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Old 01-12-2016, 09:42 PM
ERH ERH started this thread
 
Location: Raleigh-Durham, NC
1,696 posts, read 2,508,895 times
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My Mother Died January 4

I don't post here a lot, but I read the message threads. After providing care for my mother (as back-up for Dad) for the last 12 months, I do admit that I miss it a little. At the end, it was exhausting, overwhelming, and all-consuming, but I miss it. There was a level of nobility in it, for me at least. It was a privilege to care for her, even though it got ugly and messy and time-intensive.

Mom was 75 and battled metastatic lung cancer for almost 4 years. The first brain tumor was removed Jan 14, 2015, followed by 2 weeks of whole-brain radiation; the second one was inoperable/untreatable, discovered in early December. She lived about a month after the doc ended treatment and referred us to hospice.

I'm very sad to say that, despite hospice, she was in some degree of discomfort, then outright pain, in the weeks before she died. She'd had significant bowel issues that we were not able to get under control beginning in mid-December. By the time we realized those issues were more about her body shutting down/dying and not a problem that could be solved, she’d endured quite a bit of discomfort/pain. Sunday afternoon after the hospice nurse confirmed our fears, we broke out the hospice kit (morphine, Ativan, Levsin), and she settled down considerably once the higher doses of morphine began to kick in. She died the following afternoon. My brother doesn't believe she knew she was in pain. I hope that's true.

Once she started the liquid morphine, we did not leave her bedside. We let Dad sleep next to her on the couch as much as we could. Having never been through this before, we had no idea what to expect, except for the hospice literature and the Googling we'd done prior to finding ourselves in this situation. The real-life experience seemed different somehow. There were several instances during the night when her respirations dropped to nearly nothing, and we thought she was leaving us. She battled on, even though we begged her to let go.

By 4am Monday, all trace of my mother's presence was gone. I know that probably doesn't make any sense, and I can't really explain it, but her body literally switched over to autopilot. Around noon, our exhaustion was getting the better of us. My dad, brother and I took turns dozing. One of my brother's friends dropped by while I was dozing, so my brother stepped outside. I dozed off. My dad woke me a few minutes later and told me she was gone.

The next few days passed by like a whirlwind, despite my desire to slow everything down and get it all documented so I don't forget anything. Today, as our schedule returns to its new normal, in which there is no more caregiving, I feel directionless. I know structure will come, but I'm giving myself time to ease into it.

On another note...there is an aspect of active dying no one alerted us to. Levsin was administered to calm her secretions (for our comfort, not ours, it was explained to us), and it worked very effectively until a point. After that, there was a different kind of secretion, a very foamy yet thick froth, that spilled out of her for hours. It was brutal to watch.
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Old 01-13-2016, 12:34 AM
 
1,199 posts, read 920,107 times
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It sounds like your family took such good care of your mother. I'm happy for you that you will be able to hold onto that all your life. My condolences to you and yours.
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Old 01-13-2016, 05:46 AM
 
13,499 posts, read 18,092,190 times
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My condolences to you and your family. I have been in the situation you describe, though without the benefit of hospice support...this was some decades ago. The intensity of the final decline is incredible; and, yes, the sudden change did leave me feeling almost paralyzed for awhile too. Take what time you can to change gears. I found that the old "normal" seemed very strange for awhile.

What you all did for your mother was a priceless gift.
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Old 01-13-2016, 07:19 AM
 
Location: Rural Wisconsin
19,462 posts, read 9,010,114 times
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Thank you so very much for sharing your experience.

Posts like yours are invaluable to those who might be facing the same kind of situation.

Best wishes for your future.
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Old 01-13-2016, 08:45 AM
 
12,022 posts, read 11,479,275 times
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Thanks for posting.

It should be instructive for the people who advocate cutting off personal medical care by the age of 75.

You have some control over the quality of life while you're living, but you have very little control over the quality of life when you're dying (Bowie supposedly had 6 heart attacks in the last year while he was dying from cancer).
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Old 01-13-2016, 08:54 AM
 
3,763 posts, read 12,493,455 times
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I'm very sorry for your loss OP. I'm sure your mother appreciated your care and dedication, and I can only imagine how sad you are that she's now gone.

As far as "finding a new structure" - I'm sure that eventually you'll find your new footing... it's cliche to say it just takes time.. but for most people that turns out to be true.
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Old 01-13-2016, 01:35 PM
 
10,583 posts, read 11,998,743 times
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Yes thanks for posting.
Sorry for your loss, especially like that.
You deserve all the kind words written in these posts.
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Old 01-13-2016, 04:46 PM
 
Location: Southwest Washington State
30,585 posts, read 24,935,403 times
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Quote:
Originally Posted by ERH View Post
My Mother Died January 4

I don't post here a lot, but I read the message threads. After providing care for my mother (as back-up for Dad) for the last 12 months, I do admit that I miss it a little. At the end, it was exhausting, overwhelming, and all-consuming, but I miss it. There was a level of nobility in it, for me at least. It was a privilege to care for her, even though it got ugly and messy and time-intensive.

Mom was 75 and battled metastatic lung cancer for almost 4 years. The first brain tumor was removed Jan 14, 2015, followed by 2 weeks of whole-brain radiation; the second one was inoperable/untreatable, discovered in early December. She lived about a month after the doc ended treatment and referred us to hospice.

I'm very sad to say that, despite hospice, she was in some degree of discomfort, then outright pain, in the weeks before she died. She'd had significant bowel issues that we were not able to get under control beginning in mid-December. By the time we realized those issues were more about her body shutting down/dying and not a problem that could be solved, she’d endured quite a bit of discomfort/pain. Sunday afternoon after the hospice nurse confirmed our fears, we broke out the hospice kit (morphine, Ativan, Levsin), and she settled down considerably once the higher doses of morphine began to kick in. She died the following afternoon. My brother doesn't believe she knew she was in pain. I hope that's true.

Once she started the liquid morphine, we did not leave her bedside. We let Dad sleep next to her on the couch as much as we could. Having never been through this before, we had no idea what to expect, except for the hospice literature and the Googling we'd done prior to finding ourselves in this situation. The real-life experience seemed different somehow. There were several instances during the night when her respirations dropped to nearly nothing, and we thought she was leaving us. She battled on, even though we begged her to let go.

By 4am Monday, all trace of my mother's presence was gone. I know that probably doesn't make any sense, and I can't really explain it, but her body literally switched over to autopilot. Around noon, our exhaustion was getting the better of us. My dad, brother and I took turns dozing. One of my brother's friends dropped by while I was dozing, so my brother stepped outside. I dozed off. My dad woke me a few minutes later and told me she was gone.

The next few days passed by like a whirlwind, despite my desire to slow everything down and get it all documented so I don't forget anything. Today, as our schedule returns to its new normal, in which there is no more caregiving, I feel directionless. I know structure will come, but I'm giving myself time to ease into it.

On another note...there is an aspect of active dying no one alerted us to. Levsin was administered to calm her secretions (for our comfort, not ours, it was explained to us), and it worked very effectively until a point. After that, there was a different kind of secretion, a very foamy yet thick froth, that spilled out of her for hours. It was brutal to watch.
Oh, bless your heart. I am so sorry for your loss. I know you will be glad in future of the care you gave your mother when she was so helpless. Right now, as you said, you need to ease into your routine of now. And of course your father probably needs lots of support as well. I like your documenting things. I know you will be remembering things from her last days for awhile, processing them so to speak. And I want to ask you to be kind to yourself. Do not blame yourself, or burden yourself with regrets, except for mourning. So sorry for your loss.
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Old 01-15-2016, 07:07 AM
 
Location: Wonderland
67,666 posts, read 60,249,386 times
Reputation: 101006
OP, what a beautifully poignant post - thank you for sharing your family's experience.

I have lost my grandmother, and both my inlaws to lingering illnesses leading eventually to hospice care (cancer, COPD/heart, and Alzheimers) and your post paints a very vivid picture of much of what I've observed - that the will to live is intense and that the body and soul of a person doesn't give that gift up easily.

Even with the comforting tools of hospice, I've never seen someone just "slip away" though I guess that does happen.

You and your family gave your mother the precious gift of companionship and loving, consistent care through to the very end. I don't think there was anything else you could do for her, and I am sure she could feel your love surrounding her. What a blessed way to leave this world.

MY condolences to you and your family.
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Old 01-15-2016, 07:25 AM
 
Location: ☀️ SFL (hell for me-wife loves it)
3,671 posts, read 3,515,286 times
Reputation: 12346
Me too OP. My wife's father passed in early June, and she mourned to the point it scared me. A definite Daddy's girl. But about 3 months later, she returned to earth and now says she feels relieved. We went through many years of traumatic care for him...he did not want to let go, and had said so quite decisevly while he was still in his right mind.

It is a harrowing experience. Take from it what you will, and chalk it up to being better prepared in the future for the others that you cherish. They are blessed through your new found knowledge.

And I'd like to add my condolences. I know how hard this is. It will pass. That old saying is true, time heals. Just getting through the fog and haze will get you to the next day..week. It will get better.
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