Mom 78 fell back in Jan 2019, was very sick which I am sure was Covid, they just weren't testing for it then. She stayed 8 months in nursing homes where they did diagnose her with Dementia. We moved in to her home because it was most cost effective. I was paying my mortgage, had taken over her bills and home, and nursing home at $3700 a month alone was killing us. The medicines were keeping her down and confused til a NP took her off all of them and she was so much better. She begged to come home so we did bring her home. Now I live with my husband of 20 years, my mother and my 2 children 18 and 22. There is not a separate living space for her. She stays in the living room from the time she wakes up till she goes to bed at night. Will not go to her room to give our family any privacy. She thinks that since it's her home she deserves to stay in her chair. And dare I mentioned to paint or redo anything in the house she gets mad and quits speaking to me. She is also depressed and sits all day and eats.
I just want to somehow live under one roof. I have tried asking her to let my family have some time to watch a movie in the living room together but she won't. So my whole family resorts to going to their rooms and closing the doors so they can get some privacy. My family has never had to do this. It's so hard and I do feel guilt and resentment towards her. I would like to hear your advise, tips of what you have done to cope with this. Thank you and Happy Thanksgiving!
I'd like to start by saying that you shouldn't be paying your mom's bills! Mom should pay her own way. HER resources should be paying for any facility or nursing care she needs.
Have you looked into getting mom qualified for Medicaid?
Living as you are right now sounds like a very unhappy and stressful situation for you all. No healthy, not sustainable.
Meanwhile, if mom has dementia, you can't reason with her.
You need to start putting your family first. Start out by calling the local Area Agency on Aging. Ask for a needs assessment and case management services for mom. Maybe you need to consult an eldercare attorney to figure out how to disentangle your finances and get mom set up to pay her own expenses so you all can go back to living your lives.
I think you have no other alternative but to move out, personally. Your mother is 77 years old and can live another 2 decades, in reality. Do you want to live like this? In reality, her house can be sold so SHE can afford to pay for care of some kind in either Assisted Living or Skilled Nursing; you should never pay out of your own pocket to fund HER life as an elder. You should also not be held hostage in her home by her rigid rules where nobody can even watch a movie together in the living room! It's ridiculous and I'd put an end to it immediately if it were me.
Once you move out, mother can hire in-home help or look into selling the house and moving into managed care. You and your husband & children are not responsible to be her caregivers and personal servants for life. Look at it as you were doing this TEMPORARILY to help her recuperate; she recuperated, and now you 4 move on with your lives.
I know you are asking how to 'somehow live together under one roof' but unless your mother does a complete turn-around with her selfish all-about-me rules that she's put in place, I just don't see it happening. You all deserve a better life than what she is offering you.
Best of luck realizing that to make in-home care work, it has to work for EVERYONE involved, not just mom. Your family comes first, and it's perfectly fine to know that.
I think you have done what many have done - tried to have love & togetherness save the day. Caring led you to take the action of temporarily moving in but It didn't turn out as planned. That's ok - it happens!
A least now you know - really know.
Time for a new care plan. That suits ALL of you, not just Mom.
As others have said, do not pay ANY of her bills. Especially for her to be in a nursing home.
I would start looking for a place for you and your family to move into ASAP. Figure out what mom's needs are and arrange for it. If she can't be alone, start having her pay for aides to come in so that you and your family can go out to dinner, go to the movies, go on vacation, etc. etc.
Why in the world would you think that your mother would allow herself to be relegated to her own room in her “most cost effective” house so you can watch TV with your husband and kids? Your mother isn’t hurting anyone by sitting all day in her own living room. You are sending a message that you are doing your mother some kind of favor by living there. What part of the bills are you and your family paying out of your own pocket while living in your mother’s house?
I agree with others that this situation is untenable and you and your husband need to get back to your own home, especially if you are still paying the mortgage on it. Or buy a different house in which you mother will have her own space. If she’s only 78, she could live a lot longer.
Actually, the poster is in fact doing her mother a favor by living with her. A very big favor indeed because the mother has dementia and would be in a nursing home if her daughter wasn't there.
She made no arrangements for care in her 'golden years' so her daughter had to take on the responsibility of it.
Now everyone here in this group knows that I speak plainly and it can come off as harsh. It's never my attention to, but I'll say plainly that you've got some nerve posting such a response. It's not about how much of a percentage the daughter and her family pay towards the household bills. Since the daughter is an unpaid 24-hour live-in caregiver to her mother, does she write up a check (gratuity included) and put it next to the plate every time the mother eats a meal she prepared and cleaned up after?
Does she submit a weekly bill for cleaning and laundry services provided for mom?
Does she charge for mileage when she has to run errands for her mother or take her somewhere like a doctor's appointment, etc...?
Does the daughter receive payment for being an entertainer? Oh yes, when you're a senior caregiver keeping them entertained and alleviating their boredom helps prevent some of the fight instigating, trouble causing, and complaining seniors often engage in for entertainment.
Does the daughter or any other in her kind of situation, get a small weekly compensation for being a family scapegoat and whipping post to the elder they care for?
If the answer to all of these questions is 'no' then the mother is the one benefitting. Mom is getting one sweet deal in exchange for her daughter and family being there. See, in a nursing home or AL a person pays for every service and everything they get. Nothing for free. When homecare comes, that's paid too. There's also no staff who act as whipping posts to take your frustrations out on. No staff to instigate fights with for your entertainment. If someone acts up too much, they get drugged to keep them calm. Also, when an elder is in a nursing home, or AL, or any other paid care facility, they have no property or money to lord over their family so they submit to the slavery and abuse that is so often what caring for the elderly is.
Mom is getting a very sweet deal here and should treat her daughter and family better.
What's become of your own house? Have you still got it?
I know that you guys are "caring" for her. You don't say how and a fall doesn't mean someone needs looking after but, an 8 month stay at a NH says 24/7 care required, with some skilled nursing care involved. You said she improved being removed from to many meds. So? How much care does she realistically need? Can she afford to have someone come in daily to provide the help she needs?
The sad part is, it is her house and you all moved in. That doesn't change the fact that she is the mistress of the house and we all know that a house can have only one. She will never give that up as long as it is her house.
What I don't really understand is why she can't be included in a movie or family time. You say she does nothing, so how does that really adversely effect the time you spend with your adult children all living at grandma's house?
My lands, I would be a raving loonie if 4 adults moved in to my home and wanted me to go sit alone in my bedroom. Not likely to happen. I would rather be in a facility then lose my home as I sat in it.
Looks like it is time to rethink the situation and either create a family space in someone's bedroom, include grandma or move out and let her survive or end up in a facility. You can still help her, with boundaries, of course.
Edit: whichever one of your kids that has created 3 children needs to put their big boy panties on and create a home for their children. Because you no longer get to live off of anybody when you make babies. You man up and take care of your kids.
You are expecting an awful lot from your mom and I think you should suck it up and let her live in her house, especially since your adult children are bringing their 3 babies, under 4, every other weekend, that's a lot to ask of anyone, especially a sick senior.
The thing is, you made the decision to move into her home because it was cost effective for you, and now you've run up against some common issues with dementia, and are frustrated. Understanding that the disease progresses, I suggest you read up on this to help you understand that your mother's having some challenges that are more than just memory:
http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf
Realistically, the best thing for you to do is to sell the house and use that and mom's SS to fund her move into assisted living/memory care. When that's spent down she'll have to go on medicaid. It helps if you can find a place that will let her stay on after her private pay money runs out. I'm assuming that the house is in her name and is paid off. The property should be used according to her wishes unless she is incompetent and a POA is activated. Even then, the house is a resource to be managed to fund her care. Careful record keeping and not intertwining your family monies with hers helps when medicaid does a 5-year look back. How are the finances set up? Are you making sure her bills are paid by her monies? Is any of her social security being used for upkeep? Is your family paying fair market rent? What are you providing for her in exchange for moving into the home? Is this formalized by a contract? Are you really intending to keep her in her home as her needs increase--how will you and your husband manage that, assuming the kids are out of the house or busy with lives of their own? Have you talksed to a certified elder law attorney (ELCA) to help you navigate this? It might be very helpful to do this ASAP. This can come from your mother's funds.
If your mother has dementia, she may not recognize her needs. She sees that you have moved into her home, which is familiar to her (and familiarity and routine are key in orienting a person with dementia throughout the day). you want to redecorate her home and its management and pace has been taken over by your family. She's being expected to live on your terms. She doesn't want to. You find this untenable. She is incapable of using reason, logic, intuition, empathy because of her disease.
Actually a POA is required to act on behalf of the individual, as they would themselves, if they were able and of sound mind. A POA do not give the authority to press your will on the individual represented.
So her home is hers and gets used as she wishes, until a judge says she is incompetent to run her own show.
Your mom's financial means and what you were paying leave questions for me. If she was living in her home, prior to illness, and paying her own way - why did you have to start paying her house bills? Did she have her own income, such as social security, to manage back then? If she/you owed $3700 per month for NH care, it indicates her income was too much for Medicaid but not quite enough to cover the cost of her room. Did you talk with an elder attorney about how to cover the cost of her NH? (There are trusts that can be set up to put some of her money into while the balance pays a portion of the NH, Medicaid pays the rest).
You also said she was diagnosed with dementia while she was in the NH. Then said you found her meds were creating confusion and those were stopped. She may have some normal aging issues, but if removing the meds helped fix confusion issues, it's very likely you aren't dealing with real dementia. You're just dealing with an old lady who got to go back to her home and another family came along. She wants to sit in her living room like she always did and now there's a few more people also in the living room. She might like her house the way it is and, at her age, not particularly fond of change - so not interested in a new paint job.
Maybe the kids really didn't want to move there and they are acting just a little resentful in regard to grandma.....and perhaps you. Maybe that's what changed some of the family dynamics
This is her house first. Not your inheritance. Get your family out, and tell your children you will no longer be sustaining or "helping." It's 2021 and those children they had were a choice that they must take care of now.
The 3 grand babies only visit every other weekend.
I would imagine they stay in the same home with the mother who has dementia to provide needed assistance to her. So it is a give and take type of situation..... they provide assistance to the mother, and are asking for a way to give them some time together. It would be harder for them to take care of the mother in a separate location if they were to move out.
At any rate, her request is how to help make the current situation work. Helpful responses are what she is looking for.
I know how I would feel if my kids told me to leave my living area and favorite chair so they could watch a movie together. People do not even do this to the family dog.
Kids 18 & 22 - are they paying rent? How are they contributing to family now that they are adult men?
Nursing homes are horrific places. They should be destroyed.
Perhaps your family should shift gears and think about how she feels and what you can do for her to make her remaining years as comfortable as possible. Step outside your own inconvenience.
And remember, you are training your 2 sons how to treat you in your final years.
Uh-uh.
Sorry OP, but at this point your parent needs servants. Not supporting your children's kids and NOT putting these kids in the position of having to clean up feces or anything like that. If it's already to that level, the kids need to be removed. The parents too. Why do you have them living with your MOM and saying SHE should go to her room? They need their OWN room paid for by their parents. Not you. Especially not your mom.
It validated, for me, how important it is to still prioritize one's own nuclear family's time, even as we welcome and work to integrate the loved one we're caring for.
In my situation, my father lives with us in our home and spends a fair bit of time napping in his room. We have to catch as catch can with our family time, but this morning I woke thinking, just because Dad is in our physical space most of the time does not mean I have to occupy a daughter role for all of that time. I can also inhabit the role of mother, and wife, with Dad nearby. It's only a mind shift, but I already feel lighter remembering it. I will add that this is possible, too, because Dad can still walk on his own, and get to the bathroom on his own.
I understand your willingness to make a full-hearted change to serve your mother better, but also see that there may be a compromise here that could satisfy your urge to care for her lovingly, while also checking more boxes for your sanity and that of your own family. Best wishes!
Yes.
“…it's *her* home…”
And that is the total of it.
Flip this around. You are uninvited guests imposing on her in her own home, and making demands of her, demanding she stay out of your family’s way and submit to you altering *her home* to your tastes.
From your description, you moved in and lived in her house without her for months. You are effectively squatters taking advantage of her resources. She is not responsible for supporting you, just as you are not responsible for financially supporting her. You don’t own your mother’s resources, which includes her house. You should not have taken over her bills. You should not have taken over her home to save yourself money. You have created a very unpleasant tangle for your family by committing a series of bad choices.
That you want to create one big, happy, family together in one home is very admirable of you. I am sorry it isn’t working out.
Some people posting here are questioning the fact that you moved 3 grandchildren in too, but fail to realize you said they only come every other weekend. You also said you did this because it appeared like your mom was dying, and it was only after 8 months she was able to come home. You saved her home, correct?
I'm sorry you just got a lot of judging by people who assumed you are being selfish. As someone who has gotten kicked in the teeth for helping people, I understand your pain. It may be that the only resolution will be to move out and let her handle her home alone, whether she can or not. Sometimes it takes a hard dose of reality.
First, I would like to say that I'm sure you're doing your best, and that at the end of the day the judgement of others, particularly since they don't live your life every day and they don't know every detail of your circumstances, should not bother you. You wouldn't be conflicted about what to do if you were a bad person, you would just do what you wanted and say to Hell with the consequences.
Out of curiosity, would it be possible to put a TV in your mom's room and then go there with your family to watch a movie? I mean, if she doesn't want to move from the living room that is technically her choice, but if her room was big enough for you guys to sit in there you could always move a TV in there and use that room while she uses the living room. I kind of understand what you're going through a little, my mom and I live together in a two bedroom apartment and sometimes when the weather is bad and I just want to watch a movie or whatever that I know mom won't like it's hard to get her out of her chair. My go-to is taking the movie and playing it on my computer, but everyone has different ways of making it work. Maybe pick the next largest room in the house, move a TV in there and have that as like a backup living room so you guys can watch a movie there? Might not work, but it's a thought anyways.
I don't think you or your family are selfish or wrong at all for wanting a little privacy or a sense of control over your lives. I mean, people who judge too harshly on this kind of stuff are clearly people who haven't had to go through it. When you upend and rearrange your entire life to accommodate and care for someone else, you crave that measure of control and normalcy just so you can keep your sanity and make the days feel less chaotic. Besides, nearly every youtube video and website I've googled about caregiving stress and burnout actually ADVISES being 'selfish' as a way to survive, because if you aren't you get sucked into being too subservient and too submissive and often it leads to the care recipient assuming that they can walk all over you now. Putting up boundaries and making reasonable requests is perfectly normal and healthy and anyone who doesn't understand that can take a long walk off a short pier.
So I hope this helps at least a little, like I said I don't know every particular detail about your situation (and in fact no one does except for you which is why all of the judgmental responses surprise me) but just keep on doing the good job that you're doing, carve out time for yourself and your family any way you can, and know that you are not being selfish (in the bad way) or unreasonable or anything like that, you are simply rearranging finances and dynamics to try to take care of your mom and keep her out of a nursing home like she wanted. God bless.
Best of Luck! You can do this!
They should start exploring care options.