Dementia’s Toll

CK and friend, December, 2022

It happened so fast: the downhill mental slide; the loss of cognition. The last time we met, we celebrated the winter solstice in my backyard. It was just the two of us. I wanted to give her my full attention because her speech and memory were deteriorating. She walked the candlelit labyrinth unaided, then sat bundled up in her long coat as I took my turn. Suddenly I heard, “My friend Cynthia…she loves me.” It was halting and third person, but it was a beautiful declaration; an appreciation for the time and effort I’d made to pick her up, feed her and bring her to my home.

In December, my friend could still communicate, albeit with difficulty. As an interfaith minister, she presided over the signing of my son and his wife’s marriage license at a nearby tavern. I desperately wanted her to do it. It was a final vote of confidence; a recognition of her life’s work. Her text messages were garbled the week before the ceremony. I engaged a back-up officiant…just in case. At the crucial moment, around the table at the tavern, we handed her the papers and held our breath as she carefully, with supreme concentration, answered the questions on the documents and slowly scrawled her name on the signature line. The words were mostly legible, the sentences mostly complete. The paperwork was approved and delivered to the married couple a few weeks later. I felt relief, on so many levels.

These days, I call and leave messages. When, and if, she calls back, her words are confused, frustrated attempts to convey the logistics of where she’s living and how she’s doing. I’ve tried buzzing her apartment. I’ve called her former employer to ask her whereabouts, but confidentiality prevents the release of this kind of information. I realize, starkly, I may never see her again. We have no mutual friends. I do not know her family. How could it come to this? Should I have anticipated her decline, talked to her about it and asked how we might sustain our friendship once she was no longer fit to reach out?

Caring for people with dementia is a tricky tightrope. We balance high in the air, wobbling precariously between love and resentment, duty and exhaustion. In truth, maybe I didn’t want to see the severity of her condition and the rapidity of her decline. It takes time, energy and incredible emotional strength to care for people with memory loss. It compels us to imagine our own demise. Will we meet the same fate? Will we be taken care of? By whom, and at what cost, physically, emotionally and financially?

In this episode of CK Unmuted, my friend and neighbor, Ramona Salotti, talks about caring for her husband, who is in the early stages of dementia. Listen to the podcast with Mona and check out the resources she recommends below. There are amazing organizations, lead by amazing people who dedicate themselves to helping others on this journey. Following are Ramona’s recommendations for resources and organizations that help the care partners:

Books

Basting, Anne PhD. Creative Care: A Revolutionary Approach to Dementia and Elder Care. New York, HarperCollins, 2020.

Dunlop, John. Finding Grace in the Face Of Dementia. Wheaten, IL, Crossway, 2017.

Genova, Lisa. Still Alice. New York, Pocket Books, 2007.

Genova, Lisa. Remember: The Science of Memory and the Art of Forgetting. New York, Harmony Books, 2021.

O’Brien, Greg. On Pluto: Inside the Mind of Alzheimer’s. Expanded Edition. Brewster, MA, Codfish Press, 2018.

Richmond, Lewis. Aging as a Spiritual Practice: A Contemplative Guide to Growing Older and Wiser. New York, Avery, 2013.

Non-Profit Organizations

ARTZ Philadelphia. Enhancing quality of life for persons with dementia and their care partners through arts and culture. www.artzphilly.org

Alzheimer’s Association. The leading voluntary health organization in Alzheimer’s care, support and research. www.alz.org

We’ll All Breathe Easier

Image by Freepik

Imagine a world without co-pays, deductibles, premiums, Explanations of Benefits, pre-existing conditions, tiers, in-network and out-of-network providers.

I talked to two Capitalists the other day, one in favor of Medicare for all, one on the fence. I initially wanted to talk to small businesses in Philadelphia about Medicare For All and their challenges with our current healthcare system. Some ran off screaming. Some apologetically replied that they didn’t know enough about it. Many just flat out ignored my request. It’s clearly a delicate matter, fraught with agita and fear.

But COVID happened, and I watched how countries with national healthcare systems responded. Israel and New Zealand imposed swift, strict measures to contain the spread of the virus. Their leaders masked up and respected the admonition to socially distance. Their healthcare infrastructures, though strained, were better equipped to handle the flood of COVID victims. Their people didn’t worry that their healthcare system, driven by profit and plagued by inefficiencies, would bankrupt them.

Millions of Americans lost their jobs in 2020. When they lost their jobs, they lost their health insurance. The unemployed could choose among several bad options: go into hock to buy a plan, buy a crappy mini-med-type plan that’s pretty useless if you have a significant medical problem, or go without. 

Both Israel and New Zealand have public health systems with an option to supplement with private insurance. Their citizens do not lose their marbles   - or their lives - if they lose their jobs. 

I decided it was time to get educated about Medicare For All, also known as single payer. Over the past two months, I’ve studied it, done a TV show about it, interviewed labor people, insurance brokers and small business owners to get a pulse on how people feel about a single payer system for the United States.

“We can’t go on the way we are now,” says Susan Thomas, a retired Fortune 500 HR director, who lives in Philadelphia and currently consults. “We’re in a mess right now. It’s a disgrace the way things operate in this country. I’m a business person. I’m very much a Capitalist. I’m not a Socialist, but healthcare is a basic human need. Why shouldn’t we, as a nation, provide it less expensively? There’s a lot of waste in the system. Every doctor needs 90 clerical employees to handle the variety of plans. Certain things are better done in a centralized way. Medicare runs beautifully. There’s no reason you couldn’t extend it to the rest of the population.” When HR experts like Susan Thomas speak, people like me listen.

The other Capitalist, my friend Doug, is very uneasy about Medicare For All, even though, he admits, his experience with Medicare as a senior is great. “What I wouldn’t want to see,” he says “is removing private insurance companies from the mix. I don’t believe that the government and bureaucrats run things efficiently. Healthcare is better controlled with competition in the private sector.” Furthermore, says Doug, the countries that have a single payer system, have had years of experience implementing it. “It will take decades for us to figure out how to do it. This country doesn’t know how to do it. We will screw it up!”

I don’t buy Doug’s argument, simply because we already have a single payer system in the U.S. that’s working just fine. People over 65, including Doug, love it. It’s called Medicare. Just because it takes time to implement it, doesn’t mean we shouldn’t do it.

My husband and I both run our own businesses. We pay $1,500/month for our policy. We wonder, painfully, resentfully, what we could do with $18,000/year. I rarely use my health insurance. When I do need medical attention, I go the alternative medicine route. Herbs, exercise, chiropractors and acupuncture usually do the trick. But, of course, they’re not covered. 

Businesses, especially small businesses, would get huge benefits from a single payer system. Susan Thomas explains: “Small businesses who cannot afford to, and aren’t required to, provide health coverage, wouldn’t have to worry about it. It’s not only that health insurance is very expensive, often 35% of a company’s budget, it’s also the fact that you need time to administer it…clerical support. It’s a lot of work!”

I ask Susan to address the strong resistance from the Medical-Industrial Complex (Big Pharma, hospital chains and private insurers), who send battalions of lobbyists to Washington to fight single payer: “Big Pharma could still do well because as a society you still need the same number of drugs. You just don’t have as many intermediaries. The big insurance companies would be contracted by the government because they have the expertise in claims administration.”

Ultimately, our taxes would go up, but our overall costs would go down. I’d opt for a model like the one in Canada or Spain. In both of these countries, citizens get a basic plan, provided by the single payer (the government), and people can buy additional coverage if they want additional kinds of care.  

I don’t want to move to Canada or Spain, though I’ve been tempted. I simply want a healthcare system that works.