It's Already Gone On Long Enough

[Ruby Vee]

My mother-in-law had a stroke last week. Details are sketchy -- she's several hundred miles away and the daughter who lives closest, a mammography technician, knows just enough to tantalize my husband and me with some of the medical details, but not enough for us to get the full picture. She had either a right CVA or a left -- Rosita isn't sure -- and has either left hemiparesis or left -- again, Rosita isn't clear. What is clear is that she had a diminished level of consciousness and wasn't able to swallow.

Did we think she should give permission for a feeding tube?

Mamita is 89 years old. She's been institutionalized with dementia for nine years. No matter what we do or don't do, she isn't going to get better, her dementia continues to progress, and she hates living in the nursing home. When she first went there, she wore an ankle monitor because she kept trying to leave. She was in the memory care unit because Hurricane Katrina and the disaster that was New Orleans snatched away what remained of her clarity and functionality, then the Sheriff's department put her on a commercial flight and sent her off to live with her daughter in New England.

What else were they going to do with her?

She couldn't be left alone because she'd immediately try to go back to her house -- under water at the time. And letting her wander among people wasn't safe -- she tended to attack anyone who annoyed her. Mamita was always easily annoyed.

Nine years in a place she hated, and my first thought was that the stroke might offer her a way out.

If you ask anyone whether they'd like to die with dignity, or whether they'd like to be kept alive on machines even if there's no hope of recovery, no one opts for the machines. At least, they don't if you give them some clear idea of what you're asking and ask them before they get to the point of being awake, afraid to die and facing the point where the only hope of keeping them alive IS the machines.

Why, then, do we even offer the feeding tube to the family of an 89 year old patient institutionalized with dementia for nearly a decade and without any hope of recovering?

I'm not sure how serious the stroke turned out to be -- she has hemiparesis. Even if there was a chance of recovering from the stroke, she won't recover from the dementia, and the dementia makes it all but impossible for her to recover from the stroke.

How do you get her to do the exercises that will strengthen her, how do you teach her how to use a spoon or dress herself or use the toilet with one hand?

The stroke took away, and the dementia makes it impossible to get it back.

Mamita got the feeding tube. Her middle daughter, the one who lives farthest away and has always wanted the least to do with her insisted that she couldn't live the rest of her life knowing that "Mamma starved to death."

Why is it always the ones who live farthest away, who have the least to do with the patient while they are able to interact and who know the least about the situation who always draw the line in the sand and insist upon "doing everything"?

Why is it that they don't listen to the son who knows?

This isn't "doing everything." It's just prolonging her death.

It's already gone on long enough.

[duskyjewel]

Egad, poppycat, yeah, hospital based hospice just doesn't seem like an idea that's going to work. The paradigm is so radically different, I think you have to get out of the building to really implement it.

[Thimbalina]

Thank you. What I was trying to convey that I don't think I did very well was that even though my dad had 'the perfect at home, most peaceful death you could possibly ever have'… I still (and probably because I'm a nurse) think… 'if we'd just gotten him to a doctor and gotten him on antibiotics, or started an IV and given him some fluids… or or or or or…' I wouldn't have ever called an ambulance. But you're right, at that point the car ride would've killed him. It would have been way too much for him to handle at that point. So what I'm saying is that death of a parent is such an emotional issue that even with the best situation it's just plain hard to let your parent go. It's like they should ALWAYS be there! and then they aren't. I'm still to this day conflicted when what I should be is happy that he died peacefully.

Yeah, he had end stage respiratory failure and about 6 months earlier I had taken him to the doctor and we ended up in urgent care. They finally just came in and turned off the sat monitor because his norm was to drop in to the 80's if he turned on a certain side. It sucked watching him gasp for breath for so long… He had COPD but not from smoking, he had TB at 5 and was in a sanitarium for a few years before they had drugs to treat it. Once it ate through an artery they hacked him open and took out a lobe and then performed therapeutic atelectasis as was the practice back then. He was then a test subject for streptomycin??? I think it was… which caused him to have hearing loss as his eardrum ruptured. That was when he was 15. Once he recovered enough he went to junior college to finish high school. He never finished and guess what? I had no idea my entire life he never finished high school until the year before he died. He accidentally let it slip. !!! lol. He was always reading and was very self educated. He had very interesting mixes of friends (a judge, a radiologist) Anyways, he was alert and oriented until about 2-3 days before he died and then he was delirious. It was horrible to watch. I am very thankful for the hospice nurses though because they did what I couldn't do and they walked me through it.

so on the one hand I'm super proud of my dad for having the gumption to live and die exactly the way he wanted to. It is still NOT easy to allow it to happen… It is just one of those things we cannot control. Death. (dammit)

Yes, hospice is a special calling. Bless you for doing it.

[maelstrom143]

Very well said Ruby. All I can say for those who want everything done is may it be done to them when their time comes.

[jackielee]

This is another story about how absolutely important advance directives and healthcare powers of attorney are for EVERYONE. My husband and I made ours out when I was 33 and he was 52 and have revised them as needed ever since. We are all going to die at some point, and why leave these heartrending decisions up to anyone else?

[smowris]

Buried my Mother in Law a few days ago, somewhat similar story but had to back off an overzealous MD in the ER...Hospitals are just not the place to be when you are dying. I felt the whole process was so dehumanizing. She was clearly "Bed 444" not the wife, mother and healthcare provider she was before age and Alzheimers hit. We give lip service to death with dignity but my experiences say something else...Where do we start to resolve this dilemma?