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!

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If you’re feeling resentful imagine how the rest of your family is feeling having to isolate themselves to get a moments peace. This living arrangement isn’t good or sustainable for anyone. It’ll cause you health issues. Mom should live in a place with activities and friends. You should live in your own home with your family. I hope you’ll decide it’s time to change this
Helpful Answer (22)

Welcome to the forum! I'm sorry you are living under such awful circumstances; I can truly understand why you can't stand to go home after work! Your mother's stubborn refusal to make you and your family feel welcome in her home is making your lives there insufferable.

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.
Helpful Answer (21)
Slartibartfast Nov 2021
And without a home of your own, once you've spent all your money on her and she has to go into a residential home she'll have to sell her house to pay for it and you'll be left homeless and broke.

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.
Helpful Answer (19)

Marm, welcome!

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.
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Your problem is that this is your mother's house, and it is not reasonable to expect her to shut herself away in her bedroom so that she doesn't intrude on the family.

What's become of your own house? Have you still got it?
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One thing I knew for certain, that as soon as my dad moved in, he was now part of the nuclear family and would want to be included in everything. Which is completely understandable but, for me not a tolerable situation. I can't imagine what he would have expected had I moved into his house. Not that that would have ever happened, I have been on my own far to long to bow to parental authority. And I believe in my house, my rules.

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.
Helpful Answer (12)
my2cents Nov 2021
Well, I missed the part about one of the children having small children of their own.
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You need to speak to a dementia specialist or/and an elder lawyer for sound advice before you end up penniless, divorced and hated by your children. I’m not trying to sound harsh but the dementia will get worse not better and you and your family deserve a nice life of your own. Your mom has had her life and now it’s time for Medicaid or her own resources to kick in best wishes to you 💜
Helpful Answer (10)

MOVE AND MOVE HER WITH YOU IF NECESSARY. There is no other solution to this problem.

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.
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BurntCaregiver Nov 2021

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.
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Marmstrong, As you can see, a lot of people don't read your profile AND your post to get a clear understanding of everything going on. It sounds to me like you made this sacrifice because you were helping to pay for your mom's expenses and your own. I totally understand why you would want to have some family time to just watch a movie. An elder like this has the attention span of a gnat, and usually wants to control the TV. That equals nobody being able to watch anything.

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.
Helpful Answer (10)
PatsyN Nov 2021
Too many times the comments here are as unhelpful and judgmental as FB. ❤
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Wow, quite the mixed bag of responses here. I have to say I'm surprised because this site is mostly positive and supportive, and people really seem to have their knickers in a twist over this issue.
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.
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PaulBern Nov 2021
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