In the british tradition one must not speak ill of the dead. One line of thinking is fear that the dead may come back to defend their honour. Another is respect for those not present to defend themselves.
In other traditions one must take care to speak the truth of the dead, to satisfy them that they have been well-understood and that they have left their own mark.
Mark has been conscientious in his account.
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 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.
I did our laundry this weekend, as I always do. It’s a reassuring ritual, my little demonstration that I can look after myself and care for another. I washed the clothes, the soiled rags and the bedlinens. I folded them all. I put the bedlinens away in the cupboard. I hung up my suits and pants and tucked my underclothes into their drawer. I folded Mark’s t-shirts and paired his socks and left them on the counter for him to put away, as I always do.
But Mark won’t be putting them away. Yesterday morning he got a call that it was time to gather at his mother’s bedside and he left for Holland last night. I haven’t had any news; she may be gone already, or she may pull through yet again. Realising that Mark won’t be here to put his things away is what made me realise that Mark is gone and that I am alone. And I think, someone will be putting away Margrit’s things and thinking the same thing. If not today, then some day not too distant.
[originally transmitted by e-mail December 10, 2006]
Updates for the concerned:
Actually, she isn’t. Well she is just like the rest of us, and probably a little faster, but nothing obviously imminent. She had us frightened with that quick series of episodes of whatever, but it turns out that it was a single very ordinary stroke. Apparently it’s completely normal for new symptoms appear days after the episode as the brain copes with whatever happened to it. After many scans and evaluations, the diagnosis is atherosclerosis. The plaques on the insides of her blood vessels can chip off and bits can travel to her brain and get stuck.
Margrit will be going to live in a local rehab centre for six months to learn to work with her new body; after that, we’ll see.
The Dutch do things a little differently. Birth, death and illness are handled privately, in the home, as much as possible. Doctors do housecalls so that people can die of cancer at home with the comfort of morphine. And only they can call an ambulance. If you’re sick and can’t get to a clinic, you call your doctor. Your doctor visits you, evaluates you and will judge if an ambulance is necessary. This part sounds completely weird to me. Your doctor will show up at your home within five minutes of your phone call with a defibrillator if you have a heart attack? Though I suspect that in practice they often evaluate people over the phone and call ambulances right away, without showing up. So that they double as 911 dispatchers. Personally I would rather call a service organised to be available 24 hours than have to look up the number of my doctor’s clinic at 1:00 in the morning, listen to the recorded message, write down the emergency backup number and call that. And I think this system works best for people who do not live alone.
But I can think of lots of situations where housecalls would be nice.
[originally transmitted by e-mail February 13, 2004]
He’s leaving Friday evening for Holland. Margrit’s had a series of neurological incidents of some sort: they aren’t TIAs exactly (Transient Ischemic Attacks) because she has lasting effects that aren’t transient; they don’t seem to be strokes, because her condition is variable, improving and and worsening from day to day; and it doesn’t seem to be her heart, because they’ve done all the tests. (This is third or fourth hand, of course, and has gone through at least one translation. So I am assuming a certain amount of the broken telephone phenomenon.)
But whatever they are, they are getting worse and more frequent. Up from a yearly fainting spell to attacks of paralysis every other day. Compared to yesterday, today her leg is the same, her arm is worse but her speech is better; last week she was speaking just fine and walking with a cane, and had bought tickets to come visit us in Montreal.
Anyway, Mark is off. Mixed feelings. Not wanting to assume the worst, or to give the impression that he is, or to have his mental image of his mother replaced with a sick person, or to get her so excited she has a heart attack, or to become impatient for her to die and get the suspense over with. But feeling that this is an important time and that he should be there.