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My husband and I moved in with his mom after his dad passed away 6 years ago and his brother. For the last year she won’t allow us to get TV remote and turn down volume or even sit in living room and watch anything because she says she can’t hear and she’s trying to find something to watch. (Channel surfs) Sometimes this goes on all day. I just want to sit down to a little quiet time without the TV blowing you out of the house. I have tried setting the volume on TV but she has been able to bypass and I can’t fix. I try to watch tv in another room, but her volume overtakes mine. Now the heat is an issue. She says she is freezing. She is supposed to be on limited fluid intake because of Renal Failure. But she refuses that. Tried to talk to her about heat but she just wants it high. As soon as my husband leaves house all Hell breaks lose. She gets up with shorts on but she’s freezing. We got her a lap heating blanket and she says she shouldn’t have to use. Got her a heater in front of her chair and it’s not enough. She gets around with walker and one of us has to be with her because she has almost burned the house down. She orders my husband around like he's a puppet. He's had triple bypass so I worry a lot about him. She tells us everyday I’m just going to go to a Nursing Home or I wish I would just die. We have gotten her Doctor notified of how unbearable thing are getting and we just don’t know how to handle her Dementia and it’s her way or no way. I have been in my sports bra and shorts that have under pants and its so hot sweat's running down my back. I went to Doctor had labs done to make sure everything was fine with me and labs all good. She refuses to get home health assist and there is not another sibling to help. We are trying so hard but her Dementia is starting to take us down. Please help us with ideas before we pull our hair out. I suffer with depression and anxiety that was under control but caretaking is taking a toll on me. My husband feels it is his responsibility and I applaud him for being so delicated. Our relationship of 42 years has taken a downward spin also from stress. We need your suggestions.

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You could get her headphones. You could put a locking case on the thermostat and give her a sweater.

But I think that it's time that you and your husband decide that you aren't giving his mom the best care; the care that she deserves.

She would be better cared for in a facility that would regulate her environment, fluid intake and healthcare in general.

Do you still have a home to call your own?

Call your local Area Agency on Aging and arrange for a "needs assessment" to determine if mom needs NH or Assisted Living Care.

Gather her financial information. I assume someone has Power of Attorney?

Tour facilities that are within her price range, or work with an eldercare attorney or Medicaid planner to get her qualified for long term care medicaid.

Decide when you are going to stop this madness. Please stop letting the dementia patient drive the bus.

I think the bigger issue here may be that your husband suffers from Fear, Obligation and Guilt. (F.O.G.--look it up, it's a real thing). This situation isn't healthy for ANY of you.
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CM is right; she has the right to control the temperature in her own home and make unwise decisions.

However, she has NO right to destroy your and DH's heath, physical and mental in the process.

You guys need to get out of this situation.
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Countrymouse Apr 2022
I love the Freudian typo! x

And quite - seeing as this lady does appear to have mental capacity for most purposes, OP and her DH are under no obligation to endure her preferred living situation.
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Sigh.

Among the 5 principles established by law under the Mental Capacity Act 2005, in force from 2007, amended 2019, which I have had the measureless joy of studying all bloody morning, is...

... the right to make unwise decisions. If your MIL wants to prance about in her underwear and complain of being cold, if she would rather deafen the town than wear a hearing aid and/or get some good quality headphones, and even if she wants to ignore medical advice on the best management of her chronic renal failure, and she's doing these things in the privacy of her own home, so be it. She has the right to be wrong.

Apart from "she has almost burned the house down" - so have I, though I was eleven years old at the time and in bed reading by candlelight during a powercut - is your MIL's dementia showing itself in any other ways? What happened on that occasion, by the way?

You say your MIL wails that she is going to go into a nursing home or just die (sigh, again). What's stopping her going into a nursing home? - if that is what she wants, and says so regularly.
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BurntCaregiver Apr 2022
If the MIL is in cognitive decline and has an actual diagnosis of dementia, she is incompetent to make any decisions greater than what kind of sandwich she wants for lunch.
This is where things like POA, conservatorship, and guardianship come into the equation.
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Your husband does have options, it's just that his F.O.G. is preventing him from wanting to choose any of them.

If I were in your situation, I would have a very diplomatic discussion with your husband and lay out options that are acceptable/healthy for you as a couple yet still is helpful to MIL. Your husband needs to have it pointed out that him deciding to not decide on alternative strategies means he is choosing for you to have depression and for your marriage to tank. He can deny this but there'll be no evidence to support otherwise.

The caregiving arrangement is only working if it works for both parties: receiver and givers. It cannot be damaging or onerous to you two, and it absolutely is as it stands. Also, he is not responsible for his mother's happiness.

Is she willing to go for a hearing test? My mom, at 92, just got hearing aids at Costco and it was an excellent experience. Up until the first day she wore them home she was insistent that "she heard just fine". She watched tv with them in until she went to bed that night. Then we she turned the tv back on in the morning, she was shocked at how low the volume was. Case closed. Also, I told her one of the conditions of me being her PoA and daily helper is that I am absolutely NOT going to suffer having to yell things at her day in and day out. At the very least your husband needs to make a stand on the hearing issue.

If she's resistant to hearing aids, there are simpler, less expensive hearing amplification devices that she can wear found online. And as others have suggested, she can wear good quality headphones or earbuds to listen to the tv.

Is your husband PoA for his mother? If not, this will eventually turn into a hot mess in caring for her as her cognitive and physical condition declines. Has she ever had a cognitive/memory test by her doctor? It would help your husband to know where she's as so that he can make better care decisions and she "drives the bus" less.

At the very minimum, you can make couples therapy a condition on which you stay with him in this dysfunctional situation. There he may learn about FOG and co-dependent relationships. I wish you both much success in working through solutions!
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The conclusion of all of his, is that you and your parents can't live in the same house. There will be no solutions if you continue to live together.
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I was going to say her house. But, really there is much more going on here. I do think its time to discuss Mom going to a nice LTC facility. Maybe MC but not an AL she is passed that. Get her evaluated for 24/7 care and a formal diagnosis of Dementia if she doesn't already have one. Use any money she has to pay privately. When its gone, Medicaid can be applied for. As Caregivers Medicaid may allow u to remain in the home. Or sell it and use the money for Moms care and you then get on with ur life.
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For gods sake move her into a nursing home now. She already volunteered to go. And what's the brothers deal is he able to live on his own or does he require care too?

Your husband is insane to want to continue living this way and it is making you physically and mentally sick to.

This is not going to get better as her disease progresses. And she could live another 10, 20 or more years. It always amazes me how long people can live with so many major health issues.
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BurntCaregiver Apr 2022
sp19690,

The MIL isn't really willing to go to a nursing home. This is added for dramatic effect. It's part of the "performance" she's starring in for her son and DIL.
This episode is 'Guilt-Trip and Martyrdom To Get Attention Or Their Own Way'.
A real classic. It's like a child who threatens to run away from home. You only let it go so far because it can only go as far as it's starting to get dark outside.
They need to exert some control over this situation. The same way the adults have to when dealing with children. The kids can't be allowed to run everything their way. The needy elder with dementia can't be allowed to either. Let the kids and the elders have their way on some things within reason. Not on others like the tv blasting night and day. Or the heat being set so high camels start walking by.
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Often times you have to treat elderly people with dementia like children. How would you handle a situation with a five-year-old who wants the tv blasting and will nothing but M&M's for every meal?
You take the remote and put the closed captions on for her. My mother pulls this too from time to time. Putting the tv volume so high that everyone hears it across town. I tell her to turn it down. If she refuses, I take the remote and turn it down myself. I hold on to it too. As for the heat, have a lock installed on the thermostat.
Whether or not the place is "her house" isn't so important. You and your husband as well as myself are the only things standing between our senior brat mothers and a nursing home. My mother who doesn't have dementia but sometimes forgets this will get a good reminder from me. She too pulls the 'why don't I just die' or says to put her in a nursing home. I tell her it will likely come to that then I walk away and ignore her. The tv doesn't get turned back up though. Your MIL with dementia will have to be handled like a child. Take the remote away. What is she really going to do about it other than throw a tantrum? Put that lock on the thermostat.
If the tantrums get to be too much start medicating her. The doctor can prescribe medications that come in liquid forms like lorazepam. Put some in her drink.
If nothing works and your MIL continues to be unmanageable, walk away. Have her placed if you can. Or leave her to her own devices and put in a call to APS. Or visit the local police department and have them do regular wellness checks on her.
You and your husband married for 42 years are old enough that you could move yourselves into a nice senior retirement community and you should.
Your husband is to be commended for his loyalty to his mother. What about his loyalty to his wife? You're more important than living in misery so your MIL won't have to pay for care or is stubborn and doesn't want caregivers coming in. People often think they have to be caregivers to preserve assets. It's hard to see everything a person worked for get eaten up in no time paying for elder care. What about all the time that gets eaten up from people's lives who are doing that care and living in situations like yours and worse? Money comes and goes. People can always get it or make it back. No one ever got back a moment of time though.
As of late, I've been seeing my ex-husband again. Likely we will reconcile. I've told my mother that this will mean I move out. She can't afford homecare costs and will need more hours than insurance will provide. She thinks someone will gladly move in here and help her in exchange for room and board. I told her that there aren't indentured servants anymore and President Lincoln abolished slavery a long time ago. Maybe she can find a homeless person sleeping in a doorway willing to enslave themselves to caregiving for room and board. If not she has to go to a care facility. Of course she doesn't want that. No one does, but it will be what she needs. What a person needs is often very different than what they want. She thinks when it comes down to the wire that I will take her with me. That wouldn't be possible even of I wanted to which I don't. My ex had at best a very strained relationship with my mother. He saw for himself how she is when we were married. He totally understood why I went zero contact with her for almost six years when we were married. My sibling will not take her in either.
My sibling and I will make sure our mother has what she needs. It will be different than what she wants and demands though.
The choice is take it or leave it.
Same with your MIL. Your hubs needs to understand how profoundly miserable his wife is living in this situation. You come before her. Make him understand this.
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When my father with vascular dementia was going through something similar we realized it was about control - and we have him limited control. My mother began sleeping in a bedroom across the hall and I installed a window heat pump (kinda like the ones in hotel rooms) so he could get the room as hot or cold as he wanted it. Fortunately the master bedroom was large enough for dad to have an area for his rocking chair and a table in front of a TV. As time went on, he spent most of his day in there, even getting to a point where he ate most of his meals in there too. When my mother would enter the room to clean or get some clothes from her closet or dresser, dad would tell her to get out. I also replaced the mechanical thermostat on the house with a programmable digital one dad could not operate. So the whole house (including the bedroom mom used) remained a comfortable temperature while dad's room was a furnace or cooler depending on dad's mood. The master bedroom was fairly soundproof so mom could enjoy the TV in her room or the living room or the kitchen.

This worked for a while until other factors (dad's health and the impact caregiving was having on mom's health) demanded a move to memory care.
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My DH put a timer on his aunts tv to cut the noise off at 10. He was usually in an office during the day with the doors closed. He also had another remote where he would stand behind her and lower the volume without her noticing when he wanted to use the kitchen where the noise drifted. She was so cute with the remote. She hid it under her pillow at night. She who has the remote has the power. I don’t think she ever realized he had another.

I don’t mind heat but DH can’t handle it. He took control of the thermostat during the pandemic when we had to be there so she started wearing flannel. I would remove all her skimpy clothing if I were you while she is tv surfing. Replace with cozy pjs. You will wonder why you waited so long after you adjust a few things. Tell her how nice she looks.
I think always pick your battles but I wouldn’t let my MIL kill my DH whether he liked it or not.
About it being her house. Yes it is but she couldn’t live in it without you.
I would let her know she has a choice. Compromise or do it your way. 😇
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