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!
If you don't have that document, which gives you authorization under certain circumstances to carry out mom's wishes if she's competent and what she NEEDS if she isn't, you have no "standing" to do anything.
Don't accept any responsibility for this mess that is of your mother's doing.
If you had legal standing, if your mom had LOTS of money, if you had the ability to set firm boundaries with her and with others and if you had the ability to not care at all about what others think about you and a guarantee that you'd get reimbursed for any monies that you laid out, then you MIGHT be able to sort this out.
Without ALL of the above, it's just going to turn into an anxiety-provoking $hit show for you.
Step WAY back.
Get the idea that there is a "we" here out of your head. You and your mother are not "we".
She is her own competent legal entity (until declared otherwise--at that point, a public guardian can be appointed); if she wishes to hire a lawyer, she can do so.
The way not to get roped in is to get off the dance floor.
I have a few additional thoughts. While I believe you will stand strong and NOT get involved in your mother's care, I am concerned that you are already heading down the road to being your father's 24/7/365 caregiving slave. You've already written that he doesn't realize how much you do for him.
In your original post you wrote that you can hardly take care of yourself. And you are the caregiver for your father and disabled bf? You are so young...do you have any dreams of having a better life? Having a job? Living independently?
i do have dreams of a better life sometimes... I really do love my boyfriend though and wouldn’t change having him for the world. He is very supportive of me... I guess the issue is getting over my mental health issues (especially agoraphobia) it makes me afraid to leave my house. I know it sounds silly but I’m genuinely afraid of the world because of certain situations I’ve been through... I have to get over that fear so I can face the world again. In a sense I don’t mind taking care of my dad and boyfriend because I love them, but if my dad ever got much worse I don’t know what I would do. One can dream though! I think I’ll make it someday. I luckily do make some money online, so it does help... and I’m saving as much as I can!
Here is what happens in the States. When a person has no to care for them or no ine is willing to care for the person, the State steps in. The court assigns a guardian and that guardian oversees that persons care. It is much easier for that guardian to get a person to get the person in a NH. If this is how it works in Canada, let them take over Moms care.
My suggestion, don't even allow them to tell you how they "can help" Mom. If like the States, the help is limited and you will need to be involved somehow. Its called "Unsafe Discharge".
N0! I will not be her Caregiver. I have health issues and already have my Dad I care for.
NO! I will not coordinate her care. I cannot be stress out it makes my illness worse.
NO! Mom cannot return to her home. NO ONE IS THERE TO CARE FOR HER!
Then I would say that she was in agreement on going to a facility until the SW told her she was going home. So you would appreciate it if that SW tells your Mom its not happening. And you would appreciate if people would listen to you. You have arthritis, fibromyalgia, and suffer from anxiety at 28 yrs old. You already care for 2 people how in the h**l do they think you can care for you Mom. She left you at 10 with your Dad. Now she and them expect you to care for her. Again NO its not going to happen.
it really got me yesterday when she texted me hundreds of times trying to make me feel bad all day. She even said “I would take care of you if you were sick” but she abandoned me when I was sick. Even weirder, she also expects my dad to move in with her and help me care for her.... it’s just crazy because in the 18 years they were apart they hated each other and now she expects him to take care of her. She really has ruined our family in so many ways, even financially. She gave all her money to her bf who abused her and she hardly has anything now. It makes me sad to think :( so this situation holds a lot of weight emotionally too for me outside of how crazy the situation itself is.
BUT if you are in a hospital or rehab, and going "home" is deemed unsafe, the the patient's placement becomes a priority and the waiting list is skipped.
Perhaps one of our Canadian posters knows how the subsystem works up there.
A very wise and compassionate discharge planner once said to me "Your mother is in a bed. Don't ever discharge her to home if she's in a bed. Bed to bed transfers are always easier. You take her home, you're back at square one."
Even when pressed, we NEVER contemplated taking mom to her home or any of our homes. Our resolve was clear and absolute to anyone we spoke to and they could see that none of us (3 siblings and our spouses) were united in our lack of guilt and knowledge that mom needed far more than care at home.
People sadly have strokes, fall & fracture hips & suffer other illness & injuries preventing them from returning home every day.
No hospital or rehab can force a patient out on the street. They find a bed. It may not be as local or nice as family would like, but they find one.
Tell mom to speak to the Social Worker.
If this is the hospital SW, I would find out the name of his/her supervisor and report this.
I would also get in touch with the Patient Advocate dept at the hospital.
Step away.
All you have to do is email this person and state that you are not willing to take it on and come to that you don't really understand how the idea came into being that you ever were willing.
Where'd she hear that your boyfriend is moving in?
I only ask because there have been a couple of batsqueak hints in what you've said that you might have lent more weight to the whole thing than you realise. You say that nobody seems to listen to you. What have you actually said?
OMG. This is your mom’s friend trying to manipulate and strong arm you here? She is WAY out of bounds and out of her frickin’ (pardon my French 😉) mind if she is saying, among other things, that heavy-duty 24/7 caregiving might be good for a person with mental health challenges. That is totally false!
Wow, this “friend” is one nervy dame!
Hi Rosebud!
So there are a list of question to consider bringing forth at the family meeting:
1) What supports would there be in place through Home and Community Care Support Services (HCCSS) for Mom if she is discharged home? How often would PSW come?
2) Would Mom be eligible for outpatient Physiotherapy (PT) through Freeport to continue her physical rehab related to the stroke and, if not, could she have some PT through HCCSS?
3) Would an Occupational Therapist (OT) come to look at the house PRIOR to discharge, to ensure that all equipment needed to make the transition home is in place ie. ramping to access the home, transfer aids, wheelchair - does Mom qualify for an electric wheelchair?
4) Can the Assistive Device Program (ADP) authorization for equipment funding be started for any wheelchair or eligible equipment for Mom PRIOR to her discharge home, given that there is such a long waitlist for OTs who are ADP authorized in the community?
5) Can OT help get Joan set up with Mobility Plus through Grand River Transit?
6) Make sure that Rosebud has had training of proper transfers for Mom and also that Joan is discharged with written instructions for her existing exercises, so that others can help remind her of these at home.
Additional points for you to talk about with the Social Worker and HCCSS Care Coordinator at the Hospital:
1) What is the back up plan if the discharge home fails - whether that be that her home is lost in domestic settlement or Rosebud is unable to continue with 24/7 care for Joan?
2) Come up with some good strategies to help Rosebud cope at home and having plans for respite for Joan? Could Rosebud have access to a Social Worker through HCCSS to help her, as a caregiver, in the transition to caring for Joan at home?
Things to consider to make it safe at home:
-adjustable bed for Mom
-Lifeline or some type of emergency call button for Mom
-baby monitor, so that Rosebud can hear Joan if she is in the basement.
-gate at the tope of the stairs by the kitchen so her wheelchair doesn’t accidentally fall through there.
-ramp in the front door for easy access and also that allows her to sit out on the front porch in the good weather.
I have written everything in third person, Rosebud!! Hopefully these questions will help you in the family meeting. These are are crucial things that I would ask to ensure support was there for my Mom, if it was my situation. I do think you can do this, with support. Your Mom told me your boyfriend would be moving in too, so hopefully he is supportive of you and can be a good sounding board for when you need it. I think you have some living space downstairs is going to be important so that you have a space to go to if you need it, or your Mom needs some space. I think you should definitely look into private options for care to supplement what HCCSS will provide, once your Moms financials are knowns, in terms of what is affordable. And…tap into her friend group - her Pastor may be a good person to help with that in terms of potentially setting up some times when friends some to spend time with your Mom, to give you some peace of mind while you can rest yourself. I think that this potentially may give you a really amazing sense of purpose. I know you’ve mentioned your anxiety and yes, there could be some challenges in dealing with that, while being a full time caregiver, but I also believe that having a focus day in and day out may help you potentially. Again, if you have a therapist, talk about it with your therapist.
I hope the meeting goes really well!
Your Mom is certainly excited about the idea of returning home, and being with you.
Call or text or email if any questions.
Talk soon.
Some suggestive comebacks:
If the hospital / rehab or anyone ask or say you should take care of your mother, say I have my own health problems and I can't take care of anyone. If they dare ask what health problems you have, say it's none of their dam_ business.
If the hospital / rehab say they will provide in-home help if you take her home, say her needs are too great to be at home. Home isn't safe for her. She needs to be in a nursing home.
When mom tells you she wants to go home, tell her: "mom, your health needs constant around the clock 24/7 medical care. At the nursing home, there are trained caregivers, nurse assistants, nurses and doctors that will watch and take care of you. If you go home, you will have none of that. It will be unsafe, and dangerous for you as I am not trained to provide the medical care you need.
(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.
We are all pulling for you! You’ve got this.
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
DO take the good advice given here. Keep coming back for support as you travel this hard road.
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.
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.
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!
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