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My parents are living with us currently. It has been a stopgap measure, following my dad's fall and neck surgery which left him very frail and at risk of falling again. Cognitively he is pretty good for almost 88. My mom at 83 has moderate dementia, no interest or ability in ADLs, and is furious that we are not letting them go home. Dad's physical decline is largely due to her negligence and her daily angry outbursts directed at him. We siblings had considered placing them in AL, not wanting to separate them because of the panic she experiences apart from him. However, recently she is becoming more angry and insistent and we're crossing into territory where our own health is at risk. We're thinking it might make sense to have Dad live with one of the siblings and place Mom on her own. She would react very badly and probably decline faster than necessary, but we feel that as Dad still has a good quality of life, we should guard that and that she doesn't have the right to "take him down with her." Any experience with a situation like this? Most of the posts I have read deal with caring for just one parent or the other.

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I met a couple a few yrs back:.

He, stroke, bad knees, used a wheelchair part-time, mentally sharp & enjoyed his hobbies.

She, memory, behaviour & anger issues, resistive to care, no insight to his needs, no ability for self ADLs.

Family moved them into a continuous care facility. He had his own room + ensuite in AL, meals in dining & activities. She was MC or high needs) on a separate floor.

Visits were arranged to suit HIM & time limited - as she would pester, shadow & try to control him, even attack him.

The family were at first heartbroken to separate this long married couple - but this was the best compromise - to allow him quality of life without abuse & to give her a managed environment that she needed.
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BurntCaregiver Nov 2021
No one deserves to live in abuse no matter how long they've been married or if the abuse is dementia-related. This sounds like the best possible outcome that the couple could have gotten.
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I don’t think your mom is suitable for AL. She needs to be able to have some ability on her ADLs and ability to recognize a schedule or what a fire bell is. Not needing to have dad help her or tell her it’s time to go for lunch. Sounds she’s more needing a NH or MC.

I’ve got to ask, what’s happening that is crossing into “territory” where your own health is at risk? Is she threatening to call the police on you, accusing family of stealing or trying to poison her? Telling others that you did stuff to harm dad? Have you gotten the vibe that she might push dad to have him fall if she though he was going to do something without her? Did she quickly reach over and hit someone or try to stab someone with a fork with no mental registration that you don’t do things like that? Yes I know it’s awful, but if they have dementia their brain is broken. Personalities that were difficult before become flat impossible to be around…. So they will need to have some sort of medication management to have them be minimally social. Is she on or has she ever been evaluated for behavioral meds? If she were to go into a facility, realize they ASAP will have her evaluated for meds to quell anxiety or have her get a better nights rest at a minimum. You might want to look into getting her gerontologist &/or a neurologist appointment to see if a change in meds now will enable her to continue living in your home with dad. And if not, then look for a facility.

If it’s a couple and they have the ability to private pay, a NH will usually let them both be in the higher level of care facility and share a room. Should have a slight discount on room costs. I had an Aunt & Uncle who this for abt 2 years. Uncle Eddie had cancer and died first; he stayed real cognitive but frail. Afterwards She moved into MC as she did too much wandering for AL; was lots of energy, like she was canvassing for votes & talking to all. She would have been social chair if a NH had a sorority. My Uncle was her touchstone so she’d return to the room to chat a bit or bring in a snack or the mail then off to register voters. There was a discussion on this before he died, so the plan was set for her to go to MC.

If you choose this route (share a room in a NH) try to find a NH that either has a really involved activities program or an adjacent AL, so that dad can on his own can go an do an event. Your mom, well, their probably not going to let her off premises; her behaviors too risky. But dad, even if he’s frail, can still do an activity with the other old roosters….. like watch a college football game on a Saturday afternoon or go for card night. My Uncle did Mexican Train dominos till the end. The NH had this as guys only & the ladies were all fine with it.

If the folks need to apply for Medicaid, that’s going to be sticky. Medicaid is an “at need” program both medically and financially. & tends to be medically just for nH for most states. Medicaid requires both to be “at need” for skilled nursing care in a NH. If moms ok for skilled but dad is definitely just AL, that’s going to be an issue. You probably with a bit of work, can get dad to have enough in his chart to show need for skilled. Often when they r living at home or with family, they do not have the thick health history with doctors notes, labs, tests that clearly show need for skilled care. It’s something to keep in mind.
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Your mother probably is experiencing anxiety and frustration to a high degree since life just doesn't make sense to her. She is trying to regain control with her outbursts, but this behavior actually puts everybody at risk of harm.

Please have your mother evaluated by a doctor. If you start with her primary care provider, ask for referrals to neurology and geriatric psychiatry. She needs some behavior modification before she will do well in any residential facility. It might be in her best interest to spend some time in an inpatient psychiatric unit so that she may have consistent professional help until she achieves therapeutic levels of medications to help to calm her angry outbursts.

While waiting for her referral appointments and if she becomes violent at home, please call 911 for an involuntary psychiatric admission. Nobody should suffer violence at the hands of another person - not even those with dementia.
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Wilmore6 Nov 2021
I agree that she's trying to regain control with her outbursts - that's exactly what she's doing, and she thinks that if she can say what she wants again, only louder, she'll get her way. But the opposite is true; the more she acts out, the more likely it is she'll be placed in a facility, most likely on her own.
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Hello Wilmore,

what is your Dad's opinion on the matter? You say that he is cognitively fine and since it is concerning his wife of many years he definitely should be included in the decision process.

My father (90), frail, with painful mobile issues but mentally ok faces a similar problem with my mother (80), suffering from dementia and a broken hip. She is constantly asking for his attention, has jealous fits rooted in their marital history and regularly attacks him verbally, followed by tearful apologies.
Like you I sided with my father in the beginning and wanted to "protect" him from her so that he can enjoy his last years. But though he keeps complaining about her behavior there is no way that he would ever leave her alone. On the contrary they gang up against anyone who tries to improve the situation.
It is a sick dynamic and hard to watch from the outside, but after having offered various solutions I realize that he deep down wants it this way which I have to respect. The Taylor-Burton-Act is so ingrained in their lifelong identity as a couple that I gave up to "help".

Your situation might be very different, hopefully. I just wanted to gently warn you to mean well and set up a new structure without considering the deeper dynamics between your parents.
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Hugs!!! Hang in there, YOU are not alone & you can do this. For us the most important thing to do was to find solutions & make the tough decisions now before your dealing with a fast moving fire. Which can come on faster than we like to admit. A few years ago, we had very similar situation with my in laws. They hid their weakness & fought the family moving them to ALH (assisted living home). However it was super clear once they were moved exactly how much MORE care they needed & how much they covered for each other. They were placed in the same ALH in their own rooms. It worked for them, especially when MIL went down hill faster. Finding out what works for them is critical. Keeping in mind that you will need to find a narrative that is believable (to them) & everyone must use the same narrative. Example, MIL was bedridden & didn't get out of her room much, so when FIL asked where's mom? we always said the same thing, She's out with X (daughter/son) shopping & will be back soon. Due to both having dementia it was slightly easier. Find an answer that won't "spin" them & stick with it. Mom's out bursts sound very similar to my MIL's & we would just say anything to keep her happy. Make any unreal observations they vocalize into something simplified they can better understand. Obviously it's not fun, but the sooner you find a narrative (answer they accept) the better. Also, get a POA signed now for both medical & financial for both of them (independent of the other). It will be helpful / needed to move them into ALH, sell their home (if necessary), change doctors, etc.... My in-laws definitely kept us on our toes. We did a lot of research on the different types of dementia & how to best approach each with our loved ones. This was most helpful with seeing what stage their were in, set up next steps & move progressively with their care. ALH was a god send for us & although a tough choice, sadly it won't get easier with time. ALH do allow you to bring some of their household items (pictures, living room chairs, etc..) things they'd recognize & help them feel more "at home" in their new house. Hope this information is helpful to you. Sorry it may appear vague, it's just hard to decipher every situation you might encounter. Hugs!!!
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Wilmore6 Nov 2021
Thank you so much, I especially like your point about deciding on a narrative and sticking to it.
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Wilmore6: In yesteryear, it was often quite commonplace for one parent to predecease the other. Modern medicine has now extended the life of many. That, in turn, presents a challenge for their adult children. However, you must remain strong in whatever decision you choose.
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Wilmore6 Nov 2021
That's a very good point, thank you for the encouragement.
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I never lived in a situation like this, but I was the primary caregiver in a situation exactly like this.
My last long-term position started out with an elderly married couple and I was hire to care for the wife who had LBD and mobility issues. The husband was fine and he went out daily. He was with her at night. Their adult kids lived out of town and did not help at all.
Then he got sick. He didn't have dementia though. As he improved I discussed with him that he would have to think about a different care arrangement. I brought in some additional help, and redirected my attention onto him and away from his wife. She was pretty much a bedridden vegetable by then and out of it with dementia anyway. There was nothing to be done for her except keeping her clean and making sure she was fed, hydrated, and medicated. He had many doctor's appointments, luckily they were close by. The neighbor would pop in and check on her while we were at the doctor. It worked until he took a turn and passed away. The plan was going to be 24 hour care in their home.
Your father can improve and still have a good quality of life. So your attention has to be directed away from your mother and onto him. Dementia does not get better. It always gets worse. You have to place her unless 24 hour live-in care can be hired to look after her at home. You are right that she doesn't have the right to take him down with her.
What does your father think? Talk to him about it and tell him that the plan is that she is going into a care facility. As for her anxiety and panic there is medication for that. She will eventually acclimate to whatever care facility you put her in.
Let your father be pro-active in the decision though. If he wants to stay with her and go into AL together, then respect his decision.
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My dad is in Kentucky in NH on Hospice. My mom is in NH in NC. I’m an only child so I spend time going between them. I’m fortunate My husband owns a charter air service and can fly me. It’s hard having them both dying at same time.
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Yes. When my FIL had cancer and my MIL was ‘caring for him’ which usually meant yelling at him and making him feel bad for inconveniencing her.

Our solution was to move him in with us so that I could nurse him and SIL would look after her in MIL’s house.

It never happened. FIL was so excited to come, but she threw such a giant fit (as she always has done to get her way, like a two year old) everyone caved, he got worse, and then died. She did this because she was greedy and inconsiderate.

Don’t make the same mistake. He was a wonderful man who didn’t deserve to die like that.
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I'm in the same boat Wilmore. My family is in a crisis and I don't know were to turn.
I have a place for my mom -89-but she is refusing. My dad is currently hospitalized-93-
due to the stress of the verbal abuse.
I know my Mom is not going to get any better and needs help.
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