This sounds really horrible, but I don't want my mom to come home for hospice care. I know it's absolutely going to destroy me, seeing her hour after hour in her state. She has dementia and I don't even think she will be that aware of her surroundings at this point, but my siblings are pushing for this as of earlier today. Of course they're going to force the decision on me since it's my mother's house, but I am tapped out emotionally and physically from the 3 years that I cared for her before she had to go into long-term care. I also have trouble with having strangers in my house or even siblings coming by at whatever hours. I am an introvert and not being able to have any time to myself is going to take a drastic toll on my health. Has anybody else gone through this?
First, it depends a lot on ‘how long’. You can cope with most things for a week (or two), but some hospice is much too long to push yourself so far.
Second, if it does happen, get each sibling to come for at least a planned overnight. My sister did that for me, and it let me go away for a weekend that was a life saver. ‘Dropping in’ is worse than no support at all – you end up being the host, the explainer, reliving for them all the bad bits that have happened in the last few hours or days. Insist that they only come when planned, and at least long enough for you to go away. Just leave clean sheets out – they can remake their own bed.
How can you put a time limit on this? ‘I’ll do it for 2 weeks, after that you must either take her, move in here for 2 weeks while I leave, or arrange for her to return to care.’ Put your foot down!
I never felt that the impact of caregiving, hands on type care was well explained, nor the process if there were any issues or concerns. I also find the aides visits daily somewhat disruptive, personally speaking....and I have used space here to vent about my dissatisfaction with how their tasks were done HOWEVER, I have learned a great deal, I would ask specifically about my how concerns are handled prior to the start, I still don't have a handle on what exactly mom should be getting as far as say a wheelchair/lift or if either are appropriate for her. And yes, I do have concerns that one of the aides has taken something of low value, which concerns me of that sort of personality being in my home, but all that said, I am grateful....they have been reliable even if tardy from time to time, they seemed to have tried to improve their behavior after someone in authority must have spoken to them...this was in regard to not being sensitive to my mom's feelings...demented or not I felt her privacy concerns she still managed to convey were not being as respected as they should have been. SO I have learned one should speak up immediately if you see something happening you don't like. As in PLEASE wipe your shoes when you come in; PLEASE don't put a drippy basin on the antique wooden desktop etc. Hopefully the pattern will settle in such a way that the visits will be on a predictable day and/or time and they will let you know in advance...but it sort of feels like THEY have control. I would imagine one could lay some ground rules about not before X AM . Rest assured THEY have a schedule and other people to tend to and they will not be presenet any longer then they have to be. SO you are likely to still have much of the day to call your own, it just may interrupt your routine. DO make sure you understand the expectations of your providing care and make it known if you have health issues of your own that could be impacted. For instance mom developed some wounds (i.e. bed sores) on the bottom heels of her feet...which im humble opinion I think should have been spotted by the aides or someone...it was a home visiting MD that spotted the issue when we saw a stain on the bottom sheet. I made it clear that I was not up to the challenge and that if the current aides were assigned that task of bandage changes, I would be requesting others or changing agencies. I did not feel up to the challenge myself, although I knew I couldn't do it with any less compassion/empathy than what I had observed in the routine personal care the aides were providing. AND THAT is a very big thing we are appreciative of, as mom would not allow us to tend to that type of care and it is clearly much needed based on her incontinence issues. In the very beginning they made me feel we'd need to find some private hire help to supplement their care and that really was a challenge to contemplate as well. Private hire is typically in the $20/hr minimum range and they now often have 4 hour minimums. Although we didn't pursue it, it would be nice if they had aides working longer shifts so help could come more often to assist, but I know we are blessed to have what we do and that thus far it is working. I would guess that your mom may not want you watching her all the time, so you can go off; she may be comforted by you and her surroundg
If she needsx24/7 care now, how will that be managed and paid for at home?
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?
Asure them that if they send her home, you'll be staying in your room with the door shut.
I know everybody says that "they would never sue family", but sometimes when people are grieving, they change their tune.
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.
And it's NOT going to fall all on me.
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!
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.
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.
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.
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.
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.
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.
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.
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.
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.
I just hope I can get my sister to listen to this.
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.
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.
Stand strong and say "no". This is a bad idea--mostly for your mom.
I agree about it being a bad idea all around.
If she is unable to get out of her home in a fire, that's an "unsafe discharge". Please use those words.
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
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.
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.
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!
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.
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.