Yesterday an 85 year old friends said, “I am a little bit older than you” (topic was use of adding machines). Um yea, 24 year older.
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Just got home from mom’s. The past 24 hours were rough, but we had a great time the rest of the week.
For the first time, last night and then this morning, I couldn’t manage to get her in her wheelchair alone. I had to get dh to help me per her request, which is so sad to me. She’s always been so vain, and it must take a lot for her to admit that she can’t help me get her into her chair and that I need to enlist dh. The truth is that she has the strength if she’d cooperate with me. I’m taller and stronger so I have leverage, but she’s so afraid that she’s going to fall that she gets paralyzed. I can’t get her to do a blind 180 to get her in the chair from the potty and to trust me that when I say all you need to do is bend your knees and you’ll be safely in the seat. Instead, last night she locked her knees and because she’s in socks she slid straight down. I could’ve muscled her into the chair, I think, but she was terrified so instead I let her softly land on the ground propped up next to the bed. I got dh to help me get her in. She makes this quite irritating noise like she’s hurting but she’s not, she’s scared. (I know this because she made it when dh was getting her up a curb and there’s no way she was hurting at all then, but it did surprise her so she made this noise.)
Mom had ended up on the floor with everyone but me until yesterday. I don’t know when they will admit that they can’t do it on their own. I told my sister that I can’t make them get help . 
My fear is that they will start keeping her in bed all day.
In worse news, she can no longer use her fork to feed herself. She does well enough with a little half-sandwich, but the eggs and potatoes and sausage appear to be a thing of the past. I wish I understood whether it’s weakness in her arms that keeps her from doing things or whether she’s forgetting how to do these things.
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I’m so sorry.
Has she had a stroke?
@Youdon_tsay might not be relevant but when my mother started having trouble with feeding herself, an OT was helpful. The OT had some gadgets. As I said, might not fit this situation but an idea.
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There are belts to help with transfer. Her doctor should be able to recommend a good transfer belt for her needs. There are different types.
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I wondered that, and one nurse hypothesized that, but she’s on hospice so even if she had a mild stroke i don’t think they would do anything.
She already uses a special fork, which has been great for the past month or two, but now she stabs her food and brings her forearm up, but she won’t lift her elbow off the armrest. Now, she’s bending her head forward to meet the food. She will lift her coffee cup, slowly, to her mouth, so I know that she CAN lift her arms more than she does when she eats, but it feels like the combination of stabbing the food and twirling the fork and keeping it on the fork and getting it all in her mouth is just too much.
We have two different belts. That’s what we used to get her off the floor last night.
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With her being on hospice, it doesn’t matter if she had a stroke. If changes are caused by something like a UTI, that’s something relatively easy to fix. It sounds like her issues are the kind that can’t be fixed. I’m so sorry. It’s difficult when things get to this point. We are going through similar changes with my MIL. It stinks.
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My friend got a Hoyer lift to help lift her tall and heavy dad when he fell to the ground. He was about 6’6” or so and probably well over 200 pounds. She taught the aide and her relatives to use the lift too. The fire department threatened to call adult protective services if they got any more calls to help lift him off the ground.
It is one way to lift people who are much heavier than the person doing the lifting.
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@Youdon_tsay you are an amazing daughter and of course your husband, an amazing son-in-law. I totally get your frustration that the sibs that live nearby and handle the day-to-day stuff just won’t agree to outside helpers. I could tell a few tales about siblings and in-law siblings…but as long as your mom has memory at all, she’ll know how much you love her. And you’ll have your memories too. xoxoxoxo
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@Youdon_tsay the special fork was one of the things we used. But for three months, my mother didn’t eat at all. I settled for giving her a bite of ice cream. Ensure seemed pointless and kind of against her wishes, and also had Vitamin K which opposes Coumadin. Interestingly, she resumed full eating after those three months and losing 45 pounds, for two weeks, then died.
Is your mother hungry? Frustrated by the inability to eat? If she is okay with not eating, hospice trained me that that was okay. (I learned this in volunteer training.)
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I am so sorry to hear about your mom’s decline. Am I recalling correctly that your local sib and spouse do not live in the same residence as your mom? If so, are they now living and caring for her 24/7? As you know, it’s so demanding physically and emotionally, I wonder if you can help them find a few private home service to interview to see what they offer. It’s possible that local sib is just so overwhelmed that he/she can’t take on one more task.
I hired a private care live-in service (24/7) when my dad started receiving hospice. Dad’s mobility was impossible but my mom was so against having a “stranger” in the house. However, I had to put my foot down on this matter because there was no way my tiny mom could help him when I wasn’t with them. It was expensive ($10k a month), but we only used the service just shy of 2 months before he passed. The service provided a much needed reprieve after taking care of him as he declined over 3 years. Finally, mom slept without too many interruptions. I left their home daily knowing that the care provider is there to care for him.
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My MIL woke up in the middle of the night to go to the bathroom (she refuses to use the commode next to her bed). She pulled herself up on the sink, which is not on a cabinet (it just hangs on the wall). The sink came off the wall and she & the sink ended up on the floor. She wasn’t hurt, fortunately. The AL staff had to move her into a spare room while they fixed her sink. When SIL got there, MIL claimed that she had no idea why she was in another room & that she didn’t pull the sink off the wall.
She has had a couple incidents at night - one time she fell out of bed & didn’t remember it. At that time, we switched her to a hospital bed for her safety. The commode was added for her safety, but she won’t use it. She may need an overnight aid. But first … she had trouble sleeping at night for years & was on some sort of sleep aid. I told H to find out if she is still taking sleeping pills. If so, that may causing issues at night. She sleeps most of the day, and she has been on hospice for more than a year … there is no reason for a sleep aid at this point. He is going to find out if she’s still on it & discuss taking her off if she is.
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I do think she wants to eat. She’s not frustrated and acting out. I can see something more like resignation when she can’t get the food to her mouth. If eating were easy, I think she’d eat more.
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While not a perfect solution, maybe providing more liquid meals would help. Ensure in a toddler cup with a straw. Toddler meal pouches. We had to switch FIL to a liquid diet when he couldn’t swallow properly. He enjoyed the toddler pouches, in particular. It may be easier to get nourishment that way, since it doesn’t require much coordination.
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I have two local sibs. Mom is never alone. When I’m not there, sibs and SIL take turns either sleeping there (mom does reliably sleep through the night and can no longer get herself out of bed, which is a blessing, as we all get a good night’s sleep) or relieving the other during the day.
At this point, mom isn’t too difficult to care for, IMO, but it’s the transitions that are difficult – from bed to bedside potty, from potty to wheelchair and then vice versa, and then finally to bed, which is easiest because she can plop onto the bed.
With my dad several years ago and mom in December, I arranged for companies to talk to us about hiring care. My SIL was all about hiring someone for 14 hours/day. I called an agency, and they came out on a Friday night. Then she decided it was too expensive and never mind. She wouldn’t even consider my suggestion of four hours/day in the mornings so THAT person could get her up and dressed and toileted and change linens or whatever. I can’t MAKE anyone do anything, but, trust me, I have tried to get them to act on hiring help to no avail.
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I recommend using something like a Kennedy cup rather than a toddler cup, for dignity. This is what my teenage son with cerebral palsy uses.
We also use “The Wright Stuff“ company catalog to get ideas for useful adaptive equipment. We don’t always buy it from them because sometimes items are a lot cheaper or quicker to arrive from Amazon. But they have lots of great ideas.
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That’s actually similar to the kind of cup we used. Thanks for pointing that out.
I am sorry that your local sibs don’t see private care as a value for your mom. Maybe they will get there at some point.
I was more concerned that avoiding other ailments like broken bones, etc that would cause more pain and stress to dad. He lost his balance once and fell on his rear and had a huge hematoma that was very painful and took a long time to heal.
Local sibling took Mom to get blood tests that have been delayed two weeks. I wait for the results to show up. I notice they seem incomplete. I wait patiently to not jump to conclusions. They are i complete.
Me: Did she take paper scripts or are these the same standing orders? BC some of these are new tests from the CRNP
LS : I didn’t look to see what they did,I just took her over. I figured she knew…
Me : Okay, did Mom notice what they did?
LS: she said they only took one vial
Me: yeah that’s a flag right there. I will call the doctor for clarification
LS: She doesn’t have to go for 6 weeks.
This is absurdly illogical, but I do not comment apart to say well, let’s see. It seems maybe the new odd tests are 6 weeks and the old ones are still the same interval. (Which turned out to be correct)
I just kept thinking that I am not There,I cannot make LS pay better attention, I cannot make Mom assert herself, I cannot move there. But it isn’t some special knowledge to double check so the elderly lady isn’t having multiple, uncoordinated, sticks. yeesh.
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I had a nice convo with my sister last night and expressed how I was worried that mom’s death would be so difficult on her and my brother. Today, both of them called me about a plumbing problem at mom’s house. Doesn’t that sound crazy? Why call the person 3+ hours away? But you know what? I solved the mystery! Sometimes, they give me grief about paying attention to details, thinking I ask too many questions, etc. I wanted to say “how you like me now?” but I refrained. 
Meanwhile, my sister is now asking to be at all the nurse’s visits. Apparently, she found out accidentally info that our SIL didn’t tell her … that mom’s oxygen level was low as was her BP. Also, she got mom’s house appraisal, and it was surprisingly low. I do hope my sibs don’t try to hold out for too much money when we go to sell. We’ll cross that bridge when we get there.
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