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I Might be Losing My Mind
When they buzzed me into the locked facility, I asked the staff person to help me identify the person I was to visit. The brightly lit room was mostly quiet except for the TV playing on the wall. I had only spent time with one other dementia patient as a hospice volunteer, and I wasn’t sure what to expect. As the staff person pointed her out, I walked over to the table where she sat with three other women, and smiled. In her direct way, she asked, “Who are you?” I explained I was a hospice volunteer and I was there to meet her and spend time with her once a week. I asked her if that was okay with her, and if I recollect correctly, she shrugged her shoulders.
Over the next several weeks, I spent time trying to find out more about her, her childhood (which dementia patients sometimes remember well) and the kinds of foods she liked. She had grown up in a New York Italian family, so it wasn’t hard to guess some of the meals they had.
Each time I arrived, I had to be prepared to be a stranger to her. After a few months, though, she usually recognized me shortly after I arrived, and reached out for my hand with a smile. Sometimes I visited on days when they had guest singers. The patients and I loved it and often sang along. On other days I figured out that she liked coffee table books with beautiful photos. We looked at photos of animals from the Phinda Game Reserve. I think her favorite book was of Italy, especially photos of the sea and the fishermen in the villages at work. It was a way for us to engage with each other and enjoy the pictures, too. And for her, the photos were always new.
Then Covid-19 hit. And then I had cancer surgery and chemotherapy. My doctor suggested I minimize my time with strangers for a couple of months after my treatment. The lovely patient I had visited was transferred to another facility, and I lost track of her; she was likely assigned another volunteer. At this point, if she is still alive, any memory she might have had of our time together over two years is probably locked in a vault of her mind, never to be revisited.
* * * *
I began thinking of this patient after reading an opinion piece in the Wall Street Journal on dementia and other related conditions. Although I thought I was fairly well-informed, particularly on identifying Alzheimer’s and dementia symptoms, I learned some new information. One fact that surprised me was regarding diagnosis:
‘Neurologists say blanking on the names of acquaintances or having difficulty remembering dates from the past, especially when under stress, can simply be part of normal aging,’ says a Feb. 10 NBC News report.
Such pieces typically note that only a medical doctor can diagnose cognitive impairment and dementia. That’s true, but it’s also true that dementia and mild cognitive impairment are hugely underdiagnosed. One study found a nondiagnosis rate of more than 90% for mild cognitive impairment, suggesting 7.4 million Americans unknowingly live with that condition.
Some tests are easy to administer under medical care:
Many older people also don’t get tested because they consider their failing memories to be a normal part of aging or stress. But diagnostic tests now in development could determine whether someone is mentally impaired simply based on how he speaks or walks, or even with a self-administered blood test.
Even Artificial Intelligence is being used to diagnose cognitive impairment, although the FDA and the Centers for Medicare and Medicaid Services have not approved of its use yet.
Why, you might ask, have I taken such an interest in cognitive impairment? First, let me reassure you that at age 74, my annoyances are mostly limited, as far as I can tell, to trying to remember someone’s name or why I just entered a room. Nevertheless, I am concerned. I wonder if I would be more comfortable living in ignorant bliss about my mental condition, or knowing that in ten years I will likely have dementia. If I have an early diagnosis, I may also be able to take medications to reduce symptoms, too, or delay the onset.
I remember watching a hospice training video on the subject that included a woman who was in the midst of developing Alzheimer’s. She was interviewed on a day when her cognition was stable, and knew what was happening to her and how her cognition would continue to decline, and my heart broke, watching her distress. She was trying to deal with the onset with courage and grace, but the tears in her eyes told the underlying story.
In one way or another, we are all losing our minds. The loss is inevitable, just like death and taxes. I just hope if I experience dementia, I can handle it with grace.
Time will tell.
Published in Culture
I’m seeing it up close and personal with my mother-in-law, who lives with us. The most disturbing thing is when she has conversations with people who aren’t there (e.g., my brother-in-law, who lives in NY). She was always sharp and would kick your butt at any card game.
I’ve told my adult children that if I ever get like that, they are to take me to Churchill, Manitoba and put me on an ice floe. I’m only half-kidding.
I hope people will feel they can share their own concerns or their concerns for others. I know some of you have gone through this experience with loved ones and you may want to share a story.
I’m so sorry, MWD. It must be so painful. And I understand your “half-kidding” sentiment. I worry how I might affect others if I experience dementia.
My wife and I are both with you in that concern, Susan. Prayers for you.
Remembering people’s names has always been a weakness of mine, so it is not an area of cognition that I could use to judge whether I am slipping. But I do have trouble occasionally bringing up the exact word I would prefer using in certain contexts. My wife is outstanding at remembering people’s names. She has always had that gift. Dementia is the bain of aging, but physical malady is not far behind. Other than a bullet, there is no easy way out.
I exercise regularly to try to fight aging and have been relatively successful. But that doesn’t stop the clock ticking. And I read and do crossword puzzles. I hope that helps.
All of the effort you put in at Ricochet has got to help, mentally, as well.
There’s always fentanyl. I wonder if the overdoses are not a secret suicide.
Isn’t that pretty much what hospice does? Or am I misunderstanding their mission?
Absolutely! And not just composing posts, but when we have conversations–it makes me think!
Do you mean, help people commit suicide?? No. Hospice is called when, for starters, a patient may have six months to live; usually they are called very late and the patient dies in 2-5 days. We are there to offer palliative care, because healing is not an option, although some people live for years; they don’t show any improvement, but they don’t die, either.
Bless you a thousand times over for being part of this woman’s life.
What has been troubling to me about Alzheimer’s is the number of close and loving family members who find it too distressing to visit parents or older friends once Alzheimer’s has a hold on their loved ones.
Our society doesn’t teach us to understand that the best and quite easy thing to do is to just sit and be with someone.
I can’t tell you how many times I had such a client and the family member who had been their biggest support no longer showed up. They would call on the phone, and if the parent was in a more lucid stage, there would be a decent conversation. But a common refrain was “It’s just too painful for me to visit in person. This person is no longer my parent as I knew them.”
Luckily all my dementia patients had a large circle of family and friends. But it seems like so many people don’t understand that the only real skills set needed is to simply sit quietly holding the loved one while the parent watches their favorite TV show or listens to their favorite music.
You are so right, CarolJoy!! People are catering to their own discomfort instead of thinking about the person they are about to abandon. Thank you for your kind words.
The piece is behind a paywall, so I have only the passages you quote to go on. But I’m dubious about how terms are being defined. If millions of people are living their lives without knowing they have mild cognitive decline, I might argue that it is “part of normal aging.” If it doesn’t disrupt your life enough for you to notice, I’m not sure how it can be diagnosed as a pathology.
Is the idea that undiagnosed mild cognitive decline is a reliable early indicator of dementia in the future? If so, then maybe I can see the issue. On the other hand, I doubt very much if such an early diagnosis could tell you much about when or whether you’d decline enough for it to matter. Will it be before you die of something else?
It’s kind of the same tradeoff we have with a lot of medical testing. Decades ago when my wife was pregnant, I remember there was some debate about the value of the so-called “triple screen” blood test, which tested for certain markers of high risk for chromosomal abnormalities like Down syndrome. Some people argued that if you already know you’re going to have the baby regardless, and the test can serve only to stress you out over something that probably won’t happen, why have it done?
Similarly, I’ve sort of lost track of what the current recommendations are for prostate cancer screening, especially for older men. Prostate cancer is so slow to progress that even if you know you have it, there’s a good chance it’s not what’s going to kill you. But it’s hard to shrug and just go on with your life knowing that you have cancer. Most men, with that diagnosis, will likely opt for treatment, which (even when successful) can have side effects that seriously affect quality of life. Is it better to not know?
The most dramatic example I know if is Huntington’s disease, a fatal degenerative neural disease that is passed on genetically. If one of your parents had Huntington’s, you have a 50% chance of inheriting it, and you can get a test that tells you with certainty whether you did. Is it better to skip the test and just live your life, accepting that nobody knows what the future holds? Or to have the test so you can be sure to make the most of whatever time you have?
Dementia is a terrible thing, and I hate to think about the possibility that it might come for me someday. But — and maybe this is just denial — I put this in the category of not worrying about problems I can’t do anything about.
First I want to address your comment here. That is where I am, in this moment. Just live my life and do the best I can.
I forgot about the paywall, so let me give you a few of the links she used:
https://www.nbcnews.com/health/bidens-memory-issues-draw-attention-neurologists-weigh-rcna138135
https://dornsife.usc.edu/news/stories/hidden-crisis-of-mild-cognitive-impairment/#:~:text=Two%20studies%20from%20the%20USC,are%20silently%20battling%20Alzheimer's%20disease.
https://alz-journals.onlinelibrary.wiley.com/doi/full/10.1002/alz.12537
https://aaic.alz.org/releases_2023/finger-prick-blood-test-alzheimers-disease.asp
I agree with your understandings about the other conditions. The latest I’ve read on prostate cancer is that more and more men are opting to just let it alone. As you say, the after effects of treatment can be difficult.
Thanks for weighing in, BXO.
Generally, narcotics are liberally given for pain in dying hospice patients, and don’t particularly worry about addiction, because they are terminal and death is more or less certified to occur in less than six months (though it can last years). So, keep them pain-free. But I’m not aware that anyone prescribes narcotics to hospice patients for the specific purpose to hasten death.
I used to work with a man who referred to what he called “Noun Disease”. At almost 77, I can feel that coming on. I often have the sense of motoring down a conversational highway when I see the bridge (i..e. noun) out ahead. I can only hope that I can pull up the appropriate noun before I am forced into the river.
I have never been good with names – isn’t that what wives are for? – so that doesn’t bother me.
What does bother me is short term memory. As an Engineer/programmer, I was able to hold hundreds of details in my head. I still work on my own technical projects, but if I put it down for a day or so, I have to start over. That is a worry. I don’t want to stop.
For a different take on the issue, my grandfather had what I guess was dementia and spent his last days with my uncle who was a country doctor. Even at his most confused, he was always the polite southern gentleman and my uncle said it was his experience that people kept their core (… looking for noun …) personality even when they were losing the outer layers.
I think this is true with Joe Biden who more and more shows his nasty, belligerent side.
For you and any of us worried about dementia — the following are not fool proof, but offer hope.
Avoid toxins in all forms whenever possible. Don’t use Glade, Febreeze or other chems when a simple alternative is to light a match and blow it out in the smallest room in the house.
I include the annual flu shot as being a major source of toxicity. These injections have been known to contain mercury, and they always contain aluminum. The shot rarely offers more than the 23% efficacy that a sugar pill placebo would. The authorities ruling over us regarding our health matters also will not admit that as we get older, the many flus we have already experienced and survived are a strong immune factor preventing us from getting whatever the current season flu strain will be.
I did almost 30 yrs of elder care. I never once lost a patient to the flu. Strokes, heart attacks, long lasting bouts of pneumonia – but not once did a patient die from the flu. I suspect that those older people who do die of the flu were on their way out anyway. (Plus even a young person can die from the flu.)
Avoid bad falls as much as possible. A bad fall can trigger Parkinson’s some years later. If needed, call in a local dog trainer who will teach your dog not to trip you when the pet is demanding food or attention. If you are over 60, put grab bars in the shower, as the shower is a huge source of falling down for people of all ages, but younger people have better reflexes. Grab bars offer us seniors a second shot at not falling.
Try and be happy. This can be difficult when dealing with extreme grief. But in the usual up’s and down’s of life, having a way to be out in the company of others – even if it is just a visit to a local coffee or donut shop several times a week – boosts our endorphins and lowers the cortisol levels in our bodies. Cortisol levels seem to be an indicator for a predisposition for Alzheimer”s and other dementias.
If you have some activity that is calming, like reading certain types of books or listening to certain kinds of music, make sure that if you do get depressed to have those on hand.
Studies are showing that it is possible to boost the contentment level of entire nursing homes of older people by playing music consistent with their coming of age time periods. So the Greatest Generation thrived with endorphin boosts from swing music and Sinatra, Crosby, etc while we Baby Boomers might need Pink Floyd, the Stones, Beatles and Fleetwood Mac. Upcoming generations might need heavy metal, and God help the world, large doses of rap music when they join the rocking chair brigade.
Dad is at the age where he’s given a short list of words that he will be asked for when his examination is over. The list he was given was “ball, book, tree.”
“That’s a coincidence. It was the same list last year.”
He passed. Ain’t no flies on him.
Great post. Brought to mind back when President Reagan had slipped into Alzheimer’s, his son Michael recounting visits after his father no longer knew who he was, but always seemed to greet him with a smile.
Once he asked him, “Do you know who I am?” and his father replied, “Sure, I do. You’re the guy who always hugs me.”
I’ve seen some places that “care” for those with dementia. If a body can cope even in the slightest, it is in their best interest to remain undiagnosed.
Reminds me of a story:
Two older men were sitting on a couch reminiscing about old school days — the teachers, the girls, and such. One man says, “Do you remember that pretty blonde-haired girl that married the football player?” The other man says, “ I am having trouble remembering her name…uh, what’s that flower?” “Daisy? Petunia?”, replies the first man. “No, it’s the one with long stems, and thorns,” says the other man. “Oh you mean a rose.” “That’s it!” exclaims the other man, who then calls out to his wife: “Rose! Rose! What was the name of the pretty blonde-haired girl in school who married the football player?”
Many years ago, when I was a boy, a family member made me promise that if they ever started losing their mental faculties, I was to push them out of a helicopter at altitude. That person was most assuredly not joking.
I did not fulfill my end of the deal.
Its ok – they probably forgot the deal.
That’s perfect, WS. Thank you. ;-)