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Dementia and Buddism
33_3
Veteran
I have been diagnosed with Dementia, possibly Lewy body. I have been referring to myself as a Buddhist since 2013. However not a practitioner. I struggle with meditation, pronunciation of terms, and reading text.
Mattis-Namgyel and Dr. Ben Isbel have YouTube videos that discuss dementia and end-of-life care for Buddhists based on Elizabeth’s experience of caring for her mother, a long-term Buddhist practitioner who currently has dementia. Dying as a Buddhist.
I watched the first video and found it helpful. Trying to write this is pushing me to bring on the headaches and anxiety.
I will come back, my apologies.
George
10
Comments
The thing with dementia is it’s a slow decline, over the course of years, during which you become less and less capable mentally. Living alone won’t be possible beyond a certain point, and it puts increasingly greater demands on your carers as the illness progresses. Your ability to take decisions will also be affected, and legally you will be declared unfit at some stage. It is not a kind illness, depending on your carers’ effort and approach.
My mother spends about 30,000 euros a year on care to help her wash, clothe and clean her husband, which wouldn’t be possible without the social care budget we have here in the Netherlands. We buy in daily care, 2 hours in the morning and 1 hour in the evening, seven days a week because my stepfather needs assistance with clothing himself, getting up, washing and going to bed in the evening, as well as being doubly incontinent. And he is a large man, and she is a small woman, so handling his body requires two people. So that level of care is very necessary.
So there is a financial planning aspect that you can’t ignore. I hear the progression of Lewy Body Dementia is quite different though, you’ll have to let the medical staff advise you on that.
Hi George,
Life's a bitch. I've struggled with mental-health for over a decade. I know how hard and scary it can be sometimes. I want to write something helpful but am conscious that I don't have the required experience, wisdom, or knowledge. But I do have the wish... so here we go anyway!
My grandmother suffered from dementia in her late 90s. In the end she forgot pretty much everything and people generally felt very bad for her. I visited her weekly for years. During these visits I would often ask myself: "is she suffering?". By that question I meant: from her perspective. The honest answer was (and still is): "I don't know".
Alzheimer's is a strange disease. If I were to bet on something, I'd say that it's experienced as worse by others than the patient. This is because we generally identify with our minds. So there is hope - the hope that Alzheimer's is not so bad after all.
My impression was that even while her mind was slowly fading, her body was strong, and her fundamental psyche was OK - behind the illness of the mind. This might be an unorthodox view or overly optimistic. But that's my hunch based on observing my grandmother for years.
I would also like to impress upon you that you are NOT to blame for having Alzheimer's. You are also NOT to blame for the fact that you will probably at some point need help from others. Nor for the fact that you might have some symptoms or weird behaviours.
I am also reminded of the American spiritual teacher Richard Rose. Years (probably decades) before his death he wrote a poem which his students later interpreted as a prediction that he will have Alzheimer's. You can find the poem at the very bottom of this page - "I will take leave of you...". From the accounts I've read, similar to my grandmother, and even much more so, even while his mind was deteriorating, his fundamental psyche still shone bright and was appreciated and admired even by his care-takers.
In closing, my mental-health troubles have taught me a simple lesson: life goes on. So even though it might seem difficult, try not to pity yourself too much and use the time ahead as best you can. I will try to do the same.
Please write here often.
George,
now that we've got the pitty-party out of the way:
If you'd like, tell us some anecdotes, stories, events, insights, views, mishaps, fuckups... from your life so far. Let's try to have some fun
How does that sound?
Today's fuck up 1st. My wife takes me on a drive to get me out of the house. Iowa has several feet of snow and the wildlife struggle to find food, she says "Look at the wild turkey's " I said," Cool ... look at them in their chairs." The laughter between us was insane. Three were sitting in a tree, yet I saw them as tree chairs. The laughter continued for quite a while.
I think (I know my body well) that I am probably beyond the beginning stages.
My wife and I implemented med organization, daily lists, and a time limit on activities. Now I don't always follow them ... that would be too much of a conformity. I am no longer making any major decisions. Kimmy is the power of attorney and health. I have that dreaded living will shit taken care of too. (Medical folks have bugged me for years)
I am probably going to stop driving soon. Currently, I nee to drive to Dr appointments that are close and PT/OT. No music or distraction, 5 miles under, and GPS on the inter drive.
In one of the Dementia Zoom groups I belong to someone asked does anyone get angry?
Some said yes then the was a older (LOL) woman rather relaxed smiling. "Actually I don't get angry anymore, laugh a lot." I immediately chimed in "me too."
I appreciate people feeling sorry for me and extending prayers.
I have moments of scattered depression, but most of the time I am happy. George Harrison taught me a lot since he released All Things Must Pass.
"When challenged you fall to the level of your Training." Military quite
I'm a hopeless optimist, I was heartened by the fact that you could understand that the turkey's weren't actually in chairs. I've had a psychotic break and can fall into believing weird stuff. The biggest help is seeing and questioning the crazy. My grandpa had dementia and in the early days he'd talk about young kids coming to visit him or ants crawling all over the countertop. He never thought to question whether these things were actually real or not.
That is definitely a sign, where you need to start letting go a bit more.
Seems like a sensible step, considering the above.
There are often personality changes that come with this.
Yes. Although really the passing in the end is the grand finale of this life.
We should be VERY careful about offering anything that may be construed as medical advice. We are not doctors.
Did you know that when there are doctors strikes the death rate actually goes down? There are some well documented cases in developed countries across the world.
No, but so what?
Dispensing medical advice, in any form, without a license to do so, if not illegal, is an actionable item in most jurisdictions. Doing so here, can get the site owners in some hot water.
But then, maybe you don't care.....
Actually, it’s only in America that you see these legal disclaimers. The rest of the world doesn’t seem to care so much, in Peru for instance you see shamans giving plenty of medical advice. But I don’t think any of our (Buddhist) readers would see the heart-felt stories given above as ‘medical advice’.
The dhamma practice is that of letting go. That means the letting go of your thoughts, memories, stories, fantasies etc. They are not a reliable refuge since their very nature is impermanence. They are not what you are, truly.
In the case of dementia, it is more the taking away of those things rather than a letting go.
So perhaps one way to practice is to let go of them before they are taken away.
Be well.
@pegembara said:
@pegembara could you explain how? thanks
Have you noticed that dementia patients have no worries or anxieties about their future?
They don't have any regrets about the past as well.
Isn't it one of the "blessings" of dementia?
If we want to also have a similar freedom from stress, we can't just lose our memories and worries at will without resorting to drugs and alcohol, which are only temporary and come to bite us in the end. The only way to do that is by way of mental cultivation, aka practice.
You don't lose your mind, but what you lose is believing that what your mind tells you is true.
To put in simply, you are not the mind, you are not your memories. Your memories live in you! They are impermanent and can be taken away. They are not you nor do they belong to you! They don't define you. If nothing truly belongs to you, then nothing can ever be taken from you! All the rest are just "dream-stuff".
The thing is, those "heartfelt stories" could land you and/or the site owners in a court of law answering for what transpired.
It doesn't really matter what goes on in the rest of the world. The courts, here, wouldn't entertain that argument. This nice, quiet little corner of the Internet, could cease to exist. Buddhist forums, are becoming fewer and fewer. Here, you still have a place where you can post your off-topic entertainments without fear of being canceled. Respect that.
@IdleChater I think you’re exaggerating, considering what’s actually been said… use common sense, what’s written here doesn’t come close to ‘medical advice’, and there’s no need to come down hard on people for an imagined infraction of your local laws.
Look at it this way:
Someone here suggests a course of action to a person suffering from dementia, that includes "letting go". Let's say that person starts trying to "let go" and in so doing, without proper and considered mentoring / care, causes even more psychological problems. Ask your Dutch lawyer how the Dutch courts would deal with such a thing. I don't think you'd get off all that easy.
FWIW…. I also disagree with the ‘letting go’ nature of advice/POV pertaining to this specific issue.
Common sense would mean knowing this is a complicated medical/mental health issue….not a retreat exercise. One also does not ‘lose believing’…. Having experience with both long term/terminal dementia and temporary dementia/psychosis in my loved ones…I assure you there are times they fully believe what the mind is telling them is true….contrary to reality.
ETA… in fact, it’s giving me real “thoughts and prayers” vibes. Got a serious medical issue you’re dealing with??? Just be grateful that it’s a blessing in disguise….or your effort for nirvana/salvation has been given a curve…….. SMH. Cmon guys. That ain’t it!