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!
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.
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.
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!
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?
Step away.
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.
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.
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.
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.
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!
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.
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.