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Dementia and Buddism

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

JeroenhowKotishkaFosdickShoshin1lobstermarcitkopegembararocalaDagobahZen

Comments

  • 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.

    Vastmind33_3DagobahZen
  • personperson Don't believe everything you think The liminal space Veteran

    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.

    33_3lobstermarcitkoDagobahZen
  • JeroenJeroen Luminous beings are we, not this crude matter Netherlands Veteran

    @33_3 said:
    Three were sitting in a tree, yet I saw them as tree chairs.

    That is definitely a sign, where you need to start letting go a bit more.

    I am probably going to stop driving soon.

    Seems like a sensible step, considering the above.

    "Actually I don't get angry anymore, laugh a lot.”

    There are often personality changes that come with this.

    All Things Must Pass.

    Yes. Although really the passing in the end is the grand finale of this life.

    33_3
  • IdleChaterIdleChater USA Veteran

    We should be VERY careful about offering anything that may be construed as medical advice. We are not doctors.

    JeroenKotishkalobster
  • JeroenJeroen Luminous beings are we, not this crude matter Netherlands Veteran
    edited January 22

    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.

  • IdleChaterIdleChater USA Veteran
    edited January 22

    @Jeroen said:
    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.....

  • JeroenJeroen Luminous beings are we, not this crude matter Netherlands Veteran

    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’.

  • 33_333_3 Veteran

    @pegembara said:

    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 could you explain how? thanks

  • pegembarapegembara Veteran
    edited January 29

    @33_3 said:
    @pegembara said:

    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 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".

    lobster
  • IdleChaterIdleChater USA Veteran

    @Jeroen said:
    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 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.

  • JeroenJeroen Luminous beings are we, not this crude matter Netherlands Veteran

    @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.

  • IdleChaterIdleChater USA Veteran

    @Jeroen said:
    @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.

    VastmindJeroen
  • VastmindVastmind Memphis, TN Veteran
    edited January 29

    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!

    IdleChater
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