Mother knows more than the doctors... Any advice?

I only have a minute and will try to get back to this thread to give a more, ahem, measured response.

When I read this post, I literally said, “oh no” out loud to my living room. Your mother and my sibling could be twins in the personality department. When I had to take over his care, I was very clear - to him and in my own heart - that he was NOT moving in with me. (I already had a decade of Alz and Vascular Dementia care behind me.) This was quite a while ago and while I still take care of the “business” of his care and visit him in the facility he is in, he in is full time care in a location that isn't mine. Every single interaction I have reinforces the wisdom of this decision.

He is incredibly difficult to the staff. If they tried to kick him out, my response would be to allow the state to move him. Don’t make her emergencies - or the possibility of her emergencies - into your emergencies. This can destroy your marriage, peace of mind, health...

Someone like this will very likely not allow workers to come in. No matter what she says now.

The biggest red flag that caused me to speak out loud to an empty room is the “my wife is a saint”.

I am thinking in your mom it is partially personality and partially the dementia manifestation that can happen in about 20% of MS sufferers... this is so familiar because this is where my sibling is as well. People with those issues eat “saints” for breakfast. If your wife is kind and generous of spirit, I gently suggest that you really, really think before building that apartment. It is very likely that your wife will bear the brunt of the care AND the abuse that someone with a broken brain can dish out. If it is hard to form good boundaries now, her living under your noses and her daily care being under your direct supervision will make it next to impossible.

I have so much more but need to stop there. Just food for thought.

Um, at 75 years old, your mother could easily live another 20 years. Are you absolutely positive you want her living with you, in your home, where you are forced to deal with this behavior 24/7? Don't be so sure she'd get kicked out of a nice Assisted Living community where they're receiving several thousand dollars per month or more to house her there. They're not so eager to kick out complaining elders, because frankly, they ALL complain. They are ALL difficult. In AL, they also have a 'know nothing' doctor who makes rounds and sees the patients inside their apartments! It's wonderful, especially for these difficult mothers that many of us are dealing with.

And something else to consider.....she may STOP all the silly behavior in an AL community because she'll have lots of other things to do besides go to the doctor!

Just a thought. Best of luck!!

Do. Not. Do. It.

Start researching nearby residential sites and have her evaluated by the best geriatric neurologist/psychiatrist/psychologist you can find, learn how to develop a description of her behavior that is succinct, as objective as you can make it and BRIEF, and provide it for anyone and everyone who will be involved in her diagnosis and/or ongoing care.

On that “objective” part- if you need help with being objective (she IS your mom, after all), make an appointment with a geriatric social worker and explain you need help with doing that, and use the skills that will be offered to you.

My extremely difficult LO benefits greatly from small, judiciously trialed doses of mood support medications, and if she benefits, you will ALL benefit. It will be challenging with her physical condition, but at least, give it a try. If someone is able to establish that she has problems in the cognitive/psychological maybe even psychiatric domain(s), doctor’s will have a better perspective on what and why she does and how to react to it.

You maybe surprised if you decide to give her a trial in residential care, that your dragoness maybe come a cream puff. My dearly loved but dictatorial mom did just that.

Again. Turn the suite into a beautiful relaxation site for you and your spouse, and get to work on a plan to find Mom a comfortable, protective, supportive care site that is NOT in YOUR home.

I understand why you want to take care of your mother at home. I read your additional post below as well. But realize 2 things - 1) AL is not like being in a nursing home (I hate those places too, spent lots of time in them with my dad until he was well enough for AL. ) It's generally much nicer with real activities to get involved in. And there's no rule that you can't come to visit daily if it pleases you, or even take her out - shopping, dinner, wherever. It's not like you're dumping her & running away.
The other thing is it's incredibly difficult to get thrown out of AL. You usually have to be violent. My dad spent a year in one AL and he drove them to distraction. He wanted to run the place, and when they wouldn't follow his orders, he turned them in to the state for every little frivolous thing he could think of. He was getting some of the other residents to complain about the place too - mostly because they were bored & my father bullied them into it, not because this AL was a bad place. Another resident bumped into his power chair and instead of telling the staff, dad called the police! He never even got threatened with being thrown out & eventually he left there voluntarily. He convinced himself he wasn't disabled, moved into an apartment & I became the helper. Even this situation is a lot of work & many long hours.
Think it over, because unless you can afford 24 hour care eventually you & your kind wife will be more burdened than you can imagine if your mother lives long enough. It sounds like you really love your mother, and becoming resentful of the time & demands on your life that her care will make will hurt you both. It's much more difficult to bring her to your house, then realize (as so many of us have!) that it's not working, or down the road it's not working anymore - and then have to move her! Better to never have opened Pandora's box on that one!

Some more info would be helpful:

- how old is your mom?
- has she ever been formally diagnosed with dementia?
- when was she diagnosed with MS?
- are you prepared to become a full-time caregiver to this type of personality that will only get worse with time?
- have you actually called a facility or two and asked what it takes to "evict" a resident?
- do you have the funds to pull off full-time caregiving yourself?
Thanks for answers.

Before you make the biggest mistake of your life, spend a week with your mother in her home to get an idea of what it would be like to have her in your home 24 hours a day for the next 10 to possibly 20 years. AL facilities vary in the level of care and accommodations. My mother has lived in an AL for the past 7 years. At times she is totally unreasonable and extremely difficult. She becomes very angry and will remove her hearing aids and stop speaking to me for weeks at a time. The doctors only want money and she blames everything on the necessary meds she takes. Yet, she is not this way with the staff! My biggest fear was that they would either send her to a psychiatric facility or call me to say that they can’t keep her. But it’s been seven years and this hasn’t happened. She likes it there, and I am so thankful that I can appreciate her in good times and walk away when it gets bad.

Big cautions posted here. Please take them to heart. Do not sacrifice your privacy, sanity, and health.

Your mom has made her bed, let her sleep in it.

You have a saint for a wife, keep her that way by not having mom move in or your life will be hell and your saint very well may leave like your dad left your mom.

Why are you so intent on making your impossible mom happy?

Not all doctors graduate at the top of their class. Yes, there are a lot of incompetent doctors out there, then we have the type that want to sugar coat everything.

Please do not have her move in with you on a permanent basis, find a nice AL home for her. If you do have her live with you, your life as you know it will be over.

My mother says the same thing as your mother and doesn't take her meds either. She is 94, guess she doesn't need the meds anyway.

Is this behavior constant or do you not know when and where she will insult and behave badly? If it is constant you should not move her in with you. If she argues with doctors how will she treat home care people when that time comes? What you imagine, that she will be happy and safe in the addition to your home, may not be how it will go. I thought I needed to move in with my mom to care for her. I was and am still working, hired home care when I was gone. All made perfect sense. The problem was that she does not make sense any longer. She is not capable of it. And I almost went out of my mind. In assisted living she is happy and taken very good care of. They love her there, take her sarcastic put down comments as humor. Luckily she does believe and have respect for her doctors most of the time. That your mom doesn't makes it way too hard to deal with her health issues. Should you give this further thought?