My mother (65) had a stroke back in November, and has been in a rehabilitation facility since. She only has use of her right side and cannot walk. She also has dementia. We had originally planned to send her to long term care because I believe that’s where she should be to get the care she needs. The hospital did a complete 180 and at our family meeting they had already told my mom before asking us she is going home this Wednesday and want me to be a 24/7 caregiver. She had already accepted going to long term care before this point but now she is set on going home. I am in the process of getting help for a list long of mental health conditions and I’m afraid because I can hardly take care of myself let alone someone who needs the level of care she requires. I would be doing all of this on my own with 1 hour of help a day for 6 weeks from nurses.
I honestly don’t feel this is the safest option for her, but I live in Canada so I’m hearing our wait lists are a year long, which makes sense for why the hospital was pushing so hard, unless it is an emergency. I think this should be an emergency since we are not even sure if she can keep the house she is in. She had an abusive boyfriend who is currently going through court proceedings because of his abuse, and they both have their names on the house. Not even sure how long her house will be available to her.
I feel they are just pushing her out of the rehab facility because they need to, not because it is the safe or right thing to do. They want me to make a decision by Tuesday if I’m going to bring her home, and if so she would be discharged Wednesday. She will be in a wheelchair and she doesn’t have use of her left hand or leg. Honestly, another component to this is we had an awful relationship and she cut me out of her life like 18 years ago to pursue her romantic relationships. The only relationship we have had is going out to dinner once in a while. When we did live together we butted heads a lot and didn’t get along. I’m worried this will be an absolute nightmare and I’ll be stuck in a situation I’m not prepared to be in. I should also mention I have fibromiyalgia and arthritis in my knees, so I’m unsure of my ability to do the transfers. (I’m 28 years old) I guess I’m posting this just to see opinions of others. I feel so guilty having to do this but my heart tells me it’s the right thing for her to be in LTC. Thank you in advanced for your replies!
Guilt is a word I am finding tiresome now. It isn't what you are feeling. You a GRIEVING, the other g-word. Not everything can be fixed. Guilt infers that you caused and can change all of this; you didn't cause it and you can't change it. You can only save yourself and your own life.
No one is going to change your siblings either. Not us and not you. Step away from them. You should now have your own job and your own family (which needn't be blood relationship).
Take care of yourself and your ONE LIFE TO LIVE.
And you would agree to this because..?
You mention dementia, but it sounds as though the next step is still mother's decision to make. If she decides she wants to go home then that should be facilitated, for sure. But not by you. She doesn't have the right to decide that you are responsible for providing her with full-time care. The hospital wants to make that happen, they will have to do it without your co-operation.
Is it more complicated than that?
We had a Canadian poster a year or so ago who indicated that this had fairly recently been enforced in Canada, and was causing problems because there weren’t enough facilities to send people on to. That seems to be where you are at.
My guess is that you won’t be able to keep M in hospital. Your only option is to refuse to take her in yourself. That’s your decision. They can’t force you to take her. Your best option is to let the State take over responsibility for her options. She may end up being sent to somewhere which is inconvenient for you to visit, but there is no reason to assume that will be worse for either of you.
Your mother deserves far better care than being isolated at home with one unqualified caregiver.
She needs professional long term care. Period.
How DARE they!
You're not already living in her home or something, are you? It's just that otherwise I can't see the difficulty in announcing that if she is discharged home on Wednesday you will not be there in support.
Like this:
"1. This would be an unsafe discharge.
2. I'm moving to Florida, to start a business with my new friend, Cxmoody."
Then, the rehab will HAVE to find a placement for Mom. They will have no other choice.
If so - well. What can you say.
If not - she would be going to an empty house.
How did the assembled health care team get it into their collective head that you and your father would possibly be supportive of her going home to the extent of being there and doing the work?
That wouldn't be because you and he appeared to treat the proposition as if it wasn't completely barking, would it?
Call the head of this "team and tell her/him in advance of this weeting that you are performing no care tasks.
Why will people shoot themselves in the foot like this..! We would love to take responsibility for my EX wife living in her own home which her abusive ex-boyfriend can't enter because there is a ferocious restraining order poised ready to bite him if he does... Only my daughter is mentally ill so this might all be a bit much for her and my wife wouldn't want me caring for her... but oh, okay, if you folks all think that's best I'm sure we'll cope somehow...
No. Just no. It's a NO.
I think this is a great opportunity and starting point for you. Good luck!
The hospital will say whatever it needs to to make her anyone else's problem. Every single hospital stay for either of my parents, I was asked if I was the caregiver. When I said, "No." That put an end to the pressure. They have to ask and they have to find alternative solutions when you say "No.". Only you can force yourself into this, really bad idea, situation.
Please do not get bullied into doing something you know you can't and don't want to. It will not end pretty. BTDT
That's a bit of wisdom that I'm sure I'm mis-quoting...but it sure sounds like it might apply here.
That's it. No reasons. Just no, I cannot provide the care my Mother needs. Another solution needs to be found.
She shouldn’t be discharged early. She should also be able to be placed permanently in a facility in order to receive the proper care.
While mom made a good deal of progress during her stay in rehab, she wasn’t quite ready to leave.
I was fortunate to have the staff at my mother’s rehab facility explain her situation thoroughly. When I asked if she would benefit from a longer stay in rehab they said that she would. So, I opted to allow her to stay a bit longer.
Your mom’s rehab facility knows full well that she isn’t quite ready to leave and they aren’t willing to do what is best for her. How sad for your mom and you.
Don’t accept their unwillingness to cooperate with you. Fight back. Tell them that you’re not capable of caring for your mom now or ever.
I would also let them know that this isn’t anyone else’s decision to make but yours.
Wishing you peace as you continue on in this difficult time.
its sad because they are also using my moms desperation to go home against her, and I. Everyone wants to go home in facilities like that. Now her heart is set on going home when I had already helped her come to terms with going to long term care.
I wish you peace in your situation too! I hope things get better for your mom too 💗 thanks for taking the time to reply to me
When I was under much family pressure to provide hands-on care for family members - I sought some counselling advice.
The councellor pointed out some facts;
1. I was female
2. I lived close by
3. I had good care skills
Was my sex, proximity & nature being exploited? Were these facts being used for unrealistic expectations?
Our joke became my yardstick measure. What if instead..
I was a man & was a long-haul truck driver in Canada?
What would the expectation that I take on caregiving be then?
Zero? (Not saying guys couldn't or wouldn't, just how the expectations would change)
thats so true! We are expected to take on that caretaking role. I think it’s also because they know I take care of my dad also so I do have a good nature in terms of taking care of my family... so that definitely makes a lot of sense!
I know you probably care about Mom or you wouldn't be involved but you can't do this. You need to stand up to these people and say they have not asked you what you want or think. This woman abandoned you at 10 for her boyfriends, you owe her nothing. You don't work right now because of your own health problems that can be debilitating. So how do they even think you can do 24/7 caregiving. That is slavery. Then you have been diagnosed with a mental illness. Your Dad walks with a walker. If there is anyone you should care for it would be him. Mom cannot be discharged to her home. There is no one to care for her. Her boyfriend is in jail on a restraining order. So my answer is NO I will not be my Moms caregiver. My Dad...he hasn't been married to this woman for 18 yrs. He really has no say it what happens to her. So you all have to figure how YOUR going to handle this situation. Then walk out or hang up.
That’s a great idea I didn’t even consider that!
of course I care for her, and I feel bad for what has happened to her since she is so young to have to go through something like this.. but I can’t imagine having to take on that role 24/7 when I struggle with day to day activities such as keeping my house clean already. It’s already tough in my current living condition because I live with 3 people and I’m basically the only person who cleans, so I really struggle to keep up. I can’t imagine dealing with a situation like this, having to provide 24/7 care to my mom. It may be different if she was more mobile but I just can’t see it.
thats another issue I have is, I really don’t want to leave my dad. He is older than my mom (72) and I literally just had to call an ambulance for him recently and he spent a month in the hospital because he gets really bad UTIs. He also went 3 years ago with the same issue and it got so bad he almost died because of sepsis. I need to be here to monitor him because he’s terrified of the hospital and won’t go on his own when he needs to... and I feel I’m basically somewhat of a caregiver for him already because I help him go to all his appointments and everything. He is still semi independent but I have to help with a lot of things since he has a walker. He doesn’t accept the fact that he needs me to be here too because he grips super hard to wanting to be independent and doesn’t really realize how much I help him with around here. I do all the laundry and clean the house, help with groceries, everything. So leaving this behind would also be stressful, I care so much for my dad too. Thought that would be good to explain because it’s definitely added stress to my currently already somewhat stressful situation.
I agree, the decision is mine. I will call them on Tuesday (since Monday is family day here in Canada) and let them know the answer is no. I think they knew I was leaning towards that and that’s why they weren’t letting me speak. That’s another thing that happened! At the end of the meeting the doctor came back in and said that he “didn’t think my mom had dementia and she was misdiagnosed” based on the conversation we had at the meeting, not based on any tests. I talk to my mom every day and she is definitely not there cognitively, whether it’s brain damage from the stroke or dementia. I was told it’s “vascular dementia”. It just felt they were trying so convince me it was a good idea to do this.
Rehab discharge plans are kind of like choices A B C.
A) Home
B) Home with support
C) Care Home (some sort of supported or assisted living, NH, MC, group home etc)
Your mother has suffered a life changing health event. While she has survived the stroke, she is sadly no longer independent. So she cannot return home as she was.
Option A is out.
Rehab is trying for option B.
But sometimes the support needed is just not possible. Needs too large, too expensive, not available in your area. A team is often required: family + paid supports. Not just ONE family member & NEVER a family member volunteered by others!
Best practice is that any person taking on the responsibility to arrange all the supports must have the legal authority. Eg the person themself (if able to) or an appointed legal guardian/legal POA.
There are big questions about your Mom's thinking skills atm. Whether vascular dementia, brain injury from stroke or other, it does not sound likely she could locate, arrange & manager a team of staff.
So option C is the only realistic option left.
DO take the good advice given here. Keep coming back for support as you travel this hard road.
Your father should have stayed the heck out of it! And to suggest that you need to "try" it? Well, now you know what HE will expect when it's his time to need more care. You said he already doesn't realize how much that you do.
I hope you can get stronger and to the point that you can move out of his home, get a job, and be independent. And when he does need caregiving, you don't move in with him again.
Who is the 3rd person that lives with you? Is it your father, your bf, and....?
You had quite a team ganging-up on you at that family meeting! Who else is your family that is intent on throwing you under the bus?
When you call the facility and tell them NO WAY tomorrow, think of all of us right there beside you (or on your shoulder, or a Greek chorus in the distance chanting, "NO NO NO" or whatever).
One more thing -- they might try to convince you to "try it" or they will find you help or whatever...do NOT believe it, because it is a LIE. Once she is home, it will ALL be on YOU, and there will be no help forthcoming.
Keep us updated! What time will you call them tomorrow?
I agree he should have, but he did a lot of the communicating due to my anxiety which is somewhat my fault. I told him some of the things you guys were saying and it helped him understand that it really is not the right thing to do, so luckily I’ll have him backing me up.
i should have clarified by 3 I meant me, my bf and my dad.
my cousin is definitely going to throw me under the bus. She hasn’t been in our lives since I was a kid, and she came out of the woodworks when she found out my mom had a stroke. To make matters worse she has told her she is leaving 25% of her money to her, when she hasn’t even been in our lives, so now she is being really nosey and trying to get my mom upset with me by saying I’m angry with her when I didn’t even imply that I was. She’s already playing sides so I can only imagine how much worse this will get. She also has friends who I asked advice about this because she is a nurse, she said that I should try it also... but this was also after a trip to see my mom in the hospital where she also just so happens to work. Before she was saying she’s not sure I can do it. There will be a lot of pressure from people who wouldn’t do it themselves if they were in my position that’s for sure.
your support is a blessing, thank you everyone in this group for taking the time to help me with this! Originally I was going to set it up to try it for a month with a definite back up plan for long term care, but I don’t even think that’s the appropriate thing to do at this point.
we will be calling them on Tuesday early in the morning (today is family day in Canada so no one is working) hoping and praying it goes well!! I will keep you updated
We are all pulling for you! You’ve got this.
(What about you??)
"She has nowhere to go and no one to care for her."
(I'm sure there'll be help for you to care for her.)
She has nowhere to go and no one to care for her."
(It's just until she can get placement in a nursing home.)
She has nowhere to go and no one to care for her."
And so on...
Awful, but it is the plain honest truth.