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This is very difficult and my heart cries out for you. She will think she is in a hospital anyways with the hospital bed, the nurses, aids, masseusse, Chaplain, musicians coming every day. They will just walk right in and your home will not even seem like home to you! Eventually she will be moved to a nursing home, there is no way you can care for her. My expierence was being woke every 2 hours then having to call my Nephews to carry her to the potty chair-i'm disabled. After being wore down to a frazzle she will tell Nurses we didnt give her food, called me my Fathers name . BUT I wouldnt trade those last days for anything now that she is gone. Remember its her home she has the right to live every day she can there but only you can decide if you cant do the work involved. I would try tho, if you dont it will haunt you forever. If you can't do it like we found out there is no shame in that. Ignore your sibs, they wont get it unless they walked in your shoes those hundreds of days. The workers have a right to walk right in, they will become family, after all they will be changing diapers etc. Prayers you are givin the strength and fortitude to accept the challenges ahead. Repitition is key-- i had to tell her a million times she is at home, not in a hospital, she already ate etc etc. The hospice folks are great! They will help you deal with the end stage, tc
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TaylorUK Aug 2021
You are not an introvert in the way the author is and prayer is not going to change her difficulties. One of the problems people who are like the author have is that people like you who can cope with change think she can change - approx 1% of the population have different personalities which are like the author and unchangeable - some like to think it a disability because then they can think there is a treatment, but it isn't. People are just different and as someone who has done her best and knows where her boundaries are she should be able to have this respected and not be told "it will be OK" when in all probability it won't for her own health.
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yes three times now and every time it was a good experence they are wonderful people and they will keep her sadated its not so bad of corse no one wants a loved one to suffer and watch them go but it is a fact of life. so pull your sholders back take a deep breath if hospice is comming in then the end is very near it want be long now and these people are angles. lot of places have hospice houses that they can go to in the last week or so ask them when they come.
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Is it possible they are trying to preserve an inheritance? If she is being well cared for now why bring her home. I know it is easier than is sounds but just say no! Tell them they are free to bring her to their house.
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yankeetooter Aug 2021
Well, I don't see how bringing her home would preserve any inheritance. The house is protected since I was her caregiver for more than 2 years. In Maryland that's the amount of time that you have to have been a caregiver for. But she would need 24-hour care if she came home and that would probably be more expensive than what she gets in the nursing home now, so bringing her home will not cut expenses and either way she would have to go on Medicaid.
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Many questions...

How far along is the dementia? If she is unaware of where she is in a long term care setting, she can get Hospice there. No need to take her home. Moving her at this stage would be more disruptive to her as 'home' would now be unfamiliar. Call Hospice for an evaluation at the facility. You do NOT need the permission of the facility to do this. I wouldn't tell them ahead of time you plan to do this.

Could the siblings be coming from a place of guilt for having left you to do all of mom's care for so long? If so, that is their burden and not one you need to accept on their behalf.

Time to take care of you.
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yankeetooter Aug 2021
She is becoming less and less aware of everything by the day. I don't think coming home would really mean that much to her. And at one point my sister mentioned that at least she could see my cats one more time, because she really just loved them after I moved in. But my cats are not social at all. And I told my sister that with all sorts of people traipsing through the house, even with just siblings there, they would probably spend their days hiding under the bed upstairs. So my mom would never get to see them anyway. And that will probably make her all the sadder.
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It’s a difficult decision- and I’m doing exactly that with my dad- giving him this gift is exactly that a gift- I have come to love our ladies/ the nurse/ and care management/respite nurse and the volunteers to help- HOSPICE AND DNR’s do Not mean - do not treat- if u can accept their decision and love them, and drop your own selfishness (no one wants to “watch” - which is super hard- I am dealing with it too - good luck and whatever u decide- it will be the right decision
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TaylorUK Aug 2021
It is very patronising to tell someone who has a different personality to yourself that she is being selfish. If it will harm her own health then that has to be considered. I am disappointed but not at all shocked by how many posting here think the author can "just change / just adapt", it shows a level of ignorance of a portion of the population who are constantly discriminated against for not fitting in with your world way of being. Wake up people - some of us cannot cope with the 99% of you who impose your world on us all the time and think we can just change to fit with you. The right decision for the author is the one she can cope with - giving her mother with dementia a move so she can die at home is not a gift it is purely a satisfaction of your own egos.
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I had an answer all ready to go and lost it before it got posted. So I will try to remember what I said.
1. F..k your sister and any other siblings. But especially the sister.
2. NO VISITORS without an appointment. If they are 15 minutes early, let them wait in the car until appointment time. If they are 15 minutes late, do NOT open the door. Let them make another appointment. I don't care hot far away they live.

I have a feeling they won't visit too much at all, but if and when they do, plan to leave if you want. Either go out for lunch, or go to your room and take a nap or just read or watch TV. THUS the reason for an APPOINTMENT. You understand?
There's more, but I'm tired. Just one more thing for now.
No one can FORCE you to anything. Got that? You are volunteering to do this or you're not. Take care of her with love and kindness. If you can't, do not do it. Just because she is your mother, she isn't your job or responsibility. God says to HONOR HER AS YOUR MOTHER. You don't have to love her, you don't have to care for her.
If you don't follow these rules you will feel guilty and angry. No need for that!
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yankeetooter Aug 2021
Thanks. I don't feel guilty at all, and I do love and care for my mom. But I know what I sacrificed for 3 years both in physical and emotional health. I know that I did more than my part and that my mom coming home wouldn't make much difference to her at this point anyway, based on where she's at with her mental awareness. And I know lots of people are saying that you will regret it if you don't do this for her, but the truth is, I have already kind of said goodbye to my mom. Maybe that sounds weird, so let me explain. That woman laying in the bed in the nursing home, well, she is my mom, but she is no longer my mom as I knew her. And I think I've spent the last 3 years saying goodbye to the mom I knew. Honestly, I know she is ready to go, and this will probably sound horrible if you're not a Christian, but at this point, knowing what Joy awaits her, knowing that she will see my dad again, who passed away in February, I pray everyday that if she's ready to go, that God will take her.

Years ago, when my mom's mother died, she was in a lot of pain. My grandmother actually died of cancer. And I remember my mom telling me that she was praying for her suffering to end, as sad as she was going to be when she died. And I kind of get that now.
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So why aren't your siblings offering to take her into their homes? You took care of her for 3 years. Where were they? Or did you take it on yourself? Just trying to get an idea of the situation.
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yankeetooter Aug 2021
I don't know why my brother couldn't because he has a decent sized house. But I do know that they have brought his wife's mother home to live with them because her husband died a couple years back and she would have been living by herself. Other than that, I think they like having the extra bedrooms when their two kids and their spouses come home from Texas to visit. I'm sure my brother would argue that he lives the furthest away of all of us too, which would make it harder for the rest of us to visit. My older sister's house is kind of small and I doubt her husband would go for that. My younger sister has a nice house, but she is so busy with her job, and her husband has some health problems so she is citing that as the reason why she couldn't take our mom in. But none of them hardly helped for those 3 years.
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Mom was in her house. I guess I thought that If I were her, I would rather pass at home in my favorite place— not in an unfamiliar room surrounded by people I don’t know. .

This is hard for anyone to endure, so hire help and take occasional breaks if you can - don’t just sleep duting breaks - “live” as much as possible on your breaks to help you make it through. Do nice things for yourself. Silly as it sounds, taking a few minutes to appreciate the sunset helped me tremendously. When a caretaker was there I also found relief in going to a movie (I was careful to pick a theme unrelated to the heartbreak at home, as I needed a complete emotional break from both the physically heavy working and the emotionally heavy grieving).

As for the visits by relatives, most of the family barely came around. Lots of family said they were planning on visiting, but cancelled. (They even said things like, I just can’t see mom like this — ?? And they said this to me??).

The cancellations made me sad, but at the same time, I dreaded “hosting” under the circumstances. Despite that dread, those who did show up turned out to be a great comfort-to both Mom and me. Although I thought maybe it would be better for Mom to be there alone, these kindest people were very much appreciated.

This is such a terrible time and regardless of where you choose for her, please take care of yourself when you can.

Take comfort in knowing that many of us have been through this.

This seems insurmountable, but you will get through. You will be okay.
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Lymie61 Aug 2021
I don’t think Mom is or was in her house actually. The way I read it Mom is in Long Term Care though it doesn’t say how long she has been there which changes things for me anyway.
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Your question makes no sense
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Hospice can come into the nursing home and care for your loved one . that is what Happened to my brother the last 12 days of his life . they didn't do much . took his blood pressure , looked at medications . I had to take care of my mother and brother for 2 years and was exhausted for 3 years after . I have been taking care of my Dad for 6 years . You need to get back your life and not be bullied .
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Given everything you wrote above, do NOT bring her home for hospice. it will harm you more and you should not deserve that. Keep her in a safe place and stand up to your family or tell them to make their home hospice. Be strong and tough. It is YOUR TURN NOW.
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Riley2166 Aug 2021
If not already done, speak with an eldercare attorney and have a POA or get guardianship - whatever - so YOU are protected.
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I would also ask Elder law Atty if house can be put in your name. Hugs 🤗
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Whatever Burnt Caregiver said I agree with…keep her where she is . Your mother can get hospice in nursing home if that’s what she needs. Hugs 🤗
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A member of this forum came up with a terrific description for people in a situation like yours.

Don't let yourself be 'Voluntold' that you have take care of mom if she returns from the nursing home.
If you are done with being a caregiver, then let that be the end of it. Absolutely refuse to continue with it.
Why are your siblings so adamant about mom going back to her house if she is out-of-it with dementia and won't even know that she's in her house? If she's already in hospice care that's paid for by Medicare and her secondary insurance, so it can't be because they want to protect assets or potential inheritance.
Seriously, why don't you ask them why they want her to leave the facility she's getting 24 hour professional care in, to return home to a person who cannot provide this for her.
Who has your mom's POA? I hope that it's you since you were her caregiver. If you do have it then there's no discussion. It will be your decision to keep her where she is.
If you don't and your siblings want her to go home, explain your situation to the nursing home she's in and tell them that you will not be available to care for her if she returns home.
Your siblings cannot just throw you out either. There will have to be an eviction process and you are also one of the heirs to your mom's property. This will take a long time so don't be too afraid of them.
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yankeetooter Aug 2021
They want to bring her home because then they figure they can visit her anytime they want, as opposed to having to make an appointment first. I am under the same rules, but I don't want them coming in whenever either. And Mom seems hardly cognizant of when we visit.
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You said that you do not want your mom to come home for hospice care, but you do not say where she is now. I assume she is in a Nursing Home. Obviously your mom has been away from her home for sometime. Therefore I would not bring her home. Just because she has dementia does not mean she will not know her surroundings, even if it is only sometimes. Let her stay where she has been.
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Whether your sister listens ot not is immaterial. You are putting the NH on notice that you are not doing this "job" and that your mom will be unattended for 12 hours a day.

If she is unable to get out of her home in a fire, that's an "unsafe discharge". Please use those words.
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Helenn Aug 2021
Totally agree .. nursing home has been her home for awhile .. your mother familiar with those surroundings … think that’s where she needs to be… bringing her home will be upsetting and traumatic for both of you… be firm with the nursing home and your siblings and your house will not provide a more peaceful ending … if anything will be chaotic.
it’s unbelievable how siblings on these posts who are drive-bys and bystanders suddenly wake up when end is near !!!! Be firm. Visit as often as you can !!! And feel confident you did as much as you could for her…
siblings cannot say same !!
take care
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YankeeTooter, 12 hours of care per day is going to cost your mom almost exactly what round the clock care in the NH will cost her.

Stand strong and say "no". This is a bad idea--mostly for your mom.
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yankeetooter Aug 2021
Yes, and from everything I've read, on here and elsewhere, she should actually get 24 hour care, so that would cost even more.

I agree about it being a bad idea all around.
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Please note my mother in law has been on hospice in nursing home for A YEAR AND A HALF with end stage Parkinson’s. It isn’t necessarily a short term move. If sister is willing to cover nights, more than 12 hour shifts, she can manage care by herself. And what if someone is late or no show? Just not a good idea.
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yankeetooter Aug 2021
Yes, exactly! Especially when winter comes and it's snowy and icy. And I have a heart condition, so I can't really clear the walks and usually work from home until the snow clears.

My sister will never be willing to cover the overnight shift. She has a husband that is on dialysis, etc. AND she works almost 80 hours a week at her job. Even if she said she could, it will never happen. I've been down that road before.
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I cared for my dad in his home on hospice. It was much harder physically and definitely emotionally than I could have known. I still feel privileged to have done it, but there are some aspects of it that still trouble me. There is one inpatient hospice facility where we live, it’s like a high end hotel in looks and the care has a stellar reputation. Maybe we should have chosen it, it wouldn’t have been my dad’s preference but it likely would have been far easier on us. Perhaps there’s an option like that in your area. Don’t do anything because of feeling pressure, it’s a hard road and no one should be compelled by others to take it all on. Wishing you and your mother calm and peace
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yankeetooter Aug 2021
Thank you. It hurts to say it, but I know my mother is ready to go. My dad passed last February, at which point they had been married almost 61 years! They are Christians, as am I, and I know my mom can't wait to be with him again.

When I go to see her at the home, especially more recently, she has declined so much. She barely interacts with us, and cannot really even articulate anymore, even when it is very obvious she is trying. Every time I leave after visiting, I am just devastated for the rest of the day after seeing her like this. I can't even imagine what seeing her every day for long periods would do to me.

And I have major health issues myself, so there's no way I can take on more physically than I am doing now. My A1C alone went up some five points the last few months my mom was at home, because I was eating at strange hours and no longer was as diligent about being careful with what I ate. Sounds awful, but I became so depressed for a while that while I still tried, I didn't care much about maintaining my own health.
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You sister "is" clueless. My Mom was in LTC for Dementia. There was no way I would have brought her home for Hospice care. I would have been responsible for her 24/7. Hospice will provide an aide maybe 3x a week for bathing. The Nurse will show up about that many times. You will be shown how to administer the morphine and other medications. You will be changing Mom while she is in a bed. And like you said, she will have no idea where she is or who anyone is. She will not only have Hospice care in the facility but when they are not present, the aides and nurses that she has known will be there caring for her.

Do not allow this to happen. Tell your sister if she wants Mom home then she needs to do the care. You did your sgare, your not doing it again.
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yankeetooter Aug 2021
I thought I replied to this, but maybe not. Yeah, my sister plans to hire an aide for twelve hours daily, but I feel like that wouldn't be enough. And I can't (and won't) do all the physical things you're mentioning; I have a heart condition and don't have a lot of physical strength.

I just hope I can get my sister to listen to this.
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I think there are so many things your siblings are overlooking and some not understand about hospice. So before any of you decide this I would suggest you all sit together with a hospice agency your siblings understand what parts they will be providing for care. Even having a social worker in on the meeting as well.

Now with that said - If my mom did end up being placed and I knew she only had a very, very small window of time left - I would try to do hospice, if possible I would bring her home and want my mom be in my home -surrounded by us all. She would want that (if possible) and I would actually want to do that with her. But that does not mean that was your moms wishes or what she would want.

Since I took mom home with me after her stroke I had to really push through (and still do) having strangers and people constantly in my home - so I do understand that - it IS hard to open our safe place and does come with anxiety.

I do not know anything about how much time your mom has left but I do think your siblings need to understand how much of moms care will lay upon them if they think this is what is best for her. They have to be prepared that will require them to be committed and proactive in part of caring for her. Hospice will not be there 12 hours a day - they will be. In shifts and a lot will be needed from them to actually make this peaceful and wonderful for your mom.

Hospice will be support for the family but the family is the one who is giving their loved one beautiful moments and the gift of time.

Hopefully you can all meet together with the agencies above and just make sure everyone is clear on what will be needed from each one of you so that a good decision is made for mom.
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yankeetooter Aug 2021
The fact is my family won't be there to help, if the past is any indication. And even now, I don't know if it's because I'm an introvert, or have social anxiety or whatever, but when I come home from some social event, even if it's with family or friends, it takes the rest of the day of being by myself (with cats) to recover. This would kill me. Even more so, because the aides would be strangers, and my family is often bullying or controlling toward me.
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Your sister's level of cluelessness is astounding. Hospice doesn't replace full-time care, it's in addition to it.

Your mother is in full-time care because she needs it. Hospice simply takes care of the medical side of her care while she's in place, and they focus on the quality of her life. They don't change diapers and feed someone.

If your mother doesn't require anything like wound care, you'll see a hospice nurse once or twice a week at most until she begins to transition.

Tell your sister that taking your mother home at this point is abuse, not making her more comfortable. Make it VERY clear.
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yankeetooter Aug 2021
I think my sister intends to use an outside agency for 12 hours of care daily, so it wouldn't be as if it was just the hospice care, but I'm still concerned. My mom has been incontinent for a while, and I can't imagine her laying in her waste and/or urine for 12 hours until the aide comes the next day. I am not strong enough to lift or roll my mom, so my doing it meanwhile wouldn't be possible. My sister's response to that is that they're probably not changing her overnight at the nursing home. (I don't even want to contemplate that, but I certainly don't think that's an acceptable excuse!)

She does have a worsening wound (from her being bedridden most of the day), so hopefully the hospice nurse would come out more often than once a week, but even when she was at home they would only come out 2-3 times a week. I know things are different when you're in hospice care, but I still don't want my mom getting a horrible infection.

Finally, I have real concerns that if she's in a more familiar surrounding, she might try to get up in the middle of the night and then fall. She's very weak now, and maybe the hospital bed railings would prevent that (I hope), but I would still be worried.
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From a post back in Jan 2020: "I am literally looking at applying for Section 8 housing because I don't know how much longer I can live in this situation."

Why didn't you end up doing this?

Where is your mother now?

You know your siblings are trying to bully you into at-home hospice. When your sister says there only needs to be someone there 12 hours/day, she is figuring on YOU being the caregiver for the other 12 hours. And, since you are always there, the other siblings will start missing their hours. And why not? YOU will be the backup caregiver, and I bet you will end up being the 24/7 caregiver before long. Believe it.

Keep us updated.
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yankeetooter Aug 2021
Yes, that was me back then. My mom was still at home but was very verbally abusive, and despite me knowing that it was the dementia speaking (and frequent UTI's, dehydration, etc.), she would get very personal, and it hurt a lot.

But then (maybe the next stage of dementia?), the verbal abuse pretty much stopped, and she became a lot more pliable. Maybe as she became physically weaker, she realized she did need my help? I don't know. And so I stopped thinking about moving out. Also, (and I verified this by researching it), my sister found out from the elder care lawyer that since I had been the caregiver for at least two years that Medicaid wouldn't be able to take the house, so that gave me more security.

My mom is now in long-term care, as she got so weak eventually that she couldn't even stand to get to the bathroom (or even for me to clean her up.) I have health issues, and I am simply not strong enough to hold her up and clean her up at the same time. (That would probably be hard for even a stronger person.) She also had a bedsore wound that wasn't healing due to her sitting most of the time. (She slept in her recliner chair, and had been for years.

I know (about the twelve hour thing), and after seeing a lot of responses on here, and doing some reading up elsewhere, I definitely am against this, and adamant that I am not going to care for her the other twelve hours. I plan to talk to the social worker at her place, but I am also waiting until we get the official assessment results from the doctor. I'm really hoping that they just recommend that she stay in the home, as it would prevent a lot of family friction, but I am prepared to make my case if it becomes necessary.
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I did not have a problem with Hospice coming into the house. I felt that my Husband was more comfortable at home and I was able to safely care for him. (physically and emotionally) And he was on Hospice for about 3 years.
If you do not think that you can handle caring for her with Hospice but your siblings want her "home" Hospice can care for her in any home so one of your siblings can care for her in their home.
But that leaves the question....you are living in moms house. What happens when she dies? Are you able to stay there or will you be asked to move if the house will be sold? I guess what I am getting at is if siblings want mom at her home whoever has POA can push this and ask you to leave if you will not care for mom so that others can come into the house and care for mom.

I saw in a reply to someone that your sister said that mom would be fine with someone there for 12 hours and she would be alright overnight alone.
I beg to differ on that. If mom can not get up and leave the house safely, can not call 911 for help if needed (a fall, fire, break in) then she needs someone there 24/7. There are people on Hospice that can live alone but that is not common.
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yankeetooter Aug 2021
As much as my family infuriate me sometimes, I don't think they would kick me out with no place to live. I both attend and work at two very supportive churches, with lots of people at both who care for me, and who wouldn't let me be out on the street.

Once my mom dies, we will have to figure out if as the caregiver for three+ years, I will be able to live there (allowed under those conditions by Medicaid.) In fact, I might have to live there for the required two years so that the house can't be taken by them. My mom hasn't had to go on Medicaid, but my dad did, and apparently, if it weren't for the caregiver situation (and this is in Maryland, so I can't speak for other states), they probably would take the house.

If we sell it, then the proceeds of the sale would be divided between us and I would have to use my portion to find a place to live. A scary prospect, but it's going to happen sooner or later.
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I would think that taking her out of long term care would do more harm than good. Change is not easy for anyone, especially the elderly. Stand your ground and say no. This is your home, your space, your emotional well-being. You need to protect that.
Know that you have an entire community right here behind you. Big hugs to you and good luck. Wish I were there to stand beside you and tell your sister no!
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yankeetooter Aug 2021
Well, the only caveat is that the house is in my mom's name, and with her no longer deemed competent to make decisions, my sister somehow took on that responsibility.

But as someone else on here said, I should stand my ground about not being her caregiver. They can gang up on me and force it to happen, but they can't force me to be the caregiver.
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You are very smart to realize that hospice at home is not a good idea for your emotional and physical well being. Home hospice is basically the family providing 80 to 90% of the care. I never recommend it.
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yankeetooter Aug 2021
Exactly, and I know the rest of my siblings won't be willing to help hardly at all. They all have families, my brother lives an hour away, my one sister is very mercenary and wants to be paid for everything, and my other sister works some 80 hours a week.

And it's NOT going to fall all on me.
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Please consider this- I am currently the youngest local survivor of my generation. My mother was the first sister of seven children, with two older brothers.

They were stoic to the point that revealing illness was consider among them to be weakness just short of conspiracy.

Months into my Godmother’s illness, at the age of 82, the information was shared with me. I was in my fifties, with two HS aged children.

By then she was desperately ill, still at home, and was being cared for by my youngest aunt. Both were single.

Too sick to leave the toilet and wash basin, my Godmother REFUSED HELP. Her sister grew more and more frail, more and more distressed, begging for help, no one knowing what to do.

The day came when one family in-law marched in, took over, and physically pulled her out of the house and to a hospital, where she was quickly diagnosed with metastatic cancer of the pancreas and liver.

After a brief hospital stay, the hospital moved to send her home. They told the “caregiver” sister she would need a hospital bed to be set up in the living room, in a small house 100 years old, with NO SANITARY FACILITIES ON THE FIRST FLOOR.

To her CREDIT, my (perpetual) caregiver aunt, after caring for her mother (severe dementia), her brother (advanced Parkinson’s), and then her sister, FINALLY said NO.

My Godmother was then placed in a residential hospice, where she died a few weeks after she was admitted.

I am now POA for my youngest aunt, the survivor. SHE REALIZED that SHE could be “destroyed” if she “brought her sister home”. As it was, she quickly developed shingles almost immediately after the funeral and suffered for years with the aftermath.

Do you have ANYONE on your side? You certainly do have ME.
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yankeetooter Aug 2021
Thank you. I will be talking to the social worker, and my boss even suggested I talk to the pastor at my mom's church to see if he will be an advocate.
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Yankee, one more thing. I don't see how your siblings can "force" you into caring for your mother, even if you reside in her home.

Asure them that if they send her home, you'll be staying in your room with the door shut.
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yankeetooter Aug 2021
I've already said as much to my sister, but my only question is if they would try to hold me liable if she then died when the aide wasn't there. I almost feel like I should have them sign something to the effect that they won't to protect me.

I know everybody says that "they would never sue family", but sometimes when people are grieving, they change their tune.
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Your sister sounds like an idiot. Please tell her that, from me.

Your mother already REQUIRES round the clock care, or she wouldn't be in a nursing home.

Is this about saving money?

Hospice at home means someone needs to be able to deliver comfort meds, like morphine. Aides can't do that. I could never, ever, ever have given my mom morphine.

Tell sis "no, I can't possibly take this on".

Has someone got Power of Attorney?
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yankeetooter Aug 2021
I don't no if it is officially power of attorney, but my sister signed something where she can make decisions for my mom when she was declared mentally unable to do so a few months ago, so I think that probably is about the same thing. And they're going to make the argument that it's Mom's house so that I don't have a choice.
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