The reality is the caregiver—whether he or she is a spouse, adult child, relative, or friend—is the single most challenged, misunderstood, and ignored participant in the care and treatment of a person with Alzheimer’s disease.
~ Porter Shimer
After a visit with my mom, I sometimes say something like this, “I finally figured out what works today: just tell her where to put her feet, and quit explaining where you’re taking her, why she needs to be there, etc.” A valid lesson.
But what I’m really learning is, there is no figuring out this disease.
The most predictable aspect of Alzheimer’s disease is its unpredictability.
That noted, there are general guidelines that help. Most books I’ve read on Alzheimer’s Disease (AD) include not only guidelines, but also cover the gamut of diagnosis, treatments, research for cures, etc.
This one does, too. New Hope for People with Alzheimer’s and Their Caregivers by Porter Shimer is a great resource in all those areas.
But because my most immediate need is caregiving tips, I love this list within Shimer’s book:
The 10 Commandments of Effective Caregiving
1. Be ready to improvise
Not only is every day new to those with AD, it will also bring new challenges to you as the caregiver. Just because you were successful with one strategy one day doesn’t mean it will work the next time.
2. Expect the unexpected
We had prepped days in advance for Mama to have oral surgery last week—but when the morning of surgery arrived, it still couldn’t happen.
AD is a progressive disease, a few more brain cells are destroyed every day, so you can’t predict what changes may show on any given day.
3. Be sensitive to sensibility
One of the last human traits eroded by AD is a sense of pride. When my sister and I helped my mom undress for the doctor last week, we kept assuring her, “We’re not looking.” That mattered to her.
Everybody wants and deserves to be treated with respect, regardless of their mental capabilities.
4. Assure security
Keep things simple—hugs, confirmations of love, feelings of safety. In complexity lies confusion, and in confusion lies the person’s anxiety and despair.
Mrs. B was anxiously roaming the halls in her bathrobe last week, looking for someone who knew the way to Somerville because it was almost time for her mother’s funeral. I told her I knew the way and would take her, so go get dressed.
That was all she needed; not to get to a funeral held decades ago, but assurance of being cared for. She wandered back to her room in peace.
5. Strive for peace
Even though they may seem childlike, people with AD can’t be treated like children. We train children to grow into independence; we care for people with Alzheimer’s to enjoy, with meaning, the moment they’re in.
That means that “giving in” to those with AD is sometimes more helpful than harmful. Redirect behaviors instead of reprimanding.
6. Sympathize—don’t patronize
There are many things my mom can no longer do alone, and she has to have help. When she’s aware of it, she hates it. So we try not to make her aware; we’re learning to keep our directions short when we’re guiding her through something, one step at a time, so she can feel accomplished rather than frustrated.
7. Pacify using the past
Because a person with AD has lost the glue to make short-term memories stick, dig into the past for conversation and activities. My mom still enjoys looking at photo albums together, and she surprises me by remembering names of people from long ago.
“It’s the present that poses the greatest challenge for people with AD,” says Daniel Kuhn, author of Alzheimer’s Early Stages. “Compared to that, the past is easy.”
8. Let less be more
It’s hard watching my mom try to zip her sweater. She fumbles and makes it look impossible. But as long as it’s not frustrating her, I try to keep hands-off and let her do it herself. Research suggests that people with AD respond better if we’ll loosen our grip sometimes to let them do what they’re able.
9. Make caregiving a family affair
Thankfully, I don’t have to imagine it any other way. I have three great siblings who all love and care for my mom as much as I do, and we each have the active backup of our spouses and children.
But for those who don’t have supportive family, be especially attentive to # 10…
10. Know when to ask for help
If you’re feeling overwhelmed, odds are that the person you’ve caring for is feeling overwhelmed, too.
“Caregivers need to realize that if a situation is becoming highly stressful for them, it’s also becoming highly stressful for their loved one. Caregivers often feel torn between doing what’s best for their loved one and doing what’s best for themselves, but really there’s very little difference between the two.” ~ Dr. Juergen Bludau
Visit the Alzheimer’s Association website and get the number for your local chapter (call 1-800-272-3900). Visiting the office in my city was immensely helpful. See what help is available for you and use it!
This book also contains a list of the 10 Most Difficult Behaviors (and what to do about them)—I’ll save that for a later post. And it also gives visiting tips from what looks like another helpful book, Visiting Mom, an Unexpected Gift: A Guide for Visiting Elders with Alzheimer’s by Sherry Bell.
If you were only going to read one book on Alzheimer’s, I don’t know which one I’d recommend, but this one by Shimer definitely makes my short list.
* * *