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sorryselma Asked April 2018

How to set boundaries and stay sane when MIL with dementia lives in your home?

I have posted on this forum before and have found it very helpful. I am still really struggling with how to set boundaries and maintain my own sense of health after my 89 year-old mother-in-law moved in with us from France about 3 years ago, I had not realized that her functioning had declined to such a significant level until she actually moved in. She had come to spend every summer in California, but was forced to wait in France for two years for her immigration papers to process. It was clear to me on her arrival that she had developed dementia. I was not prepared. My husband is an only son and feels a tremendous obligation to take care of her. His mother and father divorced when he was only 2 years old, and she never remarried. The thought of sending her back to France is out-of-the question, even though my husband seems to finally realize that we took on a much larger commitment than we could handle. He says there is nothing we can do about it and we have to make the best of it. On top of that, we don't have the resources to afford a facility here, plus she does not speak any English. So we are truly stuck; she also doesn't qualify for Medicare for another 2-3 years.


She is a miserable person, who complains incessantly about her health, she is paranoid that everyone is stealing her things, mentions non-stop how neighbors are running a washing machine at all hours of the night (We live far from other houses). Our dinners are the three of us - my husband, myself, and MIL - and the conversations circulate around her family and stories from 50 years ago. She sits next to my husband in the car when we go places together and I sit in the back seat.


I do feel extremely sorry for her. She has macular degeneration and great difficulty seeing. She used to be an avid reader. She has heart trouble. She also is extremely hard of hearing, and does not hear without her hearing aids though she very often refuses to wear them, making it difficult to communicate.


She has asked me to scream in her ear but I refuse. I have chronic daily headaches following a traumatic brain injury, so loud noises aggravate the headache pain. She yells frequently and I can hear her across the house; it is very unsettling and makes me feel like I am on high alert all the time. She doesn't see or understand that I am on the phone and has interrupted me in the middle of important conversations. I now close my door. I have taken her to a myriad of appointments and help her at home with meals, laundry, and other things around the house. I rarely hear a thank you. She has a very controlling personality, and it often feels she wants to be the woman of the house. She will tell me if she does not like the way I am cleaning the floor or that I shouldn't take a certain food item out of the freezer for dinner. She hovers. She is waiting by the front door when I drive up to the house. She gets involved in every aspect of our lives, when we have friends over she is always there. At night, she is on door lock and light patrol, and asks us incessantly if we shut the lights and locked the doors even though we reassure her that we will take care of it. She comes into our room with questions. I just feel that I have no breathing space, no privacy. She complains how she has nothing to do. I have gotten her a wonderful native French tutor for English conversation twice a week. We took her to an adult day care facility but she walked out after 5 minutes and didn't want to go, saying she couldn't see. She only has a couple of teeth so we have changed to a softer diet of overcooked vegetables. She is a smoker, and though she smokes outside per our rules, I still smell the cigarettes on her, in the trash, or when I go out to the backyard. It is all very frustrating.


I am currently looking for employment, so do spend a lot of time at home. My husband has a very demanding job and works long hours. I find the only way to have breathing space is to get out of the house. It has very difficult to find a French-speaking caregiver in a small town. We are working, though, on locating someone so hubby and I can get away on a mini-vacation this summer.


Right now I feel very overwhelmed and resentful. She was a very difficult MIL from the start. My husband and I have our own health issues. I have come to understand that you should just agree with someone with dementia and not argue, and affirm their feelings. I am getting better at not taking her behavior personally, that it is part of the disease. But it's a process.


How do those of you that have gone through similar experiences of having an elderly person live in your home rise above the chronic complaints and find joy in being in your own home that may at times feel suffocating? How do you stop her from COMPLAINING all the time? How do I set boundaries with a MIL who doesn't process things well and who has a difficult personality to begin with? Thanks for your comments and advice.

MissGrammar Apr 2018
Bless you for being such a supportive wife, in understanding his sense of responsibility to care for his mom. I can't imagine how difficult that would be, but you sound like you have a very good attitude about it.

I think it's cute that she's waiting at the front door when you come home. However, I can totally see how that would get old quickly.

I guess we can all realize that many of us will be in the same position one day, and do the best we can to be patient and kind. Humor is always helpful too.

Sorry, but I find it hilarious about the washing machine running all night.....lol.

jeannegibbs Apr 2018
It is very difficult to set boundaries with someone who has dementia. You cannot rely on their memory, or even their connection between actions and consequences. You have to have self-enforcing rules.

For example, it just doesn't work to say, "Don't come into our bedroom without knocking." You must lock the door so that she cannot come in without your permission. You help her into the back seat of the car, and you ride next to your husband. It really is just frustrating to talk about boundaries and rules. Do what needs to be done.

It will help you to learn more about dementia. For example, did you know that paranoia about theft is very common in dementia? Sometimes is it a fairly short phase they go through, and sometimes it is very long-lasting. But it is never rational and cannot be dealt with by explanations, denials, or reasoning. It is demented behavior.

Delusions about neighbors doing laundry or peeping toms or bugs on various surfaces, etc. etc. are common in dementia. Again, they can't be defeated by reason.

If you have signed on for financial responsibility, oh my! Do you know what a 3-day hospital stay will cost in your city? (And do you know that the US is the only country in the world where people go bankrupt because of medical expenses?) If your MIL's income will not cover a caregiver while you work, then what? Then you are working largely to pay for MIL's care. Expecting to cover your MIL's room and board costs in your home is one thing, but paying for her expensive care needs -- did your husband really think this through?

My school once had an exchange student from Germany. She developed a medical problem here. It wasn't terribly serious, but there was no way to pay for medical care for her here, so she had to go back to Germany where her parents' taxes paid for the care.

Paying for very expensive medical treatment in the US for someone whose life-long tax paying entitles them to the treatment in their home country can be a very frustrating experience. Fine if you are very wealthy. Maybe less fine if you are less so.

Your husband is an only son and feels a tremendous obligation to take care of her. He is also a married man. What are his feelings about his obligations to his wife?

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Sunnygirl1 Apr 2018
It sounds like a very challenging time for you and your husband. Unfortunately, setting boundaries and getting MIL to honor them is not really feasible. And, her dementia behavior will likely progress with more concerning issues. Have you read about the progression and what lies ahead. It's not just acting out, but, also loss of mobility, incontinence, inability to feed one's self, etc. So, total around the clock care would be needed. In light of this, I would immediately seek legal advice from an attorney on what your obligation are pursuant to that document you signed for her VISA. I'd find out all the details and what options you have. I would do this ASAP, before she becomes wheelchair or bedbound and your options are more limited.

sorryselma Apr 2018
Thanks so much for all the comments. In response to both SueC1957 and HolidayEnd, my MIL lived on her own in the same apartment for almost 50 years in low-to-moderate income housing outside of Paris until 2015. My husband was going back and forth to help her during the last years. He has awesome cousins in France who would drop off groceries. She was driving up until a couple of years before moving to the States, but then her vision deteriorated. French social services supplied a nurse to monitor her meds and she got meal delivery. But it was not by any means a retirement community, and she was living independently. The driving force for moving her here was the conclusion that MIL shouldn't live by herself any longer. No attempt was made to find senior housing/ assisted living arrangements in France. Hubby felt that it was not fair to leave her alone in France and it was his responsibility to take care of her. She receives a monthly pension, but has little savings. She has been able to save some funds by living with us, but it wouldn't last even a few months here with the cost of retirement or nursing homes. My spouse and I both signed a declaration of financial responsibility in order to bring her over, and it could put us in a dire financial situation, especially given she does not qualify for Medicare. She has Covered California insurance, but not sure what the the insurance situation will be in 2019.

SueC1957 Apr 2018
Who was helping your MIL in France while she was waiting for her Visa?
Can they take her back in?

I feel for you. We tried to care for my mother (stage 6 Alzheimer's) but were completely out of our league. The demented behavior will only get worse and, at some point, you will probably become her primary caregiver.

Who is going to watch her when you find a job?
As time goes on, her confusion will increase.

Being a French citizen, I'm not even sure if she'd qualify for any U.S. public services here. You might have to do a private pay for a board and care home, nursing home or memory care facility.
Does she have any funds she could use for her later care? Are they in France?

You really have accepted more than you know. It's a roller coaster ride from here on out.

Make sure to have some time for yourself. And don't let your husband push all the work for her on you. THAT doesn't come with marrying him.

How do you set boundaries for your MIL? You don't because dementia doesn't respect boundaries. Boundaries are only for sane folks.

How do you stop the complaining? Again, with dementia-you don't. My mother complains constantly about a perceived headache. One day I counted 44 times by 5 pm! Also "itching powder"-38 times the same day! Was I ready for the funny farm by the end of the day? Oh yeah!

Learn to turn off your hearing (ignore it). It works most of the time. Don't be too hard on yourself when you blow your stack. Go get out a good scream in the closet or garage.

You and your husband need to sit down and develop a game plan. Read up on dementia and how it progresses. Caretaking a spouses parent has been the ruination of many a marriage.

Good luck.

HolidayEnd Apr 2018
I’ve not heard of too many messes as big as yours! There’s a French film ‘Tate Danielle’ that was out maybe twenty years ago. You and your husband might find it funny, to break the misery.

You’re sure she has dementia? I believe dementia magnifies personality traits. She’s French all right. So are my dad’s side. They are rude, imperious and contemptuous of anything beneath their ‘standards’.

She sees hubby as hers, not yours. She is claiming him back. Besides all this babbling, how was she caring for herself in France? What is France’s social system for the elderly like? She is French after all. She’d probably live better there than here.

I think her going home to France would be best.

Kimber166 Apr 2018
I so feel for you!!!! I think my only suggestion is to get out as much as possible as she can't and she won't change, it is just going to get worse. Others here will have some great suggestions.

As soon as you can get Medicaid - i'd have her live somewhere else - but that is several years out. I feel for you!

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