Not sure I can handle caregiving. How do we decide what Mom's going to need to do to get better and be independent again?
Hi all, i’m New to the site and to caregiving.
My mother was recently hospitalized for weakness and malnutrition, she now has peripheral neuropathy. Up until this point she was living alone and doing well.
She should have gone to a SNF after being in the hospital but thought she could do fine at home. Fine at home is turning out to be her laying in bed saying ‘bring this bring that’ and wrinkling her nose at me when I tell her she has in home PT today. She doesn’t like the PT, she thinks the lady is insulting her home and the way she lives. She also thinks she is too pushy and “making me do too much.”
I hired a private paid caregiver for during the day and it is burning through the bank account rapidly. She makes me stay with her during the night, “because I’m afraid I’ll fall” but does really well with the walker she uses and doesn’t fall.
Today she talked about going to a SNF since it’s draining her to have daytime care (and draining me to be here nights when I work all day) but this evening she clammed up on it. She has until next weekend to still be Medicare eligible.
Then I told her the day time carer will have to work overtime a few days next week and she shrugged and said, “ok.” Then I talked to her about a rehab I found that some of her friends have stayed at and she got that far away look in her eye looking away from me.
I think she wants to be waited on more than getting well. She goes from doctor to doctor with few answers, but insists on making another appointment to see if today’s answer will be different than yesterday’s. My overnight stays will cease this weekend, mostly because I need more than three hours of sleep and so in some weird way her hand can be forced to see what she’s going to need to do to get better and be independent again. She will be safe during the night, believe me. Even she has a plan for that.
This is so awful.
As this goes on, I believe my aunt is so worried about having to move to assisted living that she has been hiding some of her problems and is not sharing her real concerns. I thought she was living alone and doing well, but I am now starting to wonder just how much she was masking.
Just curious, when you talk to the PT about your mother's progress, what does she say? Everyone I talked to always said how well my aunt was doing.
i hate to leave her alone again but I can’t be by her side 24/7. I’ve lost 10 pounds in 3 weeks being here helping her. My cup is empty.
I told her years ago i don’t want to take her choices away i don’t want that FOR her, but at this rate when I leave friday night, she’ll see if I’ve actually done that or not. I was moving so slowly this morning she kept asking if I was alright because “you’re going to be late for work.”
”Mom I’ve been awake since 130 this morning when you called for help I can’t move very well this morning.” I’m 50 going on 100 right now.
”Well you better get moving you’re going to be late. But first would you throw all this garbage in the trash.” The wastecan is right next to her.
THAT’S what she’s capable of doing.
I do agree though, she needs to do more for herself.
Doctor surfing for answers she likes also will not help get her the treatment she needs, whatever that may be. Find a geriatrician and get her a comprehensive evaluation based on objective data. Although her feelings are important, they are less important than her actual physiological and safety needs.
Sit down with her and her finances and establish a budget that includes caregiving expenses. Get her important paperwork in order i.e. living will, durable power of attorney. Make an appointment for her with an elder law attorney.
You can help your mother make a plan and help her effectuate that plan.
It is super frustrating to be put in the position you are in. Parents tend to hide the reality of their abilities and usually to their own detriment. My dad led me to believe that he was building a barn and wanted to move for a new start after a divorce, when we picked him up he was almost dead, we honestly didn't know if we would get him to our home. I would have hospitalized him in his home state had I been given any information about his actual health. His new start was to come to my home, be the head of household and have me be his little fetch it girl. I guess we can all dream. I had to place him in AL, after 60 days in the hospital and SNF. I am not willing to be a caregiver to anyone that won't do their very best, i found out that no matter how fast I dance it is never enough. So I decided that I can not be made to feel inadequate by someone that sits on their duff and tells me that I am not enough. Good, get up and do it yourself. Sounds like your mom is in the same category as my dad.
You are correct in believing that you will see what the truth of her situation is by not propping her up. Do not let her manipulate you into being her doormat. I would bet that she hasn't been doing as well as you think, malnutrition is a sign that she isn't taking care of her basic needs. You will need to contact APS for lack of self care, they can intervene and help her get the assistance she needs. The longer you are involved the more responsibility you will have, it is against the law to knowingly let someone starve or sit in their own waste without doing something to help them, calling and reporting is helping her.
If she won't or can't help herself she needs to have someone she will listen to help her.
Best of luck, seniors can be so difficult to deal with.
The reason I ask, and suggest that you dig down into it as far as you can, is that it's almost impossible to know what it's reasonable to expect of her, or to estimate how much improvement you can hope for, until you know exactly what you're dealing with. Her lethargy and helplessness might reflect a poor attitude but they might genuinely be all she has to offer right now. What investigations have been done?
Depends on how much of a bad guy you're willing to be, but myself I'd try baring my teeth and giving her two options: one, have it your own way and end up in a Medicaid bed in a nursing home before too long; or two, do as you were told in the first place and go to rehab, dammit ("dammit" optional).
Poor love, she probably does feel washed up and wretched and frightened and just wants nicer answers - but maybe, and you know her and I don't, that's exactly why you have to be tough for her.
Also: I respect and agree with the principle of involving her in the decision, but don't give her too much thinking to do. Thinking is hard work, literally, and she's not up to it. It's better to give her Choice A, that's your lot, along with the opportunity to object if she really has grounds to object, than to add to her burden more than necessary.
Mom has a history of spinal stenosis, has had surgery for it and for all we know it may have progressed to something more.
i have no doubt that she is scared, and uncertain, and her controlling me is the last bit of control she has, but when physical therapy “isn’t what I want to do right now” I have to start doubting, and I don’t want to. When the day time carer says “let’s get you walking,” and she says “no I like my bed today,” then has me run ragged all night for this that and the third, it’s hard to know what’s wrong. The only stamp I can put on her is that she just doesn’t want to get well. What’s being done for her is fine, and why should she have to work for it?
We’ll see that first night I’m gone. I have no doubt her mind will change. Quickly.
You were like a lamb being led to the slaughter regarding her putting off the rehab but I can see you are a quick learner.
Three of the five health issues you’ve listed for your mom can be helped by the rehab and actually in the big picture it’s more like 100%.
Take that nurse money and get her hearing aids. She can get two premium hearing aids at Costco for $1600. Loss of hearing can lead to dementia and the brain forgets sounds it doesn’t hear for awhile.
Being independent is more than directing caretakers.
To be independent she has to get up and do the work. If she doesn’t want to be independent then it’s time to look into alternate housing.
But HF47, how did she become malnourished bad enough to develop neuropathy?
I always think of diabetic neuropathy and didn’t realize it could develop from malnourishment until I did some research.
HF47, your mom may need some cognitive testing.
Do a little research on ADLs. Activities of Daily Living. Discuss them with her.
Check our “Being Mortal, Medicine and what matters in the end” by Atul Gawande.
Mother had had spinal stenosis going on for many years prior to all this. Because of the sudden onset and severity now, we’re getting an MRI today.
The doctor in the hospital was 100% optimistic for her full recovery, partly because she walked at one point for over half an hour with the PT there. The neurologist who tested her yesterday found all her sensory and neurological tests were fairly good, but when mom explains her hands are “numb,” but can feel the neurologist’s pin stick, it’s hard to know what is really going on.
They have run blood tests for all sorts of vitamin levels, and that’s fine, but when I cook for her and she says, “no I dont’ like that,” how am I supposed to get her to get her stamina back?
If she's still competent, I'd set boundaries and allow her to live with the help she arranges. If she's not, then, I'd take measures to get the authority to act to protect her. I had a couple of doctors and home healthcare workers tell me my LO was okay, just lazy, selfish and demanding, but, she wasn't. Later, that became quite clear.
Bathing, showering, I was taking her to the beauty shop weekly, all of it. She had a quality of life until that night I had to call an ambulance.
all the tests say she has not had a stroke, and just the other day she rattled off all the bills that I needed to pay, which I did. One of my mother’s other struggle is major depression, (and my own). She has been fiercely and proudly independent, so this acute illness does completely come out of nowhere.
I learned today that she has walked much of the house with the carer, using her walker. She called me to tell me she will no longer use the wheelchair to get to the dining room, but will have it near by as she gets used to more exercise. I think today she saw me in my purely exhausted state when I couldn’t get up for work on time, and I over heard the physical therapist ask her, “So your daughter is STILL staying with you?” Hopefully, message received.
I know you can’t keep missing sleep. When I don’t get enough sleep I feel like a zombie!
It doesn’t take long for codependency to happen and take it from all of us, boundaries do need to be set. Many people on this site helped me help myself as a caregiver, and in turn also help my mom because she deserves a caregiver that isn’t completely burned out. Stick around and you too will receive lots of good advice.
We all wish you the very best. Take care.
I think she will do better at a SNF
She will not be able to lie in bed or in a recliner and ask that things be brought to her. She will be motivated to move more. And if she wants to come home that will motivate her even more.
Tell her that you are not well, you need rest, you have a family that needs you. And you are tired and if you get into an accident on the way home or the way to work because you have not had more than 3 hours of sleep who will care for you? There is a real possibility that you two might end up roomies in rehab!
That has crossed my mind too - if I so much as even caught a cold she’s on her own because that wouldn’t be good for her.
My backbone has returned and I will let her know that I’m going home this weekend, my family misses me, she needs to figure out her life. She is still completely rational when she’s not being demanding, mean, or yelling. Ugh..
There’s HELP and there’s DOING FOR, and I know what side of the line I fell on.
Thanks all.
Somehow he could still drive but only to work which wasn’t far. Wife does all the driving otherwise. He always liked belonging to a gym so he continues to work out and of course being active makes one feel better and keeps the brain sharper.
Your mom sounds like she was enjoying her life in spite of the depression and now has to figure out this next bit to see how she can still enjoy life while she’s living. It’s not much fun for you or her for her to decide she’ll be a full time patient.
Please do read the book recommended. It helps a lot with the big picture.
Since your mom could be considered home bound, she would qualify for HHC through Medicare but that would come AFTER rehab.
About the nourishment.
My dad was deemed malnourished at one time. His albumin was off in his blood work which led to the diagnosis. He was being treated with extremely strong meds for a terrible skin condition. This diagnosis led us to realize my mom was having a problem providing our dad with a proper diet. He was very depressed and she was feeding him Xanax unknown to any of us.
So we were told to provide any fattening food we could that he liked. So malts it was. Of course we cooked other high fat, high carb meals to go with until he got his strength back.
Today in caring for my aunt, I make sure she has Ensure or protein drinks daily to supplement her meals. She has dementia and needs help with her ADLs, so she has help for three hours each day to make her a hot egg breakfast, give her meds, and keep her house clean. The aide gives her a hot thermos of soup and a sandwich, a bit of chocolate or other desert before she leaves. That sometimes doesn’t get eaten but I know she’s had plenty of calories otherwise. I have them record her vitals daily and HH keeps a chart also that lists her weekly weight. Those are all good clues as to how well she is eating, if the meds are doing the job etc.
It does take oversight to keep this all going but I don’t live with her and she’s an agreeable person which helps tremendously.
HF47, you do have to take care of you. A lot depends on that. Mom has to do her part too. Some of it’s not fun but that part only last a few days until she gets into the swing of things. Hugs to you. Enjoy your weekend.
However, If she has an Immense amount in her Bank and No one, hun, Is Trust of it before hand, The state will Take it all to Pay for her Way.
as a follow up to my thread, mom has turned a corner, and will walk herself to and from the restroom with her walker, herself. I went to check on her one night and she wasn’t in bed so I flew into her room and looked on the floor and she was nowhere to be found until I heard the toilet flush. “What the H are you doing!” I said. “What the H do you think.” You know what the H means...
Her stamina has increased, she’s still a little fearful but after having given it some thought she’s found the will to try and get her independence back and her control back. I’ve set the boundary that I’m still here to help, and I don’t live that far away if I’m needed, but she’s still got a sound mind and has to do things her own way. I can’t prevent every bad thing that could possibly happen, there’s no way to do that, all I can do is what I’ve been doing. And that was a LOT.
I’ll have to talk to her about the caregiving service though, it’s burning the bank account and may need to be cut back, but maybe that’s not a bad thing either.
this is my first night back at home and I think it will show her she needs to recover and get her stamina back. Or, that she needs a different living situation. Either way she insists on being on her own as much as possible and unless it proves dangerous, I’ll respect that. She actually is improving to some degree so there’s hope at this point.