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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!

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Your Mom needs placement for your own health. If you take her back home after hospitalization and rehab I think you will not ever pry her out of your home. You should have been planning with discharge planning personnel as soon as Mom went into rehab. But as he is still there it isn't too late.
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.
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Rosebud33 Feb 2023
I agree completely, and I appreciate your reply. I’m still young and this is an huge responsibility to take on, I think that she deserves better care than I’m able to provide on my own as well. Thank you for your advice ☺️
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You need to tell the hospital you are unable to take on the responsibility and are unable to safely take care of her. You do not have to be the 24/7 caregiver, in fact you do not have to be her caregiver for any amount of time. Just tell the hospital you are unable and she can not be released to an environment that will be detrimental to her health. Just say no, be firm and stay strong!
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Rosebud33 Feb 2023
your advice means a lot, thank you for taking the time to reply. I will definitely tell them that, I’m just worried about the long waiting list and where they will be placing her if I say no to taking her... but I guess that’s out of my control. I hope it goes over well!
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HUGS....
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Does this new plan, seriously, depend on your willingness to move in to your mother's house and become her primary caregiver for all but one hour a day?

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?
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Rosebud33 Feb 2023
This new plan came into play because the social worker suggested it, and my dad said it was an OPTION not something we would definitely be doing... and suddenly it was the forefront plan that they had collectively decided on. I never agreed to it but have been feeling a lot of pressure from my family, mom, and distant relatives to make this decision. I never felt it was the right thing to do. I agree though, I guess it’s best to keep the ball in the hospitals court and let them sort it out. I’m supposed to tell them on Tuesday what my decision is so it’s still not set in stone, just was feeling a great deal of pressure. There was like 10 people in the family meeting and they hardly allowed me to get a word in, all of them were insisting on home care and it felt I was left out of the decision making process even though it’s my life that will be impacted by this. It was very frustrating. I agree though if she wants to go home they will have to arrange someone else to do this that is qualified to care for her. Thanks for your reply!
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Hospitals are for people who need hospital care. They are not long term living options or rehab facilities. Where I am in Oz, this has been clearly understood and enforced for as long as I know, because hospitals are so much more expensive for the taxpayer. People can’t stay in hospital if they don’t need around the clock nursing and immediate access to high level medical care.

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.
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Rosebud33 Feb 2023
That makes sense, but in this case my mom does require 24/7 care and supervision... so maybe it would be required that they keep her in rehab until they find an LTC home. Unfortunately that may be what I have to do. I would prefer her to be closer but I may not have the option. Hopefully I can move her in the future somewhere closer!
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Please tell them from me to sod off (that's the expression, yes?)

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!
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Rosebud33 Feb 2023
That’s exactly what I feel like saying that’s for sure! I agree completely. I don’t feel I’m able to provide the level of care my mother needs, so if anything I’m advocating for her by demanding she get better care! She really wants to go home but I know it isn’t the best option for her. I’m not trained to do any of this and have no idea how to change diapers on an adult or do safe transfers. Your answer was very helpful, thank you!
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Sorry, Rosebud - the ten family members - minyan or not - CANNOT decide that you will move in with your mother and be her primary caregiver. No more than your mother can.

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.
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Rosebud33 Feb 2023
It was 10 nurses, doctors, social worker, and physiotherapist putting the pressure on. I agree though, as much as they want it to be their choice, the choice is still mine. I live with my father and haven’t lived with her since I was 16 years old, I am 28 now. She would be moving into a home that I’m not even sure is stable because she is currently in a breakup with her abusive boyfriend who has his name on the house as well. To me it seems like an unsafe discharge
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Maybe change your answer completely.

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.
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Rosebud33 Feb 2023
that sounds like a great idea! It wouldn’t be incorrect either, I genuinely believe the hospital is in the wrong here trying to discharge her home. Having a reason why I can’t do it would make it even better. I will definitely try that. Thanks, Cxmoody!!
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Rosebud, is the abusive boyfriend still resident in the home your mother would be discharged to?

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?
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Rosebud33 Feb 2023
He has a restraining order on the property but I’m not sure how long that’s going to last. It would just be me doing the care since my dad and mom have been divorced for 18 years. No one ever talks to me about anything really, and when I do I feel they don’t want to give me any straight answers. My dad was open to them about my mental illness and ever since then they haven’t been treating me with any respect due to decision making. They go to my dad instead. They talked to my dad and I think he said he would consider home care as an option, not a definite thing... and next thing you know they set up a family meeting and wanted to discharge her home. It was never something I was comfortable doing and no one even involved me in the decision, even though I’m the one who actually is going to be the one doing it. I wish he hadn’t said anything because I feel that’s what made this plan come into action. I had continually been in support of long term care since the beginning because I feel it is the right thing.
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Why does your DAD have anything to say about this?

Call the head of this "team and tell her/him in advance of this weeting that you are performing no care tasks.
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Rosebud33 Feb 2023
I don’t know they just seem to respect him more and don’t really seem to value anything I say due to my mental illness, they would rather talk to him. I understand that to an extent because I do suck at communicating sometimes, but when it comes to something like this you think they would talk to the person who they want to be the caregiver about the decision before going forward with a discharge. They just took my dads word, which wasn’t even saying that was something we were definitely going to do... he just said it was an option and suddenly it became that was our only option. Wish he hadn’t said it. He also told them I’m not working, which is because I’m currently seeking therapy and trying to get better so I can face the world and become a productive member of society. They used that against me too at the meeting, basically you aren’t working so you might as well take on this responsibility. Honestly I struggle to take care of myself, my cat, my moms dog who I took in while she’s in the hospital, my bf and dad who also has his set of issues... I don’t know how I’m going to care for someone 24/7 that needs a lot more help than I’m probably even capable of providing.
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On what ****ing planet is this your father's decision to make? Who the heck asked him?

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.
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Rosebud33 Feb 2023
exactly! I agree so much with this. Especially since the way she treated my dad and I before this was horrible, and she basically abandoned me for her crappy boyfriends since I was 10 years old. It’s a lot to take on for someone who has been involved in your life and showed they cared for you, let alone someone who abandoned you and is only nice to you now because they want something out of you. I couldn’t agree more with what you said. It’s so frustrating... because they don’t respect my opinion enough to even talk to me about it. It seems everyone tried to make the decision for me and pressure me into something I was never in agreement with from the beginning
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Rosebud, as stressful as this whole situation is for you I think it could actually be a blessing in disguise! You have a chance here, should you choose to accept it, to take charge of your own life. You can decide to say no even if people are unhappy with you. You can prioritize your mental health and healing. You can start making plans for possibly pursuing additional education or employment opportunities. You can consider whether you might be able to eventually move out from dad's place to a place of your own or with a compatible roommate. Etc., etc. etc.!

I think this is a great opportunity and starting point for you. Good luck!
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Rosebud33 Feb 2023
That’s exactly what my half sister said! She was the only one who was supportive of my choice. She said take this as motivation to better your life. I couldn’t agree more Snoopy, thank you for your reply!!
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Rosebud, your family thinks home care is an option because it's not themselves they are trying to force into slavery. No! It is a complete sentence.

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
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Rosebud33 Feb 2023
Solid advice. That’s exactly how it felt. The whole meeting was about how great she is doing... her physical condition hasn’t made much improvements since the beginning... her mental condition has gotten a little bit better since she can at least remember some things, but she still is very confused and can’t do regular things. She needs help emotionally and physically that I don’t think I’m able to provide. I also should mention she occasionally gets very delusional and thinks that I was a witness to a m*rder and would insist I go to the police about it... so I’m actually afraid she will get like that and start demanding crazy things or attack me over it because she got pretty nasty with me. She was having very violent delusions as well that have subsided a bit but I’m terrified they will come back. I will not allow myself to get bullied into this! It’s an unsafe situation for everyone. Thanks so much for your support!
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"Before accepting a diagnosis of mental illness, check and make sure you're not simply surrounded by a$$holes".

That's a bit of wisdom that I'm sure I'm mis-quoting...but it sure sounds like it might apply here.
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Rosebud33 Feb 2023
That definitely applies to the situation! I have agoraphobia, depression, social anxiety, and borderline personality disorder... but I think a lot of that stemmed from my crazy upbringing. It was just never normal.... so let’s just say I’m a late bloomer to adulting properly.. lol
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Rosebud, agree that you are an awful daughter. Say that you don't care for any of them, ha ha. Let them choke on that! It stops the argument.
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Rosebud33 Feb 2023
😂😂 that’s the perfect answer, because this is honestly madness! It’s not good for me or my mom, I can’t believe the hospital even suggested it.
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No. Non.

That's it. No reasons. Just no, I cannot provide the care my Mother needs. Another solution needs to be found.
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Rosebud33 Feb 2023
thats why I wanted to come to this forum, I wanted to see if it was as insane as I thought it was! I couldn’t believe it when they told me they wanted to discharge her on Wednesday. I wanted to see if it was as unrealistic as I thought it was, and that was confirmed by this forum. Your answers have given me so much comfort, I needed this support thank you!
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Simply tell them “No”. You cannot safely or physically care for her. There is no guilt is saying No to something that is not even possible.
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Rosebud33 Feb 2023
I agree Dianne, and that is exactly what I will do! Hope it turns out okay for my mom, I don’t want her in some facility a million miles away! Still want to be there to support her
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I’m so sorry that you are facing this nightmare. My care meeting at my mom’s rehab went very well. I would have been horribly disappointed had I run into a situation like yours.

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.
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Rosebud33 Feb 2023
I’m so glad to hear your mom made a lot of progress in rehab and is getting the support she needs! I can only pray the same happens with my mom, this is definitely a nightmare... just not knowing what will happen to her if I say no is terrifying. I hope the waiting list isn’t really a year long because in that case, I have no idea what to do.

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
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Rosebud, you are female right?

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)
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Rosebud33 Feb 2023
Yes I am!

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!
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Could you get the Doctor who diagnosed you with your illness to write a letter and email/fax it to you saying that in no way could you take care of this woman with your illness and physical problems.

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.
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Rosebud33 Feb 2023
JoAnn,

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.
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Rosebud, here's another slightly different angle.

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.
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Rosebud33 Feb 2023
They are expecting the impossible out of me! And I’m so glad I had you guys to talk me out of this.. I feel much more confident I’m making the right choice now. Thank you!
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DO NOT LET THEM BULLY YOU! YOU ARE NOT LEGALLY RESPONSIBLE FOR HER AND MUST REFUSE TO TAKE HER HOME! IT IS UP TO THE HOSPITAL TO FIND HER A SUITABLE PLACEMENT.
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Rosebud33 Feb 2023
I promise I won’t! I’ll be standing my ground tomorrow when I talk to them! It’s the only option. The fact they even suggested this is literally insane in my opinion
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Rosebud - I am so GLAD you found this forum BEFORE you were forced to give up your life. If you think saying NO right now is hard, it would be 100 times harder to undo the "yes".

DO take the good advice given here. Keep coming back for support as you travel this hard road.
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Rosebud33 Feb 2023
I’m so glad too! This was way too tough of a decision to make on my own without the support of people who understand what it’s like. Thank you all for taking the time to help me 💗
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Rosebud, I also am so glad that you found us! And now you must keep us updated on what happens tomorrow when you tell them you will NOT be her caregiver.

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?
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Rosebud33 Feb 2023
I am so glad too, it made me feel a lot more confident that I was making the right decision. It’s really the rehab facility that’s in the wrong here...

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
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A doctor told me awhile back…”first issue at home go to the ER…then refuse to take her home..they will find a nursing home for her”. Might work…Our plan for our moms next infection with increased permanent dementia..
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CTTN55 Feb 2023
Are you suggesting this for Rosebud? Because she's beyond that point now -- she shouldn't agree to be the 24-7-365 caregiving slave.
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Refuse to take her home as it is not equipped for her needs., thus not safe. They cannot force you to take her. Please, find your own apartment to safeguard your independence and sanity.
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Who cares what your aunt or third cousin once removed thinks about you. Do they factor into your daily life? If not, they are a non-issue. I had a cousin who tried to force her opinion on my father's care. She lived in Arizonia while we were in New Jersey. Unless she was offering to give my father a ride to a doctor appointment, her input was unnecessary, unhelpful and unwanted.
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Rosebud33 Feb 2023
Other than her trying to manipulate my mom into giving her money I could honestly care less what she thinks. She hasn’t been in our lives since I was literally 12 lol
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Stay strong, Rosebud

We are all pulling for you! You’ve got this.
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Rosebud33 Feb 2023
Thank you for your support!
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You cousin is deluded if she thinks your mom will have any money to leave to her after years of elder care. Of course that may be the motive in insisting you do the caregiving, save the inheritance. :)
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Rosebud33 Feb 2023
That’s what I’m thinking! She has a big house and 2 trucks, 2 kids, and 3 dogs and her and her husband don’t work so she’s looking for money. I would say she is 100% delusional
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Be a zombie and just repeat over and over, "She has nowhere to go and no one to care for her."

(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...
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Beatty Feb 2023
I LOVE this!
Awful, but it is the plain honest truth.
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