On Caregiving

[Jeff Wrangler]

Thank you so much for sharing that, Lee! I haven't read it yet but will, and may even write about the topic for the paper.

In my other job as a copywriter, among my other duties is writing brochures for patients about medical devices. Most of them are pretty big-deal devices for serious conditions; implanting them may involving brain surgery or heart surgery. So the brochures almost always suggest lining up a caregiver, having that person go to doctors appointments with you and help you while you're recovering. They also often include instructions for the caregiver on how to help the patient.

I often say, what if this person doesn't have a caregiver? What if s/he has no spouse, either no children or they live somewhere else, no really close friends they could impose upon to that degree? The person giving me the assignment, generally someone in their 30s, will kind of shrug, like, well, pretty much everyone has somebody. But I don't think that's true for many, many people.

I agree, of course. And even though I have friends whom I'm sure would be willing to help, they have their own lives with their own issues. Who knows what might be going on with them when I might need help? (That might sound selfish, but that's sort of my point; you hate to ask/impose.)

[Front-Ranger]

Sadly, you are right, friend. At the rehab center where I go twice a day, there aren't many people like me. Maybe two or three other older ladies, (we caregivers are often daughters). While I'm helping my mom eat in the dining room, some ancient person taps me on the arm and will ask me to help them "get out". Or, they will silently implore with their eyes. It's heartbreaking, really. I've learned to harden my heart and concentrate as much as possible on Mom.

[CellarDweller]

Very interesting read,  Lee.   Thanks for sharing!

[CellarDweller]

But, my goodness, "unbefriended" is a terrible thing to call people. Like Scrooge before he saw the light.

I get your point,  but I must admit, your description made me laugh.

[brianr]

I have that problem. I have a sister but she lives 3000 miles away in Sydney, Australia (and is 83). I do have lots of friends (mainly women). However there is one guy, Jim, married with 3 adult children and 8 grandchildren who all live in Australia. We became friends about 4 years ago and he helps me organise a walking group. We have never discussed my sexual orientation but I did hear him talking to others at the time SSM was passed in NZ and he said something like "Why not, it has been going on for years and years.' He must know about me as all the women do (and women talk   )

Anyway I have an inguinal hernia and have been to the hospital twice but they always say it is not bad enough to operate but they also say it is day surgery (my father was in hospital for about 10 days but that was in the 1950's) and I must have someone stay with me that night. I joked to Jim that I nearly put him in for the job and he said "of course I will".  Last year I had eye cataract surgery and again the hospital said, you must have someone stay the night. However my surgeon said not necessary (it is not a full anaesthetic) but the hospital must not know. I could not therefore ask them to call a taxi. However Jim came and picked me up (he had to wait nearly an hour as my op was delayed). We went home and he sat for an hour over a coffee then rang me again about 7pm to see i was ok. My sister sent him a card of thanks.

However an occasional thing like that is quite different to becoming permanently dependent which worries me no end.

[Jeff Wrangler]

Sadly, you are right, friend. At the rehab center where I go twice a day, there aren't many people like me. Maybe two or three other older ladies, (we caregivers are often daughters). While I'm helping my mom eat in the dining room, some ancient person taps me on the arm and will ask me to help them "get out". Or, they will silently implore with their eyes. It's heartbreaking, really. I've learned to harden my heart and concentrate as much as possible on Mom.

You mean, they expect you to come and feed your mother/help her to eat?

It wasn't that way where my grandmother was.

[Front-Ranger]

Where your grandmother was, did they have a staff person to sit with each resident to help them eat? That could be a very expensive proposition! If I didn't come over to help my mom, somebody would probably help her with a few bites as they were going past, but she would pretty much be on her own. I've watched others at the table struggling, some who have hand injuries but were still trying to eat by themselves. Occasionally, I've arrived late and a staff person has cut up her meat for her, but she has to spear it and put it in her mouth herself.

[Jeff Wrangler]

Where your grandmother was, did they have a staff person to sit with each resident to help them eat?

My grandmother was able to feed herself until her Alzheimer disease advanced to a critical state. I can't say how exactly things were accomplished, but I do know my dad was not expected to show up to feed her.

My grandmother--and my grandfather until he died--was in a community affiliated with the Mennonite Church. She was always treated with respect and compassion, and she certainly did not suffer from lack of nutrition.

[Front-Ranger]

Mom was so much better today. It's clear that the Norco painkiller does not agree with her. I left several messages with her doctor and social worker, none of which were returned. I will persist tomorrow and make sure she doesn't receive the Norco again. Another name for it is Vicodin.

I came over to help her eat at lunch and dinner but it was mainly to keep her company. She was able to feed herself. I encouraged her to eat all she could, and I think she ate more because I was there. Is that so bad? My daughter urges me to hire someone to make these trips. My friends urge me to abandon her to the care/no care/maybe care of the staff.

Can I tell you a secret? (That's what blogs are for, aren't they?) I'm actually enjoying this time, to focus on what is really important to me. And that is, my mother and my work. I would add my garden, but it's been raining so much that I haven't been able to get out into my garden, and it's been self-sustaining. I discovered that I've been spreading myself too thin, trying to stay in touch with all my friends, my boyfriend, church, my volunteer activities, etc. It's a relief to say to everybody, sorry, can't get together, my mom needs me.

[brianr]

Whenever my mother was in the public hospital, my sister went each day for breakfast and lunch and I tried to be there for dinner. I was still working part time and lived 80km (a 2 hour train journey away.) The nurses were too busy to do anything more than put the meals in front of the patients. I saw other patients trying to feed themselves and it was heart breaking. Mum was almost blind and quite deaf but her mind was better than mine. I would set up the table next to the bed with her watch, glasses,  water etc, so she could reach them in the night, before I left to catch the train. However I did not take her to the toilet (not until the last week or so). Mum was on oxygen and so getting around was a chore. One night I asked a nurse to take her to the toilet as I wanted to catch my train (only went every hour). She sang out down the corridor to another nurse. "Come and take his mother to the toilet , he wants to catch the train" It was so embarrassing.

For most of the time we were able to keep Mum at home in her apartment on the same floor as my sister. She rang early (2-3am)  in the morning and my sister did not answer but ran down the corridor to take her to the toilet. This went on for many months. My sister got all her meals and I went down 2 or 3 times per week to give her a break. We did have a carer (paid by the government) in for a few hours one afternoon a week so my sister could go shopping especially if I was working full time.

Where my sister lives, the lady in the apartment underneath is a close friend. Her husband (87) has been in a wheelchair for several years. He is now at the end, apparently no longer conscious. The government  pays for a carer to be with him at night but as she is not a qualified nurse she has to wake the wife every 4 hours to give him morphine (I did that for my mother for her last week.) It is just dragging on and on. It is ridiculous, both my sister and I campaign for euthanasiia. There is a private members bill coming before the NZ parliament soon but the do gooders are kicking up a stink.