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

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

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I'm at my wits end. Just recently moved my mother into our home from another state. She has been let go by 3 doctors (various specialties) over the past few years. She once again is telling a Multiple Sclerosis expert (that took us 3 months to get into to see) they don't know how to do their job. She is refusing to take the meds prescribed and gone back to the referring doctor, a great gerontologist, to complain about the referral he made. She reads inserts and finds facebook/youtube videos that support her beliefs from random sites that further compound the problem. She makes connections between symptoms and random events that are not related BUT she is convinced they are. I've tried to explain to her the repercussions of her behavior and her "all doctors are idiots" mindset but she simply will not cooperate. Fearing she will be let go again and I'm back to square one. We are building a suite on to our home because I know without a doubt, she will be evicted from a long term care facility once she needs it. Don't know what I'm looking for other than advice from anyone who has dealt with a similar situation, thanks for just listening.

Care Decisions Geriatric Doctors Medical Care

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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.

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She is 75 going on 95, and wanted to be old as long as I can remember. She's has been diagnosed with MCI recently. Despite her scoring in the normal range (27) on the dementia test she took, I feel like she is declining beyond MCI. There is deep depression involved too. I am trying to reconcile that no matter what I do it will never be good enough for her - I use to take it personally but that is how everyone she deals with is treated. At least now I am aware. The MS diagnosis was in 1994. At age 5 was the first time she took me to a nursing home to visit someone, when we left she said "You can never put me in a place like that". She has repeated it regularly (both directly and indirectly) for 45 years. I am going to do the best I can. We are having a 800 square foot apartment custom built so she can remain at home as long as possible. I know how she irritates people and I can only guess what would happen to her in assisted living from people she pissed off. I've also come to understand she isn't trying to piss people off, it's just who she is. Even though I KNOW that, it is still hard to listen to constant criticism. She and my dad divorced years ago and I never fully understood his side, now I do. He could never do anything to please her. I have never wished for a sibling more than the past year. She took great care of my grandmother the last 15 years of her life, but Grandma was passive. My mom did nothing but deal with her full time as a caregiver, I cannot do that. We are trying to set her up where caregivers can come in when she needs additional help. My wife is a saint and my support, I can't even imagine taking this on without her. I know someday I will not be able to have her in her own place, I am just trying to make this time as good as it can be for her until then.

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Please think long and hard about having her move in with you & your spouse. You will be tethered to your home for years to come. She will demand your attention daily.

Maybe Rethink & hopefully send mom to another AL and see what happens there before having her move in. Jmo but it’s a life changer. What are you & your wife’s plans for retirement? You won’t be able to travel anywhere overnight without paying someone to stay with your mother.

Good luck!

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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!!

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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.

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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.

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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!

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Many of US, Sadly, Do Often Know More than the Doctors. Or My Mom would still be Alive Today. However, In your own Case, Mom has Lived Long, Is very Strong and will Fight with all of her Might.
There is not Much you can Do, She is Stubborn as a Mommy Dearest Mule Here, Dear, But just keep REMINDING her she may be One day be put in a Facility that may Rid of Her, Then ask MOM: Where will you GO? If she Shrugs with no Hugs, You can at Least Sleep at Night, You Tried with all of your Angelic Might....

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Very true. Mom was not prescribed antibiotics and wound up in emergency room.

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

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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?

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One more thing. Remember, you are married to your wife, not your mother. Don't lose one for the other.

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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.

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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?

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"the problem was that she does not make sense any longer". YES!!!!!!!

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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.

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pdcameron, I am with Susanonlyone. Move in with your mother for one week to see how that goes. You cannot live with constant abuse. AL might be the best answer for both of you. No, she won't be happy, but you won't hear about it 24/7. My dad loved to argue. When he started I told him if he continued I would leave - and I did! Didn't take him long to equate "argument = without daughter".

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Check the med caution info or call the pharmacist to see if it is safe to crush the meds your mom refuses to take. If it is safe to crush, put the finely crushed and well mixed meds into your mom's food. Capsules can be opened and emptied into food. NEVER let her see you do this even once, because she'll be convinced you are dosing her every time she eats. This is not wrong, not lying or sneaky, just plain necessary. In some cases meds are administered in food or drink at every dosage time in health care facilities.

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PD, your mom has a point about nursing homes. While some replies make the distinction that AL is not like a nursing home, she'll like it there, she won't be as nasty as she is with you, etc., this could still go downhill fast. It is important to understand tenant's rights in assisted living, because if your state's laws are AL-friendly and the AL decides they don't want her anymore, she could end up in a nursing home. So make sure you understand whether there's a code of behavior, what happens if her own choices put her health at risk, and under what circumstances she could be asked to leave.

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Why scare the man with possibilities of what may happen in Assisted Living? Elders don't just "wind up" in Skilled Nursing Facilities if they're asked to leave AL.......they are just asked to leave and then it's up to the family to decide where mother goes next! I'm not sure you understand how the whole process works! Things can always go downhill fast, for ALL of us, no matter where we live or how old we are. If we all live the One Day At A Time lifestyle, we don't have to worry about What If's or What Now's.

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You have to do pretty much to get evicted. My dad got into a fist fight ( over whose milkshake was whose lol) and just got a warning. My mother is a witch to us usually but sweet as pie there and the ALF staff love her. She might do better there than you anticipate

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If you are talking about the Doctors in Naples, FL...She might be right!! Not kidding, because that’s how I feel about the doctors in this town. Same way your mother does. I know this might not help you, but to really find out, are you going with your mother on her doctor’s visits to see? She might have a point. A few people I know do all of their medical at Mayo Clinic in Jacksonville, FL because of this reason. Which is about 8 hrs away from Naples. Go with your mother to her appts and see.

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I hear you on this one....same thing here in sebring fl.....i will b eligible for medicare on 1 dec, and from what ive seen here, i may just have to drive to lakeland to watson clinic. The health care system is sure not what is was when i worked in the field....sad but true....

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Been there, done that. My mom always answers, "I'm the daughter of a doctor!" And? My cousin has the same response with her mother, my mom's sister, because she is also the daughter of a doctor. Maybe that meant rolling out the red carpet for them several decades ago, but it doesn't mean a thing today. Big deal!
And because she is the daughter of a doctor means that she KNOWS MORE than the doctors do. I ask her what medical school she graduated from? No response.

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PD, you say you ‘are going to do the best I can’. The best you can do is to listen to a lot of heartfelt consistent advice. The best you can do is NOT to spend a lot of money on an extension, destroy the health of your sainted wife, break up your marriage, get to hate your mother, end up putting her in care anyway, and regret the whole thing bitterly.

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Perhaps it was a mistake to "move my mother into our home."

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Unfortunately, people have the best of intentions before the fact (=actual move-in). Guilt, fears, loyalty, and/or finances may play roles in decision making. I believe what PDC needs now is compassionate listening and a place to vent.

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Put the meds in her favorite food and agree with her.
Is important to realize that she is speaking out of FEAR and self-protection.
See if you have a different point-of-view if you consider her point-of-view.
Mom is already moved in so you might want to consider Plan B.
You want to save your own sanity. Keep writing to us here.

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TouchMatters: You are so right.

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pdcameron: Believe me, I know what you're going through. I know that you're at your wits' end. I am sending prayers to you and big hugs.

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I recently dealt with the low level equivalent of "I don't need a brain surgeon, I am a brain surgeon" lol!!!! It's sad enough to make me want to cry.

Buzzfeed recently had a post of the passengers stewardesses disliked the most. One story was of a stewardess who had to wake an "elderly" passenger to confirm her seat belt would be fastened. The passenger yelled "why is it always what you want, why isn't it ever what I want!" The stewardess maintained calm and advised her the seatbelt is for her safety and then left her as she was if that's what she wants.

Im always worried because my parent refuses all Internet connectivity. Now I wonder what she would find there!

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Once you move them into a facility, they may never know the difference.... ? HA!!!

Luckily for my cousin, his Mom didn't know the difference :)

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

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