How to cope as a new caregiver? I truly can't stand to go home after work.

I think it's wonderful that you are trying to help your mom but all of you are in an untenable position. I'm a recently retired nurse and for the first time in over 20 years, I don't have a family member living with me, and I hate to admit this because I loved them but I had forgotten what it was like to have any free time at all. I now have my own medical problems so have to now make that a priority. All of the posts make great points. However, one thing I would do if I were you is consult an elder attorney (or at least your county dept of social services). Many of them will talk with you over the phone for an initial free consultation. One thing they will say is don't spend your money on your mom unless money is not an issue. IF you decide to place mom in a facility, she has to spend her money down until she has very little left (usually about $2,000 depending on the state) before she can become potentially eligible for Medicaid. Any facility that accepts Medicaid cannot discriminate on the basis of payment source. Some will tell you that you have to pay the full price for 3 years, then they will accept Medicaid but this is actually against the law at least in my state. Any decent facility is going to cost a bundle. But home care is not cheap and it's difficult. I had to place one family member with advanced dementia in a facility because he was a very large man and he had broken his hip and leg in a fall from the sofa onto carpet. Even in the best facilities, you have to keep an eye on things. However, the cost to your family and you is also very high. It sounds obvious but you have to figure out a plan and have someone help you. Alot depends on what you WANT to do and CAN do. I will tell you this though..taking care of a dementia patient is way harder than taking care of someone who can cooperate. It's not your mom's fault or yours. You're in a bad situation. But you are going to be dealing with wandering, incontinence, mood swings, and alot of other things that she can't help....and think how she feels that she is in her own home but now it may not feel like it. Also, alot of elderly people with dementia (and even without) have medical problems and, e.g., sometimes they get urinary retention and have to be catheterized or they fall or...something else. Will someone be able to always be with her, be able to be flexible enough to take her to the doctor for planned and unplanned visits? On the other hand, it's only natural to want to be in your own home. It takes tremendous coordination and a united family to care for someone at home. I suggest you try making the living situation as bearable as possible for the near term and get your kids to help with grandma while you and your husband figure out a plan. Sounds like you can do this for a bit longer but not forever. The Alzheimer's association is also a great organization and can help you think through things. I wish you all well. It's the hardest job in the world but remember you can take care of mom yourself OR in a facility. You just have to make the best decision you can. Good luck.

I think it's wonderful that you are trying to help your mom but all of you are in an untenable position. I'm a recently retired nurse and for the first time in over 20 years, I don't have a family member living with me, and I hate to admit this because I loved them but I had forgotten what it was like to have any free time at all. I now have my own medical problems so have to now make that a priority. All of the posts make great points. However, one thing I would do if I were you is consult an elder attorney (or at least your county dept of social services). Many of them will talk with you over the phone for an initial free consultation. One thing they will say is don't spend your money on your mom unless money is not an issue. IF you decide to place mom in a facility, she has to spend her money down until she has very little left (usually about $2,000 depending on the state) before she can become potentially eligible for Medicaid. Any facility that accepts Medicaid cannot discriminate on the basis of payment source. Some will tell you that you have to pay the full price for 3 years, then they will accept Medicaid but this is actually against the law at least in my state. Any decent facility is going to cost a bundle. But home care is not cheap and it's difficult. I had to place one family member with advanced dementia in a facility because he was a very large man and he had broken his hip and leg in a fall from the sofa onto carpet. Even in the best facilities, you have to keep an eye on things. However, the cost to your family and you is also very high. It sounds obvious but you have to figure out a plan and have someone help you. Alot depends on what you WANT to do and CAN do. I will tell you this though..taking care of a dementia patient is way harder than taking care of someone who can cooperate. It's not your mom's fault or yours. You're in a bad situation. But you are going to be dealing with wandering, incontinence, mood swings, and alot of other things that she can't help....and think how she feels that she is in her own home but now it may not feel like it. Also, alot of elderly people with dementia (and even without) have medical problems and, e.g., sometimes they get urinary retention and have to be catheterized or they fall or...something else. Will someone be able to always be with her, be able to be flexible enough to take her to the doctor for planned and unplanned visits? On the other hand, it's only natural to want to be in your own home. It takes tremendous coordination and a united family to care for someone at home. I suggest you try making the living situation as bearable as possible for the near term and get your kids to help with grandma while you and your husband figure out a plan. Sounds like you can do this for a bit longer but not forever. The Alzheimer's association is also a great organization and can help you think through things. I wish you all well. It's the hardest job in the world but remember you can take care of mom yourself OR in a facility. You just have to make the best decision you can. Good luck.

The problem is not that she moved in with mom but that they frequently have 7 people there! Her grown kids should be on their own - show them the door. It's no wonder grandma is cantankerous. How about your family takes turns spending the night with grandma? That's the way we did it with my grandma. Can't imagine my mom's family of 9 moving in with her! Grandma needs peace and quiet. (And before the rest of you responders get your knickers in a wad, which of you agrees with her moving 7 people in?) This should be evaluated by APS.

Your mother is treating you and your family like she's doing the lot of you some kind of favor by having all of you there. She isn't and you need to remind her that the reason why she isn't in a nursing home is because you and your family agreed to live with her.
Remind her that you and your family can go right back to living in your own place with your own things as you like them.
Please, don't ever let it slide when she starts up or even insinuates anything like 'doing you and your family a favor' or 'letting you and your family move in'. Do not tolerate that for one moment.

It's time for you and your family to go back to your own place. Hire a live-in caregiver/companion for your mother who will be paid for out of her funds. Let the caregiver/companion sit with her 24 hours a day.
Families always make an idyllic image of multi-generational living in their minds which is never what it actually is. People think it's going to be like a Hallmark Christmas movie when they move themselves and spouses and kids in with the grandparents, or move the grandparents in with them. It's never like this.
The truth of it is elderly people will double-down on the complaining, instigating, and orneriness because there's a bigger audience to either get attention from or to stir up trouble with. If it's the family moving into the elder's home, well God help them because their lives become an unbearable misery. Multi-generational living does not work today in western cultures.
Go back to your home before your kids and husband start to resent you for making them live how they are now.

It is always interesting to read threads like this one because you can see in advance from the answers which people will turn into the entitled you owe me ones, and which ones will do everything to make their childrens lives as easy as possible. I never read the answers of others before making my own as it skews what one writes, I answer on the post by the author - sometimes this will come out harsh, sometimes it will come out supportive. Having ASD what it will do is come out honest and black and white logical. It is never intended to be offensive but I can understand that for some people blunt fact comes over as rude. If you write something I will take that as fact when I answer, and when I do go afterwards and read other answers I take those as fact as well. Some of these answers are helpful, some show the person hasn't read the post and profile, some are downright rude and make assumptions which go against the facts. The one thing one can be sure of is that the author is in a carer position which is causing them problems for some reason, it may rarely be solvable in the way they want, it may often need some change in thinking, but it never requires people to be rude or assume facts that are not given. We all need to remember that our children are those "soul" for whom we have responsibility having made the choice to have them. We are not responsible for those who chose to have us - their care in older age was their responsibility to plan for as ours is for us. Whether we love them or hate them, the generation older that us is not our responsibility in the same way the generation younger is, and we have to find ways to look after them first, ourselves so we can look after others, and the older generation according to what is possible in line with the others, not all elders can have everything they want, and those with dementia need care that is appropriate to their disease needs not our love. I'm sure my autism makes some of you boil at my answers, for that I am sorry, I never give an opinion or suggestion with any intention to cause distress or offence, but it certainly help me see which side of the fence many one here will fall when its their turn to be the elderly and in need of care.

Move back to your own place and let her pay for the help she needs. It sounds harsh but be assured where you are now is going to get worse, so either you look after your family in a normal family way and she stays where she is with care coming in as needed or your family life and relationships go down the pan whilst you try and keep her happy - which isn't going to happen. Her attitude will never change and you haven't even got to the incontinence stage yet. Look after you and the young ones - they come first.

Marmstrong: Imho, perhaps your mother will require facility living.

Marmstrong: Prayers sent.

I would either move her out of your home and into the cheapest place you can find for her so she'll be taken care of or you can move the big tv into one room apart from her. I can understand why you feel resentful because here you just want to enjoy a movie in your own living room and she has made that space to be your own. It could be that she just can't stand the noise and it's possible she's feeling jealous of seeing younger people doing what she can no longer do too. She could have a hidden health condition like heart or stomach and she might be in pain, too.

You and your husband need to find better living arrangements for yourselves and children. Your mom has dementia. I wouldn't expect too much from her.
Best of Luck! You can do this!

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.

I find most of the comments to this post so I helpful and so judgmental that I'm unsubscribing. If I need that much hate I'll just head over to Facebook. None of us asked to be in this situation; we are all doing the best we can.

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.

I would Buy a tiny Home and put in Yard and people who want to hang Out can do so in there . Tiny homes are not Much - More like a addition and Can add space . Dementia people sit In a chair all day and read or watch TV - Thats what they do - They have a routine that Makes them feel safe . People can learn to live in a room . Thats Part of the sacrifice - go to the Movies or out to dinner .

“She thinks that since it's her home she deserves to stay in her chair.”

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.

I don’t think it would be unreasonable for Mom to give her daughter and her family one evening a week to spend time together In the living room without her there.

Just to comment on part of your situation, and for the sake of others who don't understand asking your mother to return to her room for a little family time, I want to say that I found that request enormously validating though I do understand why it might be unworkable in her home, and in her state of dementia.

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!

Your mother could live for years. If she owns the house, maybe she could trade it in on a bigger house, one with two living rooms (or the equivalent, a "rec room" or a "rumpus room" or whatever). She might hesitate at first, but show her some pictures of some available houses. You might be able to talk her into it.

Is this a joke post? $3700 month will not pay for a nursing home unless she had insurance.

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.

You moved seven people into the house and now YOU want her to go to her room? Seven people?

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.

I can understand why an old woman would not want to be banished to her room, alone. Why can't everyone sit in the living room and watch TV? Why can't two adult children spend some time including grandma in conversations. The ages of your kids indicates to me they are very likely on social media in their private times. I would never consider asking my mom to go to her room so I could visit with others in the living area. I guess I just can't wrap my head around your expectations.

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

I agree with those who mention 'My home, my rules' concept. You did well moving in to take care of her house while she was away getting treatments. Saved you money and helped her keep her house taken care of Now that she is back, it is probably time for you to move out and resume your own family life as before and that includes her taking care of her bills herself. The present situation as many have mentioned is unsustainable.

It's best to have them out of the crowd and noise. Decorate their own room and have a visitor come in 5 minutes to say hello, one at a time and space the visits apart 15-30 minutes.

Hello, I think I'm in the minority here...
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.

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.

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?

Well the living situation is simply unsustainable for the health of your family and your relationships. You are sacrificing yourselves for the unreasonable wishes of your mother. One of two thoughts, Have here moved to an assisted living center where she will have her own apartment and its better than a nursing home. Second and the only reasonable alternative, is wait for her next hospital episode and then moved to an apartment at an assisted center. My sister was in a very nice, well furnished apartment with dementia. She unfortunately tried to walk away several times and was moved to a smaller apartment in a locked down wing. She still has access to going outside but its in a courtyard space. This was before she was place on medications for the dementia but in speaking to her over Thanksgiving, I can tell it would be risky to let her go back to a bigger apartment because of several comments about wanting out, even though she seems to be doing fine, not belligerent or combative, more like resolved but wants to leave. She can have a nice apartment all to her self and the staff will assist with any meds she has. She can watch her own TV and as much of Wheel of Fortune as she can handle.

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.

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 💜

This living situation is unsustainable. Many many elders beg to come home. Doesn't mean it's a good idea. Can she take care of herself? Even though it's her home, she is being unreasonable. Yet, since she has dementia, you can't expect her behavior to ever get any better.

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.