs, sleeping songs, songs for good moods, silly songs, and old favorites. Tap into their early memories and sing away. It doesn’t matter if you can’t carry a tune. Definitely learn the words to “I’ve got a lovely bunch of coconuts.”
Always know where they are. It happens gradually, their inability to function, their loss of time, of reality. You’ll have to decide for yourself when you can no longer trust them to be on their own. At that point, make sure someone is with them at all times. Even if it is sitting amiably and quietly in the living room listening to music, they should not be alone. Don’t let them out of your sight: they can do foolish things like putting on five pair of underwear or cutting an electrical cord with a pair of scissors to turn off the light. This is particularly daunting but necessary.
Be prepared. Ok, you can’t really be prepared, but you can train yourself to realize that each day will bring its own challenges, burdens and goals. I felt this crazy sinking feeling each time Mom stood in her living room and told me she had to go home. By the third or fourth time it happened, my sense of disbelief gave way to a sort of practicality in helping her find her way home.
Accept their non-normative behavior. This is a hard one. It really depends on whether you can accept what they’re doing. Should I let Mom sleep in her clothes? What about wearing her glasses to bed? How about putting on a winter coat in the middle of summer or eating sliced grapefruit in a sandwich? Singing loudly in public? Wearing mismatched clothes? Refusing to wash her hair? Some of these behaviors resolve themselves as Mom’s abilities falter and she relies on a caregiver to make her food or choose her clothes. Others you just might have to put up with until you find a solution.
Use their memory loss. This might sound cruel, but if you know they won’t remember what you asked or requested five minutes ago, ask again in another minute. It makes me feel guilty to do this, but the results are worth it. Maybe this time they’ll acquiesce and take off their glasses or swallow their pills. You can show them the same movie or sing the same songs over and over and they’ll never get bored. They also won't remember any painful experiences, the ones that eat away at you because you do remember.
Pay attention. Yes, I'd rather be on my phone, or furthering my own agenda, but if I’m not focused, not only will I miss Mom's amazing statements (“That man is wearing sleeves on his knees.”) but she’ll also manage to do something silly like fill the cooking pot with water so she can have a drink.
Don’t take it personally. When she’s angry, Mom lashes out. She calls me horrible names and curses like a sailor. She uses words I never knew were in her vocabulary. It’s not personal. Really. These are imbalanced brain chemicals and tangles speaking. Deep down she still loves me, and when her anger has ebbed, she’ll let me know.
Take time for yourself. Oh, this is a big one. There is a reason people hire non-family members to care for their loved ones. We are so close, so connected, that it is hard to separate our own needs from the people we love most. Make sure you have good, responsible people backing you up and giving you down time from caregiving. When you have rest and distance, you are a better you.
My dad came back last Thursday after two weeks of being away. Mom was already asleep. We talked late into the night about caring for her, how hard it was, what we could do better, then headed to our beds. When Mom woke up the next morning and saw him lying beside her, she didn’t even realize he’d been away. I’d spent two weeks keeping her calm in his absence—because his absence made her unbalanced—and it was all wiped away in a single instance. How’s that for gratitude.
For all my dad does, for his loving care of Mom, I salute him. I have newfound depths of admiration and empathy for him.
Rosh Hashanah, the Jewish New Year, is less than two weeks away. The first thing I think about baking is honey cake. Of course, when my daughter told me she’s going off flour to test for celiac disease, I started thinking about the wonderfully easy apple crumble recipe I love to make. Oats, apples, honey. That will do it.
I’ve been making this dish since my college days in Oberlin when I worked and ate at Fairchild Coop. And it’s still as delicious as it was then.
10 to 12 medium red apples, peeled and cubed
2 Tbsp lemon juice
¼ cup brown sugar
1 tsp cinnamon
3 cups raw oats
¾ cup gluten free flour
1½ tsp cinnamon
½ tsp salt
¾ cup oil
¾ cup honey (or date honey)
½ cup orange juice
Peel and cube apples and toss with lemon juice, sugar and cinnamon. In a small bowl, mix oats, flour, cinnamon, salt, oil and honey. Spread about half the crumble on the bottom of a pie pan then pour in apples. Top with remaining crumble and pour orange juice over the top. Bake uncovered for 40 minutes on 375°. Serve warm.