In last week’s episode, our Alzheimer’s journey accelerated from slow march to freefall. It highlighted something at the top of our formidable (and hypothetical) list of do-overs: getting help for my parents earlier. Why is the seemingly simple task of bringing in outside help, when clearly needed, so hard? Let me count the ways...
TALK IS CHEAP, AND INVALUABLE
Most of the do-overs are based on conversations we never had with my parents, or had too late. The biggie in this category is the discussion about long term care. What did they absolutely want or not want? How did they envision their care if one or both of them were incapacitated? What were their resources to pay for care? Even if the discussion had gone nowhere, just calling out the concern would have picked a thread free. From there it would have been easier to pull, so we could start unraveling the topic. Also, having that conversation in play opens up helpful resources, like this one at Compassion and Choices, that walks you through end of life planning and choices. That’s skipping ahead a bit though; today, I’m just talking about getting some help, any help, in the door.
In a perfect world, we would have gotten help for my parents years earlier. It would have started with some small, regular household help which ramped up as needed and eventually bridged into companionship and care-giving. They would have been comfortable with trusted people coming into their space, and with the concept of ceding some control and privacy in exchange for improved safety and health. In that same perfect world, they would have made it easier for us to do that!
HELP US HELP YOU
We did try, many times, to talk about getting them help beyond their twice monthly housecleaning. “We’re fine,” was Buck’s refrain, while Nina pretended not to hear the start of an unpleasant conversation on the topic. They liked their privacy and, though they would never admit it to our faces, were annoyed with us for trying to shake up their routine or “out” them. Other than yard work, which had always been acceptable, any help they agreed to was quickly scaled back or phased out. They conspired in their resistance, like the Scooby Doo villains who resented “those meddling kids” who interrupted their hijinks.
Also, it was hard to bring up their needs without seeming to cast judgement on Buck’s care-taking abilities. He accepted full responsibility for Nina’s welfare. Enlisting outside help would mean he wasn’t capable of doing something he’d long ago vowed to do. It was only much later, when going through Dad’s files, that we discovered emails and letters to him from friends offering support and empathy for Nina’s Alzheimer’s. That was the first we knew he’d even talked about their challenges with anyone. We’d never know if he had accepted their help or sought their advice.
Acknowledging the need for help and accepting it can be touchy for people who have been independent for sixty plus years. These couples who mate for life are wily. They use their survival skills to cover for each other, obscuring their individual proficiencies, or lack thereof, and keeping anyone from seeing their acute needs. Plus, their lives are set up to reflect a composite score of their combined abilities and to mask individual weaknesses.
For example, my parents shared both an email address and a computer. That meant that all incoming communications went to them both. No private discussions there. As for the outgoing communication, rather than vie for her own time at the computer to send and read email, Nina took whatever time available to her after Buck relinquished his spot in front it. Consequently, we understood why her online communications, when they happened, appeared rushed and were devoid of regular punctuation; later, we barely noticed when the emails became less coherent, and then stopped altogether.
The same happened with outgoing phone calls. She’d never been a huge chatter on the phone, but she had always called regularly, and occasionally put Dad on the phone if he had a specific question. More and more, it was Dad initiating the calls, often on speaker phone. Mom rarely called, and then later, rarely answered calls. When she did answer the phone—always in the same cheerful voice—she would deflect the conversation towards Dad and hand the phone to him as quickly as possible.
MARCH OF THE PENGUINS
On home turf, they knew how to make everything appear normal. Their true needs and dependencies only surfaced outside of their controlled environment. One such time was when they visited my family in New Hampshire in the dead of winter, to see ski races of course. As expected it was freezing the whole time. Whenever they walked outdoors at the various venues they were glued to each other’s side. “It’s like March of the Penguins” I commented to my husband as we watched them waddling across the snow between the lodge and the finish line—propping, leaning, redirecting as they went. “That’s mean!” said my husband Chan, who always deeply respected their pluck; but then, watching more he agreed, in true Buck parlance that, “I might not be wrong.” We saw a sweetness and beauty in their devotion, dependency and shared mission. And a warning.
This was also when we realized they weren’t eating. Ever since having my own kids, I had taken charge of shopping and cooking when we visited Buck and Nina. Because of that, I might not have connected the dots in their home. In my kitchen, however, the Penguins had lost their cover.
Bad weather delayed their flight home for several days, and I ended up sharing many more meals with them than I had anticipated. Buck, who never weighed in much on culinary things, other than to suggest something could be a bit hotter or colder, seemed especially complimentary of my creations. When he raved about the breakfast I served him I was astounded, considering it was oatmeal. At every dinner Buck cleaned his plate, then had seconds, and often thirds until everything was gone. Finally one night, after another effusive round of compliments to the chef, I asked what they had been eating at home. Dad couldn’t think of anything. “Like what’s something you’d have for dinner?” I pressed. “Your mom doesn’t cook much anymore,” he said, not wanting to bust her, but also having no ready answer.
Once we realized they were not eating, Buck did agree to enroll in Meals on Wheels, another of the incredibly valuable services we previously knew nothing about. The regular food deliveries were good and bad: Good because they took the shopping and cooking burden off mom, and came with the bonus of daily human interaction, which my mom probably craved more than the food. Bad, because as long as Buck was getting fed, all his basic needs—and therefore their needs—were taken care of. Never mind that they were still missing the part of meals that Nina loved most—the company; and that mom still felt responsible for doing the laundry, cleaning the house, bathing herself, all tasks she could not really handle. Having their basic nutrition needs met created one more barrier for getting the help they both needed.
STANDING DOWN
I reached out to a local friend and nurse for recommendations on finding in-home care for the things mom could no longer do and Buck thought unnecessary. I also hoped to find someone who could broaden her world beyond the stock market news, ski racing and WWII documentaries that Buck streamed online and on TV. It had taken another six months for my parents to agree to and arrange the meeting, at which point they reiterated that they needed no help beyond Meals on Wheels.
My friend reported in an email back to me:
“Nina was very clear that she was comfortable with the way things are. She said she was not looking for excitement and enjoyed being quiet and enjoying each day. She does not necessarily want more people coming in and helping or taking her out.”
And that was that. At some point, we needed to respect their choice and stand down. Because of that choice, however, whatever care situation we found for mom now—with Buck gone—would be entirely new, with strangers.
Next up: Looking for a way to feel the full weight of public opinion and judgement on your shoulders? Consider putting your parent in assisted living. Good times. Stay tuned.
Thanks for sharing this, Edie. We struggled to set up care for my mom in the beginning of her Alzheimer’s journey, but at some point we couldn’t avoid it anymore. My brother and I feel bad about it sometimes, but she was living alone and we couldn’t stand down. We had to make sure she was safe and taken care of. These are such hard decisions!
Oh Edie, you write so poignantly about Nina's situation and your parents unwillingness to consider what might happen in the future. I am 82 now and trying to make sure my kids know what I want when the time comes. Maybe it's easier for me b/c I have been single for a very long time and know that I'm the only one who can do that. Having a spouse and depending on the other person for most everything financial can be a trap. Women, in particular, are vulnerable. And those are not easy conversations to have. You have always been vocal and I for one really appreciate it. Whether it's about raising ski racers or facing your parents' mortality. Keep up the good work! Sam (aka Mary McKhann)