Excellent article. Alzheimers, dementia, horrible diseases. The gift is, the patient has no idea how bad they are, and caregivers, family, can surpass the selfish love to selfless love. It matters no whether they know us by relationship of wife, lover or child or by name, only that we are trusted, they are safe. For my OWN life, my only hope, is if I too am inflicted, as my step father was, that law allows a compassionate end, that I am treated as well as we treat our pets, and not forced to suffer through to a painful end.
I have early onset dementia, likely the result of getting my head smashed repeatedly tackling much bigger players playing rugby when I was young. You don't have to be that old to exhibit dementia. Furthermore, Alzheimer's is but one type of dementia.
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Beautiful, beautiful, beautiful.
“When cognition falls away,” he said, “what remains is the ability to love and be loved.”
My mother passed back in November after 6 years with Lewy Body Dementia. Her final years were filled with joy and she was spoiled rotten. She lived in the moment and almost always returned a smile. Dementia doesn't have to be years of being miserable. Your life is what you (or your caregivers) make it.
Always good to see the cup half full, but this piece fails to provide insight or solace.
"But aging is a high risk factor for cancer and mom is nearly 71."
The older I get, next year I will be 70, the more I realize how lucky I am. You know how many folk never get the chance? Bet your mom is and you might get lucky too.
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As with any dementia, I believe the two most important words are comfort and dignity.
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My marvelous, energetic, and opinionated mother's rapid descent into dementia last fall on Cape Cod has been unremittingly grim and tragic beyond my capacity to retell this sad tale. There has been one saving grace amidst the tears, however. She doesn't believe nor can she comprehend that Donald Trump occupies the White House. She occasionally asks why this clown is on TV so much, but fortunately does t grasp the truth. This is the good news for had she known of this national tragedy she surely would have died of a broken heart.
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My mom started worrying about getting cancer when her younger brother died of bladder cancer in his early 40s. Her worry only grew worse when one by one, her other siblings contracted a form of cancer, then died. She was the sole sibling when in her late 70s, she started showing signs of dementia.
Our family’s “joke” was that if she got cancer, at least now, she wouldn’t know it.
She lived until 92 when she died of complications of Alzheimer’s.
One of her last lessons to me: Don’t let worry shape your life.
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Thank you for this beautiful article. It makes me wish I had understood my parents' dementia better, and better participated in the loving gestures they so clearly enjoyed. As to the music -- I know every patient isn't the same, but my mother's hospice team told us she was singing on her deathbed. I know she lost the memory of some of the lyrics, but her sense of pitch never faltered.
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The crisis did provide an opportunity, an opening to choose love. Author's dad was right. Thanks for sharing insights, as our family journeys on the same road.
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What a tragedy for your family, to lose your mother to rapidly advancing dementia at only 71. It's so hard to understand that she will not get better--in fact will get worse.
The sibling holding health care POA for my mother-in-law insisted on full-on ICU care for a sudden illness, in spite of the advance care directive and my MIL's clear wishes not to continue treatment. Her body survived, but her mind is so far gone there is no enjoyment for her. It's a terrible situation for everyone.
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After my father died of pancreatic cancer at 79, my mother was diagnosed with Alzheimer's. I prayed that she would die , as my father had, within a year of diagnosis. But she suffered for another seven years which is the average for Alzheimer's with continual decline and loss of cognitive function. If, during that time, my mother had been diagnosed with cancer - I would've considered it a Gift from God and not sought treatment. Compared to Alzheimer's, cancer is a blessing in that it rarely allows its victims to suffer for so many years without relief.
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I could not agree more.
Why on earth would you put a dementia patient through cancer treatment?
I'm frankly astonished.
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This is such a lovely, poignant piece, and so relatable for many of us. I know first hand how difficult it is to witness a cherished and once vibrant loved one fall victim to not only dementia in one form or another but also a devastating physical disease. At first, we may feel sorry for ourselves, the primary care givers. We don't want to for, yes, it is selfish, and we want to think we are better than that. But we are human, and it is very hard to describe the pain of watching a parent, a husband, friend, or sibling lose bit by bit any connection to reality.
But as Ms Whitney so eloquently writes, a kind of miracle happens. Love and compassion transcend our human flaws. And what at one time seemed a curse of fate instead becomes a gift of the human spirit at its finest.
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We got the Alzheimer's and colon cancer diagnosis for my mother about the same time. She sailed through the surgery for the colon cancer, lived another 10 years with the dementia. They were a rough 10 years at times, but she always new life was tough and never blinked.
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Having witness both your mother's colon cancer and her dementia, what would you choose for yourself if you had the same diagnosis? Personally, I would prefer to die of any form of cancer rather than spend the last 7-10 years of my life dependent upon minimum wage health aids - in even the most upscale nursing home. Imagine not being able to get out of bed to use the toilet unless someone is available to assist you. To not eat or dress without assistance. No one deserves this.
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Let me play Devil's Advocate. By curing this cancer, you are letting yourself and your mother in for years of anguish as she vanishes into the limbo of dementia or Alzheimer's. She will not recognize you or sing songs anymore.
I ask that people in this situation consider not treating the cancer, and spare their loved ones and themselves years of anguish. Naturally, the dying process must be made as merciful as possible.
It is already too late for your mother to decide now that she does not want to live anymore.
Thank you for this touching story, and I hope the remaining years are peaceful ones, even if your mother is not really there anymore.
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Much of what you say might be true. She does say she and her siblings agonized about how to treat her mother's cancer and that they consulted with her neurologist about the matter.
To each their own. And yes, I found this a very moving story. Wishing the writer, her family and their mother well.
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My mother sang and enjoyed the life she had until the day she died. I thought this was a beautiful article and mirrored my experience.
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As a palliative care NP who works mainly with cancer patients, I appreciate your comment. It is difficult to imagine why a family would put their parent, who already has “moderate” dementia, through cancer treatment. However, to the author’s point, let’s think about this from a quality of life perspective. Mom’s current quality of life, as described by the author, is about as good as it can be in the middle stages of dementia. She was found to have a curable, early stage cancer, which if left to grow/metastasize, could cause tremendous pain and suffering (anorectal cancer is not something you would wish on your worst enemy). The question then becomes—is preserving Mom’s current QoL important, even though we know she is gradually declining with dementia, a process that can take decades? If family feels Mom would want to continue with her current quality of life and would accept some time-limited amount of medical burden to do so (read: cancer treatment w/curative intent), then go for cancer treatment. If family feels that Mom’s QoL is terrible and not worth preserving (clearly not the case here), and they are willing to forgo cancer treatment knowing that life will get much harder and more painful for Mom, then choosing palliative care is also an option (unfortunately, having both moderate dementia and an early stage cancer would not qualify Mom for hospice here). I think they made the right choice from a QoL perspective.
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I'm sorry your mother is sick, but her "gift" is also leaving you with the gift of warm memories. An emotionally comfortable end of life can make one's passing much easier on everyone in their circle, not just the afflicted individual themselves.
My father didn't have dementia, but had a similar story. He had brain cancer, which for some reason made him immune to negative emotions. He accepted his diagnosis matter-of-factly, refused treatments that would have slightly prolonged his life, and went about his business as best he could. He laughed when he got tangled up in his clothes or when something he wanted to eat sailed past his head, welcomed relatives he used to dislike when they visited, and eventually won the love of all the nursing staff who cared for him at the end.
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That's a lovely remembrance—thank you for sharing it!
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Thank you for this story. I'm especially touched by the way you clarify the the way that receiving the "good" that can emerge in the middle of a painful experience is not at all the same thing as turning your experience into some sort of falsely positive silver lining.
My husband died suddenly when I was only 30 years old. 26 years later, I am deeply grateful for the things I learned about love and life while I healed from that devastation. At the same time, I will never ever be grateful that my husband died. Devastation and growth do not cancel each other out.
Being willing to take in the healing and love that is available in dark times does not eradicate the pain we endure while going through those dark times. I'm grateful for your story's highlighting of that. People in our culture need to hear that more.
This story I wrote about what I learned from my husband's death might resonate with you and readers of this article: https://psiloveyou.xyz/12-things-i-learned-about-love-when-my-husband-di...
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Candyce, unfortunately your link brings a 404 message (page not found).
It's important to share with the uninitiated that we can have moments of connection with parents - or spouses - or others - who have developed dementia. And I am happy for your mom that there is a treatment that is not terrifying and seriously incapacitating to her.
Personal experience - my mom (vascular dementia) and friend's mom ( Alzheimers) and with others in their nursing home wing: many people in this state are in occasional, frequent or chronic distress over - well, over everything: where they are, where their old friends and family have gone, why no one can understand what they are trying to say, and so on. Their world can easily be made even more overwhelming through hospital experiences.
It is true that the ability to love and be loved is, we should remember, what they are left with - and what we should treasure. Good luck as you travel through this time.
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I don't understand exposing relatives to this level of care at the end of their lives, other than pain control. There are many in younger age brackets who can't get care their need while those of us on Medicare can.
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Allowing a person to suffer predictable pain and suffering when this can likely be prevented with a fairly simple intervention will not in any way help anyone else get treatment.
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This woman with “moderate dementia” may still have years to go until her dementia process progresses to the point where it takes her life. Why would her family condemn her to die a very painful death of anorectal cancer when with a small amount of medical burden/intervention, the cancer could be cured? This isn’t a black and white issue—think about the person’s quality of life—even for those with dementia this should matter.
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The patient in this essay is only 71 years old.
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Thank you for your beautifully written piece.
My mother was fortunate enough (IMO) to be diagnosed with a type of ALS that is accompanied by a progressive dementia. As her body failed her, I took solace in the fact that she became less and less aware of what was happening to her. She was a lovely, smart, outgoing person until her diagnoses. I do wonder what she would have thought of the whole affair. Her mind faded as rapidly as her body. Fifteen years have passed, and I miss her every day. I hope you and Mom continue to have meaningful time together. Her touch and her smiles are priceless.
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You're right about your mother's happiness to see you. My mother had Alzheimer and spent the last four years of her life in a nursing home. You can't imagine how happy she was to see me and my husband appearing, every time she saw us entering.
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Thank you for this beautiful article! My dad passed away 5 months ago. He was diagnosed with Alzheimer’s 4 years ago and loved music and singing to the very end! Unbeknownst to us and himself, he has cancer growing in his kidney and it spread rapidly. When he was in hospice we sang show tunes to him and played music. Often I wonder if the untreated cancer actually saved him from a slow, horrible deterioration from Alzheimer’s. Too sad to go there. I miss him every day.
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The answer to your question is yes— I’ve seen 3 grandparents go through dementia and a slow, protracted, disorienting, and uncomfortable death. I’ve also seen a grandparent with end stage COPD enter hospice with full mental capacity. He died with dignity.
I’d take the hospice exit any day.
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I watched my grandmother gradually succumb to kidney failure while struggling with Alzheimer's. Sadly, there is a relatively simple prevention that, had I known, would have avoided her Alzheimer's, chronic kidney disease and likely much of the long-term suffering. Doctors simply are not trained in medical school for prevention of disease and are not compensated to seek "cures" outside of Big Pharma or medical procedures involving a fee. Their job is to cure the illness after it occurs, not before.
Anyone interested in avoiding chronic diseases like Alzheimer's or kidney disease should consider a whole food plant-based lifestyle. A book by Dean and Ayesha Serzai, MD, "The Alzheimer's Solution", outlines the lifestyle choices that can avoid and sometimes reverse Alzheimer's and various other chronic diseases. There is no money in this solution for Big Pharma or the medical device industry, so sadly it's not likely to become a popular tool in the doctor's toolshed.
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Western medicine and "Big Pharma" do not have a full understanding of the factors involved in the onset/progression of Alzheimers disease and related dementias. Neither do naturopaths, osteopaths, chiropractors, acupuncturists, or scientifically trained dietitians. Scientifically supported recommendations for a balanced diet (with emphasis on avoiding processed foods and including a variety of foods) support guidelines for dietary intake to promote health and decrease risk of development of chronic illnesses. Any other claims are not supported by statistically valid data and analysis/interpretation by independent scientists/MDs, etc. Yes, we all tend to discount what we believe is not important. That does not mean that Western medicine is 'hiding' how to prevent or cure diseases for profit. Health care systems, health insurance, and "Big Pharma" are businesses. So is the 'wholistic healing' field. Buyer, beware.
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I never said or suggested that, "Western medicine is "hiding" how to prevent or cure diseases for profit." In fact, Big Pharma is working furiously for a cure or, better yet for them, a long-term expensive treatment that can somehow pass FDA scrutiny, however dubious. Big Pharma has no interest or profit potential in preventing Alzheimer's. Just like every other chronic disease, the money is in the treatment. I don't believe that there is any prevention for chronic diseases other than evidence-based nutrition and basic health practices, so we agree that the professional groups you mention have no knowledge outside of that to prevent Alzheimer's. A whole foods plant-based diet has been proven to reverse heart disease (see clinical trials by Drs Ornish and Esselstyn). Many the same biological processes are present in both diseases (inflammation, plaques, cholesterol), so without further evidence, this is the only logical prevention and treatment currently available for both.
Finally, you may be confusing "holistic" medicine with whole foods plant-based nutrition. There is virtually no market for whole plant-based foods other than the farmer, garden equipment maker and grocery store. All of the other players are left out, including holistic medicine. There is no financial incentive for anyone in the current system to pursue this form of treatment other than the consumer. That's why it will never be promoted. Big Broccoli doesn't have the same deep pockets as Big Pharma.
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I walked the same path with my mother in her 90s. Diagnosed with rectal cancer, due to other co-morbidities, radiation was our best hope for giving her some quality of life for a bit longer as the tumor was making her incontinent and the dementia had not yet progressed - she cared about having to wear Depends. Yet those drives every morning -often talking about the same signs or buildings we would pass (we are in a city) were similar to yours. I, too, was grateful that the dementia made the cancer easier to bear for her. The dementia finally killed her at 94 in October of 2016. Peace to you on your journey with her.
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Maybe the secret of every healthy adult mother-daughter relationship is forgetting the past and living in the present.
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Your comment is wise and in my own experience true. The past is so passed and forgetting it might often be the biggest of blessings.
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Yes!
In 2000, my mother received her diagnosis of dementia and advanced stage 4 breast cancer simultaneously. The doctor suggested that with treatment, she might have 18 months to live. She lived six years, and my brothers and I often joked that maybe the best treatment was forgetting she had it.
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Thank you. This morning Diana Whitney gave me writing to savor.
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