My perspective on providing care isn’t widely shared. I realized that I’m consistently disappointed when I assume others share my perspective. Not everyone sees value in active companionship for one whose memory is absent.
By Pamela R. Kelley
Alzheimer's Reading Room
I hold a hope and a belief that the past will be improved upon. I find this practice particularly useful in my role as my mother’s caregiver.
So regarding that caregiving as our year draws to a close, I’ve been examining what worked well in 2011? What didn’t? I’ve also been reflecting on how I will build on these lessons for the New Year.
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This year I’ve learned how important it is for me to slow down as a caregiver.
For most of my adult life, I’ve been conditioned to multi-task, to think ahead, to embrace complexity and use it to my advantage. But none of that really works to our mutual advantage as I provide care to my mother as Alzheimer’s exacts its costs. This was the year that I learned to quiet my overactive mind and concentrate on being fully present in the time I’m honored to spend with my mother.
I learned that my mother’s antennae were highly sensitive to my attention, and that if my attention was diverted from her while I was in her presence – she knew, and reacted. With heightened attention to her body language, her obscure remarks, her expressions, I began to understand how important my total attention was to her sense of comfort and contentment.
This led to small adjustments in my behavior. I made a point of silencing my iPhone before spending any time in her company. I learned to ignore its vibration in my pocket. I learned to keep my gaze on my mother even if someone else entered the room and addressed me. I learned to announce what I was going to do before doing it.
“Hey Mom, there’s a knock on the door. How about I answer it?” That’s not any harder than standing up and answering the door. But it makes a difference to my mother, who needs to recognize that when I’m getting up it’s not to leave her alone. “I’ll be right back,” I’m prompted to say as I watch her carefully putting all the inputs together – the knock, my reaction, my movement away from her, the voice of another. Reassurance is needed, but if I’m moving too quickly to address something as simple as a knock on the door I can’t see the importance of that word of reassurance.
My mom needs to know that just because the tableau is changing, all of the important things remain the same. I’m still by her side, and she’s still at the center of my attention.
The other thing that I’ve learned this year is to love my mother with my eyes. She watches me like a hawk. I know how important it is to smile broadly, to look happy, to look relaxed. I can’t remember what precipitated this recognition in me – but I now know that if I crinkle my eyes when smiling at my mother, she’ll smile in return. If that smile resides only at my mouth, it’s hit or miss whether my mother reacts positively.
Here’s the trick of it: if I remind myself what a generous, kind-hearted woman my mother has been throughout our lives together, I cannot resist infusing my smile with deep affection. This has led me to the habit of composing my face more deliberately when I look upon my mom. No empty smiles. If the eyes aren’t in it, it’s not a smile that works. Such a small thing, but it makes a difference to my mom.
The next thing that sticks with me is the importance of being “just alike”. Mom will mirror my actions, and realizing this gave me a technique for getting certain things done.
We take our “vitamins” together in the morning: same plastic pill cup, same glass of water, same “down the hatch”. Mom may be suspicious (“What are these?”) or reluctant (“I’m not taking these.”). But when I hold her gaze and deliberately take a Vitamin D and an NSAID for my aching hip, she follows with her thyroid pill and her Namenda.
We have lunch together daily: the same meal, with us matching bite for bite. After lunch, we brush our teeth together in the same manner. There’s not a lot of talk, but a sameness in action serves as a comfortable prompt for her.
My perspective on providing care isn’t widely shared. I know this. I’ve realized that I’m consistently disappointed when I assume others share my perspective. Not everyone sees value in providing active companionship for one whose memory is absent.
Not everyone sees the importance of taking time to assess my mother’s comfort and ease before plunging into a task that affects her, be it the housekeeper or the supplemental caregiver or the dining room staff. Not everyone can find a smile and hold her gaze, waiting for that smile in return.
Not everyone can be a daughter (or son or spouse or other loved one). I’ve been disappointed when I’ve forgotten that fact.
Low points in the year occurred when I expected help from someone and it didn’t materialize. I work hard to remind myself that when help in this effort isn’t freely given, it isn’t much help at all. Begrudging help is heavy baggage I end up carrying.
I also recognized that my positive presence could be undermined if I spent much time ruminating about what will come over the course of my mother’s disease.
I want to be prepared, to have adequately planned for eventualities, to understand what can be known. But when that sort of forecasting tipped toward visualizing my mother in one year, or five years, or ten – then the impact upon my mood was too high a price. And my hawkeyed mother reacts to my moods every time.
Naturally at times my mother gets angry and upset and frustrated. Sometimes when she does, she says, “No more push-push”.
She uses this phrase to indicate that the pace of what is occurring around her is too rapid for what she can process at that moment. Her phrase gives me an outline for the coming year: No push-push. Stay wholly present in her presence. Slow the pace, whether it’s patterns of speech or preparing an activity or trying to do too much. Don’t borrow trouble. Deal with what is, rather than what could be coming.
Accept what’s given, and don’t lament what cannot be.
With that, I look forward to 2012.
Happy New Year. Don’t push-push.
Pamela R. Kelley is the full-time caregiver for her mother, after serving as her long-distance caregiver for more than four years. Before her caregiving role took primacy, Ms. Kelley directed an American Bar Association-approved paralegal education program at the University of Alaska Anchorage from within UAA's Justice Center. As she transitioned to full-time caregiving, she prepared a resource manual and presented lectures on long-distance caregiving to her UAA colleagues. She is a 25-year member of the Alaska Bar Association, and concentrated her years of active practice in the areas of commercial transactions and creditor representation in complex bankruptcy cases. Over the years, she has published many articles on topics as varied as cyber-stalking and antitrust law. Ms. Kelley lives, works and writes in Anchorage, Alaska.
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Original content Pamela R. Kelley, the Alzheimer's Reading Room