"End of Life choices" with dementia.
Years ago, before my husband got dementia, he and I talked about what we would like to do if one of us got "dementia". My husband was very clear that he would not want to live when it got bad. I agreed with him, I would not want to either. The problem is, obviously, you lose your power to act on your wish. I would like to hear others' thoughts on this.
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My heart goes out to all of you who live with dementia or care for someone who has it or some other form of mental impairment.
My husband George has Alzheimer's, Lewy Body, vascular dementia and Parkinson's. For the past year, almost every day, he wakes up depressed and says that it'll be his last day.
Until last week, I was unable to get George to talk about his end-of-life wish. He rarely leaves the house, but I convinced him to go on a "date"--to make funeral arrangements. I told him that our culture attaches a stigma to death; but we can reject that notion and choose to view death as a part of life's journey. I told him that we have been fortunate to travel that path together, and that the next phase will be a continuation of that adventure. We don't know who will get there first--but the other one of us will not be far behind.
Most days, I feel as though I am living upside down; and due to sleep deprivation, I don't know whether I am coming or going. Still, I try to find a moment of joy (experience wonderment, awe and gratitude) in each day knowing that our days are not getting any longer.
For those of you whose days on earth are coming towards the end, I hope these poems will comfort you.
“When Death Comes” from New and Selected Poems: Volume One 1992
Mary Oliver
When death comes
like the hungry bear in autumn;
when death comes and takes all the bright coins from his purse
to buy me, and snaps the purse shut;
when death comes
like the measle-pox;
when death comes
like an iceberg between the shoulder blades,
I want to step through the door full of curiosity, wondering:
what is it going to be like, that cottage of darkness?
And therefore I look upon everything
as a brotherhood and a sisterhood,
and I look upon time as no more than an idea,
and I consider eternity as another possibility,
and I think of each life as a flower, as common
as a field daisy, and as singular,
and each name a comfortable music in the mouth,
tending, as all music does, toward silence,
and each body a lion of courage, and something
precious to the earth.
When it’s over, I want to say: all my life
I was a bride married to amazement.
I was the bridegroom, taking the world into my arms.
When it’s over, I don't want to wonder
if I have made of my life something particular, and real.
I don’t want to find myself sighing and frightened,
or full of argument.
I don’t want to end up simply having visited this world.
In Blackwater Woods (excerpt) -- Mary Oliver
To live in this world
you must be able
to do three things:
to love what is mortal;
to hold it
against your bones knowing
your own life depends on it;
and, when the time comes to let it go,
to let it go.
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4 Reactions@georgescraftjr Thank you for your thoughts. I would like to consider death as another path along the way...but not quite able to do that yet!
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1 Reaction@georgescraftjr: Thank you for your offering. I especially liked this: "I convinced him to go on a "date"--to make funeral arrangements. I told him that our culture attaches a stigma to death; but we can reject that notion and choose to view death as a part of life's journey. I told him that we have been fortunate to travel that path together, and that the next phase will be a continuation of that." So timely, for me and my husband. We are in our mid-80s--so the years left are so much fewer, even apart from our medical issues. Thank you again, such a kind post.
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3 Reactions@workwoman
I try not to count how many days we have left and focus instead on how to make the most of each day. Although I have my own medical issues, I try my best to approach caregiving as an act of love not a fulfillment of a duty. Even so, I have my breaking points. I have learned to ask for and accept help.
I hope medical issues and aging will not prevent you and your husband from still enjoying each other.
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