So glad the trip provided another positive memory for you! And a proposal on the table? Honestly, you all seem fairly resilient in the face of challenge – if your dad says yes, I bet you can all weather that challenge as well. Plus a party!
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Good point. I mainly should be happy he has someone who cares so much for him. She’s a great advocate and takes a load off my sister’s shoulders.
I obviously have unresolved childhood issues, ha. There’s actually a Reddit forum for people who “survived” this denomination and then escaped. It’s quite illuminating.
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She loves him but wants marriage outside of his church…she takes care of daily life, is his role to pay for all her needs and wants??
Don’t like to be negative, but, indeed, this caregiver may have all sorts of paperwork ready for him to sign to benefit herself and not MaineLonghorn’s family, or the father’s charitable causes…
Edited to add: what happens with Power of Attorney or Medical Decisions, rights of spouse on these matters vs children…
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Well, I think hell would have to freeze over before he lived with her, ha, even platonically. That would come under the heading, “the appearance of evil.”
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Thanks for the thoughts - good points. She seems nice, but you never know. I don’t mind if Dad takes care of her after he passes, but it doesn’t seem fair for his assets to then go to her children when she dies.
That’s a valid concern. Unfortunately it’s a scenario I’ve heard about a few times.
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I have been a regular follower of this thread, but I almost never post. I have used much of the information and experience here to help me deal with my 94 year old mother. Things are not going well now and I need some advice from this group.
To summarize: mom is 94, has lived in the independent section of a CCRC for 10 years but has had a 24 hour aide for the past 26 months. I’ll call the aide C. Physically mom’s only real issue is tachycardia and Afib, along with the usual arthritis. She does have a history of falling. She uses a walker in the apartment but has only recently agreed to using the wheelchair when she goes out and about the facility.
Mom’s biggest issue is pretty advanced dementia/depression/anxiety. She was on zoloft depakote, and mirtrazipine for several years (along with some heart meds), but she now refuses to take any meds. She and C were having 3 hour stand-offs at the kitchen table over her refusal. She claims she doesn’t know what they’re for and she doesn’t needs them. I told the C to offer them for 30 minutes and then put them away. She was done this for several weeks and mom hasn’t taken any of them. I don’t think they were effective anyway.
Here’s the big problem. Growing up, she was the sweet mom everyone loved. Mom has become belligerent, angry, and downright nasty. I understand this is part of the dementia. C has a very difficult time getting her cleaned up and changed in the morning. It takes several hours and mom is not happy. When she is angry, she throws things. This week, it was the phone, TV remote, cutlery, her walker, and a glass of Ensure that hit the wall and floor. She also has called C “stupid” and probably worse things.
3 months ago, she had a routine doctor’s appointment at her facility. She wasn’t very nice to the nice or doctor. The visit report noted that she now has dementia with behavior issues and the next step might be memory care. C is familiar with memory care at her place and really thinks it would be awful. The doctor also suggested she might need seroquel if she stays in independent living.
At this point, I’m afraid C is going to quit and she’d have to go to memory care. I’ve seen the unit and the residents. I think they were all asleep or heavily sedated. We probably can’t get another aide. Mom has had substitute aides when C needs time off and several of them said they wouldn’t return to her. Yes, mom has a bit of a reputation and its not a good one.
At this point, mom is miserable and has no will to go on. In the meantime, her behavior is concerning. My question is this: has anyone had experience with seroquel? Is there anything else that would calm her down but not knock her out?
Thanks for listening.
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I’m really sorry for your mom’s decline. It’s rough when they get violent.
It doesn’t sound like it, but is your mom on hospice?
My mom was on Seroquel, and it made such a difference. In the hospital after her major fall, she was pulling at her IVs and trying to get out of bed and fighting. The Seroquel was the only thing that allowed her (and us) to sleep. When she was released, we asked her doctor to keep her on it, even though that wasn’t recommended. We were caring for her at home and needed her to be calm. Eventually, we had to take her off of it, but by then we had her anti-anxiety meds worked out where she was manageable.
I truly think our job is to land the plane as gently as possible at this point. If that means Seroquel, then do that, IMO. If that means memory care, then do that. How bad is the dementia? Would she know that she’s in memory care?
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My mom was on seroquel, until it stopped working, and now she’s on rexulti (another antipsychotic). They do not make her sedated. As dementia progresses people sleep more. So in addition to my mom’s other symptoms worsening, she is sleeping more. But that’s not the drugs (my father also had dementia and was never on antipsychotics, and he gradually slept more and more until he slept most of the time). So that may be some (or all) of what you saw in Memory Care.
My view is that Quality of life is always the most important thing at this point. Most importantly, your Mom is miserable. When she’s throwing things and calling people names, she is not happy. The drugs may give her some more peace, if not exactly happiness.
My mother’s memory care is fantastic. The people working there all (even the janitor and laundry person, let alone the aides and nurses) have a great touch with dementia patients. This is important when getting them to shower, or take meds etc etc. Or just in day to day interactions.
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I am so sorry the journey for her and you has become so difficult. Do you have siblings or other support for yourself too?
My dad, in hospice, became similarly enraged and was given seroquel. His nurses explained it to us as – agitation, anger and confusion are just like pain or nausea; distressing to the patient but treatable. “You wouldnt want him to be in pain without help, and this is not any different”. It didn’t seem to cause more sleep, although when he was sleeping so much it’s hard to tell exactly why.
It is so hard. You think you’ll land the plane with the person you have known and loved, and instead you have an unfamiliar angry person. Hugs to you. You sound like you’ve done a good job so far, so trust your instincts and be aware that grief has many faces. It’s okay to be sad.
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Echoing what everyone else said. You have nothing to lose by trying the new medication.
My mom wouldn’t take meds either so her facility starting hiding them in ice cream. It was a great treat for my mom.
We also had to make personal care as easy as possible. Dry shampoo, full showers just once a week, easy on/off clothes, etc….
The staff at my mom’s memory care were great with her. They had tricks that really worked to get the basics done without complaints.
My mom had all kinds of meds but was never sleepy until the last few weeks of her life as the disease progressed.
Best of luck to you and big hugs. It’s so hard!
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Some meds come in sprinkles that can be included in ice cream or applesauce. Both my parents were angry, paranoid dementia patients who would not take medicine (totally different than their predementia personalities) and medicine in sprinkles was a life saver for us. Memory care also turned out to be better for them than live-in help because it was so hard to find live-in help who knew how to handle dementia-related behavior issues. Many (but not all) of the staff at the memory care facility were wonderful with my parents and handled their behavior issues much better than their prior livein help or honestly much better than my siblings and I did. My parents both passed last year, but we are still in touch with some of the staff at the memory care facility. We will forever be grateful for the care they received their at the end of their lives.
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My 97 year old MIL is on seroquel. It helps. I would suggest at least trying it.
Please consider finding another place for her, if possible, for memory care. My MIL has been in 3 AL facilities, and the memory care in each facility was different (she didn’t use it, but we were familiar with it). In one, it was just so fabulous, in another it was very good; in another it was pretty meh but not bad. The fabulous place had amazing staff who involved residents in community life to the extent possible. The very good had staff who also involved residents in the community, just not every day. The meh place provided a happy environment and paid attention to the residents, but they didn’t have a ton of community type activities on a regular basis. At this point, if my MIL were to go into memory care, I think that it honestly wouldn’t matter what was provided, because she would just want to stay in her room. As long as the facility is clean and has a positive vibe, with staff that checks in on patients regularly and treats them with respect, I guess that would work for her. The key is cleanliness, care and respect.
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Sounds like a tough situation. Glad you had some insights here. Let us know how it goes.
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So much great advice and support here. I am grateful for all of your posts. Just a little family background-I am #2 of 6 kids (oldest girl-you know what that means…).I live 2 hours away and I try to get there every 2 weeks. I handle everything for her except her direct care. #1 died several years ago. 3 (#3,5,6) are long distance. One brother (#4) actually lives in the same town as mom. He’s pretty good about stopping by weekly but he doesn’t understand dementia at all. I could write a very long post on #4’s personality. He’s very aggressive, bipolar, and can be very difficult to deal with. He called me last night raging about all this and demanding answers. He’s threatened to go to the medical center at the facility and “set them straight”. I reminded him that I have medical POA and I’ll need to be there for any conversations. The last thing I need is an explosion from him. It won’t help mom’s situation at all.
Mom sleeps a lot and doesn’t eat much, except for ice cream. I am happy to hear that some of you have had good experiences with seroquel and memory care. Lastly, thanks for telling me that my job is to land the plane. I actually find that thought very peaceful. Right now I just have to prepare for a bumpy landing.
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Yes, our landing with mom was bumpier than we wanted but in the end she was no longer in pain and pretty comfortable. Getting to that place was a challenge. My son had to fight with his uncle about it. I’m proud of S but sad he had to fight for mom.
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The folks here have been in your shoes, so you are getting some good advice. IMHO, the hardest thing for me was to accept that things were not getting better. Intellectually, of course, we all know that, but I know (for myself) I was reluctant to place my folks in Memory Care, because “those people” had dementia and I was just waiting until my folks got a little better from whatever the issue of the moment was.
But the sad reality is that they continue to decline (with rare exceptions). Memory Care units are used to dealing with the issues you mention and good ones are skilled at engaging the loved ones. For sure, there will be an adjustment period. I told my folks it was just temporary while some repairs were done to their apartment and they eventually stopped asking when they would move back.
As far as meds, the analogy to pain meds is a good one. My parents, at different times, would get agitated over things. I hated to see them upset and worried about ridiculous things (mom thought another resident was trying to seduce my dad!) and we found that Xanax aas needed and some other regular things were helpful.
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Most advice-givers here have been there, done that and so are both compassionate and clear-eyed. 
I think I’ve told this story here, but when bff was considering putting her mom into memory care she worried because she felt like her mom would be the “best one” there and so she wasn’t sure whether that was the correct placement. I reminded her that for years she and her sisters were putting Band-aids on things and hoping that when the current crisis was resolved that their mom would get better – when they moved their dad into a facility the mom would get rest, when they sold the house the mom would get rest and get better, when the dad died the mom wouldn’t have that worry and would get better, when they discovered mom wasn’t taking her pills properly, they set up pill packs with the pharmacist to help her, but then she’d forget to take the whole pack. This went on for YEARS. Eventually they moved her to a facility in the same town as one of the sisters (the mom was in Texas and my friend in California so trying to manage all this from afar and with frequent flights was exhausting my friend). That was “fine” for years, even through a series of strokes and falls. Eventually, there was an issue with her LTC insurance and as her needs grew at assisted living to the point where she had to have almost round-the-clock care, I told bff that if they tried another Band-aid approach that in three months there would be a new crisis and they’d be left scrambling all over again. I encouraged her to take the memory care slot in the preferred facility when they got an opening. Her mom got great care there, and I don’t think my friend ever regretted making that move.
The plane is going to land no matter how much we fight it and how difficult it might be emotionally. Meds and proper placement can really help smooth out the bumps. Good luck to you and your family. @Mansfield.
Oh, and if the facility doesn’t already know, I would make a call and remind them that you have medical POA and give them a heads up that your brother is bipolar and can be combative and that any change to your mom’s care needs to come through you. I think people at these facilities have likely seen it all but that it’s truly a kindness to tip them off as to any potential problems.
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My last post was long so I started another one.
When I read your post last night, I cried. This was the first Christmas without my mom, and my kids all left yesterday and reading your post made me realize how traumatic her last year had been for me. Ugh, the Seroquel and the night dh and I stayed up with her until 4 a.m., because she needed to get home so her parents wouldn’t worry. 
The physical exhaustion of dealing with her but also the emotional exhaustion of seeing her in such distress, even when she was cracking jokes about her situation. Is it any wonder that I gained 15 pounds, eating away my stress? This stage of life – as the person and as the caregiver – really sucks.
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We had a good friend who told us once “the job of hospice is for your dad to feel better, not get better” and somehow that really helped me and my siblings discard the whole idea that we were giving up, or giving in, or otherwise letting our parents down. It is a profound change of mental framework and it doesn’t happen overnight, and everyone works through it at a different pace (which is super not-helpful!! oy siblings!! but we love them!!)
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