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When do you stop searching for a miracle and just let them go?
After two years of emotional and physicsl upheaval since diagnosis, I had just gotten resigned to living our lives as best we could until the end. Then a friend reccomended hyperbaric therapy for dementia which is showing great promise for improvement and after researching, I made an appointment with an upbeat heart.
Today I had lunch with an old classmate who has been caring for her dementia husband for five years and she told me that they had been offered treatment that might improve his life and give him an extra 6 months. They decided against the treatment saying why prolong the inevetible? Lord, that question has now rocked my inner soul and if all I can get is a prolongation of worsening, where do we go from here?
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At the present time, I am unaware of any treatment that has shown much promise in altering the course of this awful disease. My guess is the we are most likely to eventually find something that might prevent the disease (???genetic modification) or prevent further progression (long term) and/or reverse EARLY changes of A.D. It would have to be some kind of real miracle to reverse the brain damage in advanced disease. For myself, I've told my family to make me comfortable and treat me with dignity if I have advanced dementia. There is a time to let go. I have an ex-wife who has stage IV breast cancer, and her response is, We all have an expiration date. I just want to die with as much dignity and comfort as possible.
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9 ReactionsMy brother with dementia was going downhill for 6-8 years. The last 2 he no longer responded to my voice, and my visits were more for the wonderful staff than for him. During last 5 months he was hospitalized a few times for aspiration pneumonia (I said no to feeding tube as my research said doesn't prevent aspiration) I finally filled out MOLST form with doctor (medical order of life sustaining treatment) as I was his legal guardian. Not an easy process, the papers was wet with my tears.
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7 ReactionsI agree. Prolonging a life that is so limited, painful and disturbed makes no sense. My dear mother used to say “If my life is that way, push me off the cliff!” I want that for myself and as a caregiver for my husband who has Parkinson’s with dementia I will follow that. Not the pushing part, but allowing life to take its course. None of us gets out of here alive. Letting go with grace and gratitude, decency and dignity is my hope and prayer.❤️
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9 ReactionsI read a story which told of a remote Japanese village, where they could not afford to sustain the elderly at the expense of the younger people.
Anyone at 60 (70?) was to ascend the frozen snow covered mountain, sit there and freeze to death. It was an honor. Obasute.
The story tells of a son walking (carrying) his mother up the mountain.
I understand it, but it still makes me so sad. It's called a legend. I hope that's all it is.
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2 ReactionsI heard a similar story about Eskimos putting their elders (that they could no longer care for) on an ice floe, then they just float away from the village and out to sea. 😔
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