Archive | March 2018

Bad Days & Batty Ideas

The last couple of days haven’t been good days for Mom. Yesterday when I arrived mid-afternoon, as arranged, to take her to get her hair done, she was just starting to eat her lunch. The staff explained that she was having so much pain in her knee that she’d refused to get up from her recliner to eat or even go to the bathroom. I knew she wasn’t going to be up to the hair salon, so I just sat with her while she ate her lunch. Before I left, I leaned down behind her wheelchair and hugged her. She gripped my arms tightly and said softly, “That feels good. Comforting… Reassuring.” I kissed her forehead and told her that I love her and I’d see her tomorrow.

We did make it to the hair salon today, but it was a struggle all the way. Her legs were so weak, it took both caregivers lifting under her arms to transfer her from wheelchair to car. When we got to the salon, she and I struggled to get her out of the car. Usually she can push up with her arms and get to standing, but today she needed to be lifted. Once she had collapsed into the wheelchair, she looked up at me and said, “I’m a mess.” I shrugged that off with a smile, but I hate to hear her talk like that. It’s a strong indicator that she’s not feeling like herself.  The hairstylist helped me get her from wheelchair to shampoo chair; and to save Mom the extra strain on her legs, she let her stay in the wheelchair while she cut her hair and rolled it up on the rollers. Mom was practically nodding off in the chair, and by the time we got back to the car, she wasn’t sure if she could get up again. She was almost a dead weight, and when I managed to haul her to her feet, she just leaned her head against my chest and seemed to be having trouble turning around. She barely got her butt onto the edge of the car seat, but we made it.

I’m worried about her today, wondering if it’s the neurological issues progressing that is causing these mobility issues or if there’s a systemic issue making her so weak. Or both. Sigh. I’m hoping she’ll be up for going to church on Easter Sunday, which was the whole reason I put her through the trip to the salon.

Yesterday while Mom was in the bathroom, I was talking to Jenny, one of the other residents who also has dementia. “Do you know who came up with this batty idea?” she asked me, out of the blue. What batty idea is that, Jenny? “To cut off our arms and legs!” she replied, indignant. Yes, I agreed, that does sound like a batty idea. I wondered where it had come from, but then she continued… “I try to use my arms to push myself up, but they don’t want me to do that. They don’t want us to use our arms and legs. Your mother, too. Our arms and legs work just fine!” Well, I commented, my mom’s legs aren’t working too well right now…

I’ve been thinking about this today, wondering if the staff really are “cutting off [the use of] their arms and legs” by insisting on lifting the residents instead of letting them push themselves up and just giving them a boost as needed.  I know they’re trying to ensure  safety and avoid falls, but it’s so discouraging to see my mom losing the use of her legs. And her arms have always been strong, even when she had PT in the hospital. Use it or lose it, as they say. But I don’t know what to do about that.

 

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Difficult Conversations

“I don’t know what I’d do if I didn’t have you,” she said to me yesterday. “I think I’d just give up.” This is the second time in recent weeks that she’s used the phrase “give up.” That’s new for her. I don’t like to hear her talk like that.

Today we saw the kidney specialist and had another difficult conversation. Her kidney function is down to 13% and it’s time to talk about whether or not she will choose dialysis when the time comes. The doctor explained that she would only be a candidate for dialysis at a dialysis center, and that she would likely have to go three times a week to be hooked up to a machine for three hours each visit.  He said that it’s not painful, just uncomfortable, and that the worst side effect most of his patients have from it is fatigue, while some actually feel better and more energetic once they’re on dialysis. He went on to explain that she doesn’t need dialysis YET, but the reason he brings it up now is because she would need surgery a couple of months prior to starting dialysis, to make a fistula in her arm for the access site.

Mom shook her head firmly and said “I’ll just go home to Heaven.”

I squeezed her hand and told her she doesn’t have to decide anything now. We’re not there yet. “No,” the doctor echoed, “We’re not there yet. And there’s a lot to consider.”

Yeah. Like how in the world I would GET her to a dialysis center three times a week, for starters. I’ve already been out of work for almost seven months, and I have to go back to work as soon as possible. Once I start a new job, it will likely be quite some time before I can manage even half a day off ONCE a week.

But the bigger question is, how much would dialysis help? I’m only just starting to research this, but my initial findings on the internet tell me that there are pretty serious risks for patients over the age of 80. She’ll be 90 in in a little less than three months, and with all her other health conditions, I’m not even sure if she’s a good candidate for dialysis at all. But once it’s determined that her kidneys can’t function without dialysis, she may only live a few months.

I’m not ready for this.

I’ll close this with some good news. The two Procrit injections she received bumped her hemoglobin count up from 7.9 to 9.6, so the doctor says she’ll only need them once a month at most.