Monday, December 10th, 2007

End of life issues.

Filed under: Margrit — alison @ 08:03

Mark is in Holland for his annual visit. Saturday he visited his mother. She had been in an assisted-living facility where she needed just a little more care than they could offer. They took away her call button because she used it too much, so when she had a heart attack they didn’t find her until it was almost too late. That was last year; she wasn’t expected to make it then, so Mark flew to Holland to see her in the hospital. She did make it though, and was discharged to a sort of intermediate holding-pen until she could be placed in an extended-care facility.

So, this Saturday Margrit was still in the intermediate facility, no place in an extended-care facility that could meet her needs having been found in the intervening year. She was oriented, clearly not demented but not particularly alert either, speaking only when spoken to. Mark thought it was the effect of all the medication she is on to relieve the pain in her leg. Strokes have paralyzed her on one side. She wears diapers not because she’s incontinent but because there aren’t enough staff to transfer her to the toilet regularly, and she’s heavy enough and paralyzed enough that transfers are difficult. When Mark was there, staff got her out of bed at noon and transferred her to her wheelchair. She has pressure sores from inadequate movement and cushioning. (After the pressure sores developed they ordered her a fancy air mattress that inflates in different spots every ten seconds, but once pressure sores have developed they never really heal. They also ordered her a special foam cushion for her wheelchair but it hasn’t arrived yet.) She eats mush and breathes supplementary oxygen.

Sunday night Mark got a call that she was having more trouble breathing so the facility was “pulling the plug” (? she wasn’t on life support to begin with) and putting her on increased morphine and that the family should gather round. Mark rushed over to discover that his mother was still getting oxygen and that she didn’t have the famous morphine drip, just that her oral morphine prescription had been increased. On the other hand all her other medications have apparently been discontinued, meaning that she was much more alert than Mark has seen her in years. We aren’t quite sure what to think. If the problem is heart failure leading to her lungs filling up with fluid (we don’t know that, there was no doctor at the facility to talk to when Mark was there) then presumably they are withdrawing heart stimulants and her lungs will fill up quickly today.

Or not. This is the third time Mark has been called to a final bedside vigil. The difference this time is that the other two times she went to the hospital. This time she refused to go.

I don’t want to spend the last years of my life oriented but too drugged to have a conversation, continent but shitting my diapers because there’s nobody to help me to the can, my heart problems treated with medication but allowed to develop pressure sores. I just don’t.

Margrit doesn’t either. She doesn’t seem bitter, fortunately.

(I asked Mark to steal the medication in her room while he’s there but he says there isn’t any. They say ODing on blood pressure medication will do it, which shouldn’t be too hard to come by when I need it.)

In the meantime, Mark has gone back to Rotterdam to collect his stuff so he can spend the next few days with his mother and family.

This is so hard.

Amendment: Since speaking with Mark again I have updated the second paragraph to reflect that Margrit does have her own, fitted wheelchair and that once she developed pressure sores she got a really cool air mattress. Also the fourth to add that Margrit was the one to say she didn’t want to go to the hospital this time.


  1. Awful. Please tell Mark my thoughts are with him.

    Comment by Vila H. — Monday, December 10th, 2007 @ 14:23

  2. Me, too. I can’t believe that such things are happening…

    Comment by Alston — Monday, December 10th, 2007 @ 16:24

  3. Oh, I am so sorry, Marc, Alison and Margrit, who I have never met. I went through the final days of my grandmother, and it too was not easy or simple. So hard to know, so hard to make any decisions, or do anything. One does begin to see the sense of the Inuit elders asking to be left behind on the ice and snow when they decided it was their time to go. Seems to have so much more dignity. I wish you the best.

    Comment by Leanne — Monday, December 10th, 2007 @ 22:02

  4. These are times I am shamed to be a physician. My research university spends millions and millions of dollars “investigating” while, here, in the richest country in the world, patients suffer from the same neglect and lack of minimal equipment to maintain their basic comfort. I am very sorry that death is the only “feasible” solution.

    Comment by foofoo5 — Monday, December 10th, 2007 @ 23:33

  5. Mark and Alison, my heart is with you (and of course with Margrit, though I only know her through the two of you). I know you are doing what you can to manage the inevitable. How does it get so complicated when quality of life should inform every decision? I am glad that you and others with similar vision will be there for me, if I am unable to act on my own. Looking forward to seeing you.

    Comment by Patrick — Tuesday, December 11th, 2007 @ 04:06

  6. Thanks, all. Mark feels that everyone is doing what they can for his mother and with respect. It’s just that letting go of life is a long-drawn-out, ugly, crappy process as you lose the ability to fully participate in it.

    Comment by alison — Tuesday, December 11th, 2007 @ 06:35

  7. I am sorry for these times, Marc and Alison. To watch a loved one pass away is difficult. To watch a loved one deteriorate is excruciating and is not for the faint-hearted.

    Comment by Mansa — Tuesday, December 11th, 2007 @ 09:44

  8. I’m sorry, Marc & Allison. We’ll be thinking of you. And wishing for Marc’s mom less pain during her remaining time.

    Comment by ina — Tuesday, December 11th, 2007 @ 11:07

  9. Je viens moi-même de perdre mon père. Et je peux assez bien imaginer ce que Mark peut ressentir. Mark est un homme extrêmement gentil, je lui aurait souhaité une fin d’année plus réjouissante, lui qui sur son blogue déjà exprimait une sorte de lassitude. Je ne sais pas si je peux citer le passage qui m’a marqué : « My life is pretty boring at the moment, I’m not progressing much with the projects that I should have finished some time ago, there are some health issues but for the rest it’s pretty much the same as it was last year or the year before that ». Mon père est mort tout doucement, sans souffrir. C’est ce que je souhaite à Margrit autant que possible. C’est ce que je nous souhaite à tous et toutes. Mes sympathies et mon amitié sincère à Mark.

    Comment by Luc Séguin — Tuesday, December 11th, 2007 @ 16:25

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