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On Caregiving

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CellarDweller:

--- Quote from: Front-Ranger on February 22, 2019, 01:39:35 pm ---Looking back on the years that my mom lived in the same town with me, I would estimate that I spent a large fraction of my time with her trying to hook up, fix, or operate some kind of technology. From computers and TVs to toilet roll holders and all points in between from strings of lights that are motion controlled to light your way to the bathroom and ultrasonic water-spouting whirling self-timing electric toothbrushes. Most of these things were sent by my brother and his wife. Guys in my life and my children were useless to help me manage all this technology. Even a guy my mom hired for $35/hour to teach her how to use her ipad would just say, "What are your questions?" and when she didn't know what to ask, would just put on a You-Tube video.
--- End quote ---

I've had to spend some time with my mom as well, to help her learn how to use the computer to do basic Word functions, saving pics and docs, and then getting her an email  account and Facebook account.

Front-Ranger:
Following is an entry in my diary of my caregiving days. Warning! Some people may find this hard to read. I'm wondering if I should publish this kind of information somewhere. Some of it needs to be said, I feel.


--- Quote ---Saturday morning, I went to try again to pick up a urine sample. Mom wasn’t in her room so I searched all over for the sample bottle but couldn’t find it. She had left out some containers of yogurt so I put them back in the fridge. Several times during the day I tried to call her but she wasn’t answering her phone.

Finally around 2pm I received a call from her phone. It was the lady at the front desk, who said Mom had heard my voice and wondered where I was there at the home. She handed the phone over to Mom and, as I talked to her, I figured out that, by “voice” she meant “ringtone”. She was hearing the phone ring when I called her, but she didn’t know what it was or how to answer it.
I asked mom why she was carrying around 3 remotes and a phone in the pocket below the seat of her walker. She said, “to keep them together.” I tried to explain to her that 2 of the remotes were not needed (and I put them away where hopefully she wouldn’t find them) and that the third one should be used with her TV, and that the phone was separate. Then, I tried to get her to use her phone. I said, Mom, I’m going to call you on your phone and I want you to pick it up, open it, and answer.” I called her, the phone rang, and she just sat there looking at me. I said things like, “I hope Mom picks up her phone”. “Mom, pick it up.” Etc. She just blankly looked at me. I said, “mom, look at your phone! Pick it up!” and she instead looked at her TV remote or the call button necklace around her neck. Finally, I got her to pick up her phone after 4 tries.

I found her room in disarray. I stepped on something in the living room, it turned out to be the spring that goes in her toilet paper dispenser. After a lot of searching I found the other two parts of the dispenser, one on the table, and one in her chair. I put it all back together and put it back in the bathroom with a roll of toilet paper. Towels and washcloths, most of them dirty and wet, were strewn about the place. I put them all in the dirty clothes basket. I put wet wads of toilet paper in the trash. Trash cans were placed in odd places, and one was in the kitchen area, with unusual things in it like placemats and clothing. There were clothing items heaped on it. I also found items of clothing on the closet floor, in all the kitchen cabinets, thrown over chairs, and in the bathroom. So many items of clothing! With great difficulty, I figured out which was dirty and needed to go in the laundry basket and which was clean and needed to be hung up.

Since her TV wasn’t working, I led Mom out into the lobby area outside her door where some TVs have recently been installed. I turned the channel to the Rifleman which Mom said she likes. I told her to sit down on one of the comfy chairs. She started to sit down on top of the remote which was lying on the table in between the comfy chairs. I said, “Mom don’t sit down on the table, that wouldn’t be comfortable!” She said that she would sit down on the cabinet that is just under the TV. I finally got her to sit down on a chair and made sure that she was able to get up again. That’s where I left her. I feel completely exhausted and in despair about her situation, and worry that if I had a gun, I would put it to her head and then my head!
--- End quote ---

serious crayons:
Caregiving is very hard and exhausting and sad. I was lucky that by the time my mom got to that point in her decline she was in assisted living (in Denver) and then a nursing home.

Before that, she spent a couple of years in "independent living," which, it quickly became clear, was not sufficient. She did those kinds of things, too. Some worse.

Nowadays I think they've merged independent and assisted, so the resident can move into a unit and then order whatever services they need, cafeteria style.

As for your last sentence, I'm glad you didn't do that! But a self-made billionaire here did, just a couple of months ago. At least, they found his and his wife's bodies in their bed with a gun between them and assumed that's what had happened. The two were in their late 70s.

It didn't seem like a malicious murder -- the wife had been diagnosed with Alzheimer's, they'd been married since their youth (he'd never traded her in for a trophy wife) and friends described them as "soul mates."


 

brianr:
It must be terrible to look after a person with dementia. My Tuesday walking group has a man with dementia. Trevor is probably a bit younger than me. I usually end up driving him. Last week I only had him. All the other cars were full so it was a very boring 40 minute trip for me, no conversation. About every 10 minutes or less I have to tell him again what we are doing. That I will take him home, he has not left his car anywhere, we will be going for a walk. At Morning Tea, I open his backpack, he has no idea what is in it, explain he will not need to eat the sandwiches, just the biscuits (I let someone else worry about him at lunchtime). We usually go to a cafe on the way home. I explain (several times) that he has money in his wallet. I order his coffee, get him to choose a cake then tell him to pay and sit with those ladies over at that table (he does not recognise them although he walks with them every week), while I order mine. He picked up the salt shaker and asked if it was sugar. Greg, another guy, pointed to the sugar packs. he put one in and asked if that would be enough, Greg suggested he taste his coffee to find out. When we are leaving I have to explain that he has already paid and that I know where he lives (he never recognises me from one week to another) and will take him to his house and usually explain that I drove him in the morning as he wants to know how he got there. Some of the group say we should not take him but I feel sorry for his wife, just one day gets a bit draining.  Fortunately he is quite fit and usually walking up the front. However I silently cheer if his wife sends me an email to say he cannot walk this week.

Front-Ranger:
I know this sounds trite, but I thought I was going through this all alone, and now I know that there are thousands going through it. Thank you, dear friends, for writing about your experiences with caregiving. Brian, you and your group are a Godsend for helping his wife out and I'm sure it does the man good. Maybe it might help if you played music on the drive? That way, he might not be quite as anxious and you would be spared some of the repetitive conversation.

My mother was in assisted living when I wrote that passage. Despite the extra care and expense, I found myself having to go over to her place almost every single day. I woke up every morning wondering what the crisis was going to be that day. It literally drove me to drink, but I had to be ready to jump in my car at any given moment.

Mom really liked to have plenty of cash in her wallet, but we were cautioned not to let her have more than $20 at any time. So, I put about $20 in small bills and then she felt wealthier, but she would often ask me for more. My brother would send her a check for $100 or so. I would put it in her bank account, drawing out small amounts of cash as needed. When she wanted something, we would go shopping together (it took forever!) Since she died, I have literally not. Walked. Into. a. Walgreen's. Ever.

While she was in assisted living, a fellow resident talked her into going to Walmart by taxi, even though it was just a few blocks down the street. She got confused and just started grabbing things off the shelf. She didn't know how to pay when she got to the cash register and just handed the staff person all her money in a wad. Fortunately, the honest person gave her the correct change. I only found out about the trip when I found some cheap random items on the counter and in the trash. What was really sad was that she felt bad about going "off campus" without my knowledge and was very remorseful. I tried to console her but I could have done so much better and I could have made her last years more pleasant. Damn my Scottish reserve!!

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