Friday, January 28, 2011

The Pain of Too Much Love

It pains me greatly when I hear family members insist on their loved one being treated a certain way that may not be in that person's best interest. I have seen this happen a lot either at hospice or in long term elder care communities. 

Once, I watched a granddaughter shake her dying grandmother out of her quiet repose, pinching her cheeks, and yelling in her ears to please respond. Soon, the mother arrived and did the same. Hours ago, I had been sitting with the old woman, breathing with her and holding her hand, as she lied in her bed very peacefully. Mother and granddaughter eventually decided to pull their loved one out of hospice so that she could continue to receive more aggressive cancer treatment in the hospital. The woman died a few weeks later. 

Another time, a daughter dictated a grueling care regiment for her frail mother that left the ninety year old woman too exhausted and depressed to eat or participate in her favorite activities. I wondered why wouldn't the daughter want to listen to the staff's recommendations? Why impose daily showers? Why demand more medications, with the unfortunate consequence of adverse side effects? Why obsess over the frequency of her mother's bowel movements? Why insist on a rigid nap schedule? Why? 

In each case, well intentioned family members whose idea of love got in the way of their loved one's peace and well being . . . In each case, a person too powerless to voice her own needs, who got subjected to unnecessary suffering in the name of love. 

It would be too easy to blame the families. Better instead, try to educate them on the real needs of their loved one. And at a minimum, hold them in one's heart, with compassion and loving kindness for their own suffering. 

13 comments:

  1. fear of death and a failure to respond to person before them. that's what i see in those cases. that's what i've seen in my own family.

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  2. Families....can't live with them .....and can't live without them.

    Best to do a detailed end of life directive....so when you can't speak it is proof of how you want to be treated.

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  3. Wow Marguerite, how very poignant.
    I relate to this on a very personal level and your post is very timely for me.
    Thank you so much.
    Metta
    David

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  4. Nathan, yes, and hence the need for more widespread education about this, in hospitals, in elder care communities, in hospices, in senior centers, . . .

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  5. Was Once, yes, also 5 Wishes:

    http://www.agingwithdignity.org/five-wishes.php

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  6. David, much metta to you! It seems that you can use it right now . . .

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  7. In my own situation, my youngest is handicapped and have witnessed first hand parents not accept a child's handicap, and press on as if sheer will power will magically heal their child. Literally imagine a mother screaming at her child to not be lazy and make progress !. I used to be a Drill Sergeant and it made me cringe. Early on both my wife and I decided not to be our daughter's physiotherapist and just be parents. To enjoy our time with her and instill that our time together is not work but family time. Does this mean she could have progressed faster ? Perhaps, perhaps not but for us the time we have together laughing makes up for any delays. Besides what is time anyway?

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  8. Beautiful BD! Your daughter is very fortunate to have parents such as you and her mom . . .

    The secret ingredient is really about being conscious. Hence the importance of mindfulness practice and other inner work. Learning to discern our own needs from the other person's needs, cultivating our empathy muscle, and learning the way of true love.

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  9. Thank you ...I will forward to family.

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  10. Yes, I learned about this during my Zen Hospice training. Thank you for passing it on.

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  11. (1) Culture of Thoughtlessness
    I have raised several dogs--or perhaps they raised me :-)
    The only model I had for raising dogs was my father -- who would hit our dog. It hit my first dog for a while until I saw through my behavior. I still regret this first hits. I am not sure what broke the cycle. But fortunately my kids did not know me when I still hit -- our dogs (3 now and one prior) have been raised without hitting.

    (2) Question
    You volunteer at "Zen" Hospice. Do you have experiences at other hospices? Do you see a difference in family behavior between hospices, if you do?

    (3) Religious Deaths
    I think I read last year that "they found" religious folks (not sure who they looked at) spend more on the elderly in heroic end-of-life interventions. I'd love your take on that sometime.

    (4) My parents
    My father died in a hospice and my mother in a hospital -- both being there several months at the end. And I was with both of them during that time. My brothers and I swore to try and arrange hospice for each other when the time come and to listen to the advice of staff. Our experience there as a family was "wonderful" for such a time.

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  12. Thank you for all your sharing, Sabio. So much wisdom in all your points!

    Regarding your first point, I believe we all have displayed thoughtlessness at various times throughout our lives, simply as a result of our imperfect human nature, and unconsciousness. I certainly have, and it would be easy to go in a place of guilt, and remorse. Of course, that is not helpful, as it keeps one enslaved to the past. Instead, I choose to see these prior instances as teaching moments, and also a source of gratitude for the beauty of mindfulness practice. "I screwed up, and I am very sorry, and I ask those whom I may have hurt for forgiveness, and I move on and commit to a path lit with mindfulness and wise reflection."

    As to you second point, my main experience with hospice has been with Zen Hospice. My hunch is family behavior probably does not change much between different hospices. The examples I shared have more to do with the universal human experience of being afraid of sickness, old age and death, as pointed out by Nathan in his comment, and also a lack of consciousness of one self and the other person.

    Regarding differences in people's responses to end of life care based on their religious leanings, I do not know.

    Last, I am glad you had positive experiences while your father was in hospice care. At Zen Hospice, I have witnessed so many beautiful stories of love and life, and dying in community. The word needs to get out more about hospice as the better alternative to invasive procedures and the coldness of end of life in a sterile hospital setting.

    Thank you for the depth and thoroughness of your reflections.

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