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My mother had a stroke and has since been diagnosed with mild dementia (she's on Aricept and a depression med amongst other things). She has some trouble swallowing (soft foods only), can't walk on her own, etc. She is in complete denial of her situation. Right after the stroke (before her dementia diagnosis) I got POA for her (she agreed at the time). She has since consistently been asking for me to 'get her out' of the nursing home and now she has switched to demanding me bring all 'the paperwork' so she can review and figure out how to revoke the POA and sign herself out since I'm not helping her. The nurses/staff know that her stay is permanent and don't mislead her. Besides my normal tactic of deflecting, changing the subject, and just listening to her... anything else I can do? Her dementia appears mild (to me) and mostly appears to be mild word-finding issues and some minor mis-speaking (referring to her ex-husband as my son's father instead of his grandfather for example). She has already told the nurses (once that I know of) that she doesn't need her meds, but ended up taking them anyway. She is a fall risk (has had multiple falls, but none in months) but can transfer from her wheelchair to the toilet by herself (the surfaces are stable enough). She cannot get out of bed or her recliner without help (too soft). Since she can do little things, she thinks she can live independently. In the skilled nursing facility she is at their level 4 (highest) of required care and I know that she can't take care of herself. Any advice on how to handle?

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My FIL has a much more advanced dementia and he had been in and out of the Hospital for the last 15M or so. It's a long story but feels similar to my beginning so I am sharing. With Dad we tried our home, and quickly realized we couldn't give him what he needed because we both still work. We set him up with amazing full-time care that adored him, and still allowed him privacy while being safe. He wasn't happy with that either! His paranoia made him believe they were "squatters" sigh. Because we had not taken steps to incapacitate him when originally medically advised (difficult family dynamics with his brothers) he was able to kick out those caregivers, essentially. Then he one thing at a time refused to do his rehab arranged "care plan" stuff until nothing good was left and he was back to his wicked eat terrible, no exercise, no fall monitor ways. That lead to many more illnesses and injuries and just bad situations witnessed by neighbor's but they were not quite enough to land him the offer for help with incapacitation again.... Originally we felt like we had to give him that chance to do it, or show us he could. We were wrong, we should have listened to the Neurologist and the rehab. Not doing so led to over a year of constant problems and worry, and it was not safe for him. We just didn't really want to see it at first and then we were not willing to go to War with the brothers to do so. Cut to late Jan where he almost died from pneumonia because he aspirated some food and passed out on his kitchen floor. Now he doesn't even qualify for assisted living, let alone home, he has to be in a Memory care because he got worse quicker on his own. He was incapacitated this time weather we wanted it or not, for his safety and actually I am grateful. He still wants to go home, but there is no chance, not even if we could get him to do a care person because he'd need constant monitoring. On good days he knows who we are, on not good days not so much but the one thing he always gets out is he wants to go home. He actually likes where he is, it's a very nice place. He likes the attention, people around, being fed ect. Yet he still just wants to go home so he can be naughty and he can't accept that was really bad for him. It's sad and I don't know if he will ever get past that. If we had to do it again, I'd do it differently. I feel way too much guilt that he almost died because we were trying to let him be, and therefore "be happy". Everyone has a different journey, a different situtaion just do the best you can with yours. Find a great Dr. and listen to them and your heart, I wish I had. Good luck to you!
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LoopyLoo,

I know what I said sounds harsh. It is harsh, but it's also true. Elders in a nursing home who do not have people on the outside breathing down that nursing home's neck night and day, aren't going to be a priority patient. They are also going to get ripped off. This is how nursing homes operate.
Sure, there are some that are decent places who take good care of the residents and give them what they're paying for. I have yet to find the one that accepts Medicaid though.
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LoopyLoo Mar 2022
I get where you're coming from; just seems you're still bitter about the whole experience. Which you have every right to be. But it's inaccurate and a bit arrogant to suggest people are just fooling themselves if they think their parent will be cared for properly in a NH.
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Your reply to Louise 13 sounds just like my mom… get the capacity done.

I tell my mom when she complains.. sorry mom, we are not moving… my mom will never be content anywhere. Now occasionally she tells me she likes where she is. Finally acceptance..

This journey is so difficult..
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I'm a senior and in a nursing home. I have not been diagnosed with dementia or any kind of cognitive impairment.
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BurntCaregiver Mar 2022
Are you a rehab patient who will be released at some point or are you a permanent resident?
There's usually a very big difference in the care and attention between a rehab stay and a custodial, room and board resident.
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Louise315,

I'm responding to your comment to me lower on the thread. I challenge you to find me an elder in a nursing home that hasn't been diagnosed with dementia. I would be very interested to know that unicorn's story. I'll call them a unicorn because God knows they'd be the only one of their kind left in existence. Terrific.
Medical personnel in nursing homes take their jobs very seriously and don't 'add labels' without serious consideration?

LMAO!!! Seriously, I almost choked on my coffee when I read that. In what universe is that true? You may have gotten extremely lucky and found the one 'unicorn' of a nursing home for your father.
My father was in two different ones. The first was $10,000 a month. The second was $12,000. I still had to be up both of their a$$es 24/7 and there was still gross neglect. He still suffered serious injury. Please, most of the medical personnel or "professional" staff, do not take their jobs seriously. I know that some in a nursing home really try for the residents because they truly care. They are few and far between though.
When the $12,000 a month nursing home petitioned for conservatorship over my father the doctor their facility uses diagnosed him with moderate but rapidly advancing Alzheimer's/dementia. I asked the social worker during the conservatorship hearing the dates of when their doctor examined him to conduct the testing for it. The judge gave her a friendly reminder that we were all under oath and not to forget that.
Turns out the doctor who 'diagnosed' my father had never even seen him.
His diagnosis of Alzheimer's/dementia was based on the social worker's notes who was sent by the nursing home, with their lawyers, to the court hearing.
If social workers are able to make a medical diagnosis, wouldn't they be doctors? They wouldn't need one to sign off on paperwork if they were qualified to diagnose illness and prescribe treatments. This was how much "serious consideration" is given to patients in that $12,000 a month nursing home. So serious, they let their social workers diagnose and "add the labels".
I won't get into the Medicare fraud and double-dipping on the billing here.
Many times there's no choice but a nursing home for an elder. This is the sad but true reality for many people. If it eases your mind to believe that the patients are the top priority of a nursing home, then God bless. I hope you find comfort in that.
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bundleofjoy Mar 2022
good warnings!

we must learn from each other.
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Wow! You certainly have gotten a huge response to your post! It sounds so much like what I’ve been going through with my dad (age 90) with dementia. He spent about 2 years on and off trying different places to stay (none of which he was happy with as he wanted to be home). He was in an independent living facility for a while (less than a year) and then moved to an AL community. Although he was never formally diagnosed as your mother was, we think he also probably has vascular dementia. Like your mom, he still has the ability to connect, remembers names of those around him, and sometimes can remember events, but he most certainly has dementia, as his short term memory is nonexistent, and he lives pretty much in the moment right now. Don’t stress about the replies of those who obviously do not understand what you are going through and are expressing horror about having her in a NH. From what you’ve shared, the home you mom is in sounds competent, and has caregivers that are considerate and caring. I don’t think mom would have been happy at home (with less support care and more independence)if she has been a fall risk in the past. She’d probably just end up angry that you aren’t there enough to hep her, or that she’d fallen again, etc. My dad was with us in our home for a while and wasn’t happy there either - he wanted to drive on his own and was furious that we didn’t understand that he was perfectly competent. This coming from a greatly handicapped elderly gentleman who could barely walk with a walker at the time, and could not get into or out of a vehicle without assistance. Dementia patients like your mom and my dad can suffer from anosognosia, or an unawarenesses of their condition. They actually truly believe there is nothing wrong with them. Hence the reason many responders here warn you not to try to argue with her - it will not convince her as she believes she is fine and that’s why she thinks you are out to get her. Sounds like you cannot afford AL. One thing that helped calm dad a little was giving him choices where we could. While he was in rehab we showed him several places he could move to. Being able to be a part of the decision was very helpful for him. Maybe there are choices mom could take part in at the NH? Like a new room with a different view, or events or activities? I also would advise you to check out Teepasnow.com. Teepa and her organization helped me tremendously. She has many short vids that are easy to process when you are stressed and depressed as a caregiver. I couldn’t handle reading a whole book on dementia, but a 12 minute video was doable. Many of her instructional videos are free to watch on YouTube. She is a guru when it comes to dementia care techniques. Every dementia patient is different, and some handle stressful situations with the fight response. My dad is that way - and like your mom, he lashes out at and blames others when he’s afraid. He also hates losing his independence, and will get snappy when I do something for him (no matter how good my intentions) without asking. Teepa addresses these types of situations by showing you responses that do and don’t work. It’s really tremendously helpful. Also - try to get the care you need for you. You have cared for mom with great diligence so far, and will probably continue to do so because it’s who you are. Just remember that you can’t care for her as effectively if you are run down, worn out, or even worse, completely burnt out. Set up visits with her from your friends, moms friends, and family you trust, to give yourself break days. I totally agree that it’s very distressing when they distrust you, and attack. But it’s not their fault, and they need people who love them and care for them to visit regularly to help reduce loneliness and depression. It doesn’t always have to be you, though. Sending hugs 💗🤗!! You’ve got this!💪
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autumnsfalling Mar 2022
Thank you for your note - it is helpful and supportive! I didn't want to get into all the details, but will provide a bit more background. My mother has no assets - none. We supported her 100% for the 12 years prior to her stroke (living with us). We are not able to provide the level of care she needs in our home. The safest and healthiest place for her is in the skilled nursing facility (she is on Medicare and Medicaid). They are wonderful there! My visits are always unannounced and she is always clean, hair brushed, etc. She has a lovely room with her bed next to a big window looking out on a pond surrounded by trees. She loves that view. What she doesn't love is not being able to make her own decisions. Unfortunately, even when she was living with us, we saw her decision making ability decrease over the years. She started having trouble driving (she got lost going from the library to the grocery store which is 1.5 miles apart and both are about 3 miles from our home). We were having conversations about taking her keys away when the pandemic hit and she stopped driving anyway. She was starting to have trouble caring for herself and was having more and more difficulty navigating stairs, forgetting that she was cooking and go do something else, etc. I work from home and 'watching' her 24/7 was becoming a 2nd job for me. We believe that her decline was due to the mini-strokes she has had over years. No matter how much we tried, she adamantly refused any medical care whatsoever. It was only when she had her main stroke that we were able to get her to a hospital.

The nursing home she's in, really is wonderful. They have lots of activities, she socializes there more now than she ever has before. Her life before was pretty closed off (by her choice) and her only interactions were just our family and the internet and books (we had always encouraged her to get involved with social things, but she refused). Now she does activities, crafts, social events. They have a library, she had tried to read books there in the past but her brain doesn't allow her to absorb what she's reading so now she just sticks with the daily newspaper (but doesn't retain what she reads in it).

She cannot walk, even with a walker, unless an aid or therapist is supporting her with one of those belts. She can only transfer herself from one hard surface to another (like the toilet to wheelchair - but this is only happens occasionally - most of the time she is fully dependent on an aid helping her transfer), she cannot do any of her ADLs on her own. It's awful, but she cannot leave the facility for her own safety. Even if we got in-home care, she needs to be watched 24/7. Our home is not safe for her. Her coming back here is out of the question.

I agree - it sounds like my mom has anosognosia. I've been reading about it the past few days and it sounds like I'm reading about her. I'm going to ask her nurse today if they've done a capacity evaluation on her and if they haven't done a formal one, I'll request it. I believe they have done one already, but I don't have a copy of a Dr's letter. I think that it would be good to have on hand.

I've asked my mother many times if she likes the people, activities, etc. And she does! She even likes the food! She can only have softer foods and orders the salmon most days for lunch. Her liquids have a thickener which helps her swallow them - she even likes that (the nurses said that most people dislike the thickeners). She said that it's easier for her.

As for other support for her - there really isn't anyone else. Her brother calls her occasionally but he lives on the other coast and she hasn't seen him in about 40 years. My sons and I visit (my boys really enjoy the visits) and she has made friends there (waves to them when we pass wheeling her to the atrium for visits). She just wants out, she wants the 'old life' that no longer exists for her.
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I agree with Moxies--Not not every one is better off at home. I had my mother with Alzheimers home with me for a year and it almost killed me. I had no life. There is no such thing as a live-in, 24/7 caregiver. Any caregiver will still only work 8 hours a day. They have to sleep and have time off too. I got outside help 8 hours/day, which left ME on duty the other 16 hours. Everytime an aide cancelled or called in sick, it was ME who had to cover the shift until the agency found a replacement. It was ME who had to train every new aide that came into my home. An aide lasted an average of 2 months, then they would find another job or whatever and I had to train a new person and make sure she and my mother got along. These aides from so-called professional agencies are basically housekeepers. None of them had any training for dementia patients. And God forbid your mother falls or gets a cold, or flu etc. It will be YOU up all night, bringing her to the doctor, picking up her meds, doing her physical therapy, helping her to the bathroom. I did all the grocery shopping and meal preparation. Aides dont cook, they just reheat. Keep her in the SNF and visit often to make sure she's cared for. Meds help! My mother was on antidepressants and Trazadone which were a great help in keeping her calm, but not drugged up. Seroquel is also a good option for dementia. The Aricept is a preventative medication--it doesn't keep them calm. Good luck.
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bundleofjoy Mar 2022
dear burnoutgirl,

hug!!

”I had my mother with Alzheimers home with me for a year and it almost killed me.”

:(
sounds extremely tough.

“I had no life.”

wishing you well!!

———

regarding drugs, one must be careful: sometimes for example, they might make elderly people fall more (seroquel, etc.)
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People… if home care was an option, don’t you think the OP would have done that?
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bundleofjoy Mar 2022
dear OP,
:)

i might be wrong, but i have the impression that those who suggested in-home care didn’t mean your mother should live with you.

but that your mother could perhaps have her own separate place, with in-home care.

but you made it clear today:
your mother has no assets.

——
many of these situations are so hard.

i’m sending lots of compassion to you OP and your mother!!
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autumnsfalling: Your mother's physician would be the one making the decision about her health care needs.
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Please talk to your mother's doctor(s). She is experiencing anxiety about her situation. She might benefit from a mild anti-anxiety medication to help her relavx as sne adjusts to her new reality.
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Not all SNFs are terrible, and not every one is better off at home. Coordinating in home care can be extremely complicated and expensive, even if you have room in your home. I am so sorry you have to deal with your Mom's distress. You might want to discuss with a geriatric coordinator, or advisor, all the steps required to care for her at home. You will have a much better idea of what is involved, and can in good conscience, respond to your mother's request/demand factually. I would agree that allowing any SNF to take control can be a problem, if not always.
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Absolutely GET HER OUT OF THERE!!! There is no need for her to stay in a place like that when she can get care at home.

There are programs that can help pay for her care so she CAN stay at home. We have one here called IRIS for the elderly and disabled. They can pay for things like LIFT CHAIRS and specialized equipment to help her get around. Did you know that some of these meds MAKE you a fall risk. My sister didn't start falling until they put her on them. When I told them to stop, she recovered!

IRIS and other programs like it will help pay for caregivers (including family). Your mother can direct her own care and choose who she wants to hire.

Please consider these options and LISTEN to your mother!
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juanjunoz Mar 2022
I agree. She has a right to be in the "least restrictive environment." The fact that the nursing home has her in the highest care setting might just be because that way they can charge the most. She hasn't had a fall in months. She only has mild impairment. Something seems off. Sounds like your mother thinks so too.
Read "Clarissa" by Samuel Richardson. My mother had a very short, unexpected stay in a SNF after surgery and our experience was just like that novel. Everyone was gaslighting us, giving us the runaround, day after day. I think she'd still be there if my mom (the most easy going person on the planet) hadn't put her foot down. I dropped everything, drove over there, she signed herself out, and I took her home.
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My mother is in an NH, can't do anything independently, requires a lift to get out of bed, and has mild dementia. Before the NH she was falling 6-7 days per week and required a lift assist from the fire department.

My mother also asks me most days to go home. She doesn't have a home anymore as my father died when she was in the NH for respite (she stayed after his death). She is well cared for and is in better physical and mental shape than she was before she went in.

The only way she could leave the NH is if I bought her a house and a full-time carer as I don't have space in my home and I don't want to care for her. That will not happen as I currently don't have the financial means to make that happen. I have young teen kids and a full-time job so there is no way I could provide her with any level of care.

Sometimes you have to make hard decisions for both your own sanity and the safety of your mother. Based on what you say above, I think she is in the best possible place. When my mother asks to go home, I deflect or say that we need to discuss with the doctors.

I think the anger/sadness/depression most elderly feel is for the loss of their independence, which they will never regain. I know if my mother was at home she would feel she doesn't need help, even though she is incapable of doing anything on her own. It is hard, makes me feel guilty, but for me (and sounds like you), the only option is an NH.
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autumnsfalling Mar 2022
I agree with you. Her living with us is not an option given the amount of care she needs. For her to live outside the facility I would have to pay for everything 100% and cannot afford that. Where she is, is the best place for her - it really is. It's a good, clean, friendly place. Her room is at the far end of the facility from the front so I walk the entire facility each time I visit her. I am never disappointed by the level of care I see the residents receiving, state of the facility, etc. I know she's safe there - and loved! I just struggle with how to handle her demands to leave when I know there are no other options given her physical and mental state. It is very helpful to hear voices like yours, that have struggled with something similar.
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Possibly request her MD order PT/OT for her? Did she have after the stroke and did she progress? Did she understand that she had to really try if home was the goaL. It can be done at the subacute level-in skilled nursing facility but better at an acute rehab facility. At least then it would not be a lie to tell her- if you are able to process with therapy to where you can walk with a walker. Transfer from bed to chair and handle most of your activities of daily living-toileting, feeding, dressing- then we could consider home with daily aide. I wonder if PT through home health care could come to her facility? Ordered by her MD. Might get better PT that way.
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autumnsfalling Mar 2022
She is getting PT/OT and speech therapy - each multiple times per week. She can decline the therapy if she's too tired or doesn't want to, but she only occasionally declines. I speak with the director of therapy regularly to get updates. She overall hasn't improved since her stroke and has had additional decline. She started at a level 3 when she arrived there and after about 4-5 months increased to level 4 care. After about 9 months there she was diagnosed with dementia. With eating/drinking she holds food and liquids in her mouth for long periods of time. She needs reminders to swallow. Without a reminder to swallow, even if she wants to talk she'll just make a 'mmmmhhhmmm' sound because of stuff in her mouth.

Sometimes she'll tell me it's the fault of the therapists that she's not physically in better shape (she cannot take personal responsibility for anything). The therapists tell me that she does participate and has made progress in her strength (hasn't fallen in months) but my mom's expectations of her own ability are not reality-based. She thinks if they did their jobs better she'd be able to just stand up and walk out of there and go up and down stairs with no problem.

Mom's denial of her situation is profound and it's difficult because she is 'with it' enough to remember and argue/demand about leaving. Personally I think that her dementia is mild and her body is at a much more debilitated state than her mind (except for her level of denial).

It is all just so heartbreaking.
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Let her! Sometimes tough love is all they will understand....
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What if one day you're in her exact same situation? How would you want your kids to handle it?
Although she has early dementia, she, like everyone, has the right to be happy. Is there any place else she would be happier? When she says she wants to leave, does she say where she wants to go? Would she be happier living with you with a full-time aide?
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bundleofjoy Mar 2022
“What if one day you're in her exact same situation? How would you want your kids to handle it? 
Although she has early dementia, she, like everyone, has the right to be happy.”

very much agree.

dear OP: only you know the whole situation. i hope it’ll all work out for your mother, and you.
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Could there be possible for your mother to go home if there's live-in caregiving help?
I'm sure you can imagine what's going through her mind. She may not even have mild dementia. Every senior gets diagnosed with dementia when they are in a nursing home. Being in one certainly will affect a person's mind and cognitive abilities.
Don't lie to her. Stop trying to deflect and change the subject. Don't do this to someone who is still mentally with it enough to know you're doing it.
If she wants take you off POA, explain to her that what will happen if you give it up is the nursing home will petition for conservatorship over her and they will win. They will get whatever doctor they use for their facility and probably a dozen others to sign off on her having dementia. This is what will happen. Try being honest with her because she might do better with the truth.
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bundleofjoy Mar 2022
great answer and warning.
hug!!
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You are doing the right thing keeping her safe and I think your mom's claims to revoke your POA and sign out are baseless. Now that your mom is safe and cared for physically, the real issue is that you keep her as happy as you can. Of course, she wants to go home-who wouldn't? It's going to take some time before she accepts her new living arrangement - but you can try to make it as pleasant as possible. Some may disagree but I'm not averse to white lies to keep her mind at ease - "I'm looking into it". "We're going to get you re-evaluated". "We have a meeting about it next month". "A little more progress first Mom". The point being she needs to feel heard and validated.
Get her to socialize and participate in activities there by joining in the first few times. If she is religious have a clergyman visit. A social worker can work with her through some of her feelings of abandonment and loss of independence. Visits, calls and cards from friends and family should be encouraged. Any hobbies or activities she enjoyed before can be brought in some fashion to her, plants, puzzles, music, crafts, knitting, etc. If she can see her life can still be rich and she can have things to look forward to, hopefully in time she will feel less alone and more useful.
I know it is gut wrenching to see your Mom emotionally distressed and you are torn because you love her so much. Even though her disabilities seem minor or in the early stages, they are enough for you to know she cannot live on her own without inviting disaster. This part is the hardest for both of you to transition to and accept - and like anything else - it will take time, patience and compassion for your Mom and for yourself. I wish you the best.
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BurntCaregiver Mar 2022
NYCmama,

I'm certainly adverse to "little white lies" when a person is still with it enough to know they're being lied to. Or when a person isn't going to forget a minute later.
When a person doesn't have dementia and still in possession of their faculties, they do not have to accept their new living arrangement in a nursing home.
No one should be deprived of their liberty when they're still in possession of their own faculties. Being handicapped and old is not a good enough reason.
I've worked as an in-home caregiver for many people who were handicapped in wheelchairs and more than a few had suffered strokes. Some couldn't dress themselves and needed help with most of their ADL's every day. They still managed well enough to live on their own. They needed help and had it. They were mentally sound enough to not have to live in a nursing home.
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Some of these answers were great! You definitely have a problem on your hands. My father had dementia, and it progressed, but he was happy let us make the decisions (although we never kept anything from him and included him in decision making). We were also able to take turns and then hire someone to come in to keep him in his home.
HOWEVER, the stroke is what concerns me. My aunt (my Dad's sister) had mild dementia, but also went through 2 strokes. Her son was able to get her into a great assisted living place, where she enjoyed her life, making friends, and was the life of the party. Maybe the difference is where your mother is. IN the end, when she is gone, you will want to look back and know that you made the best decisions for her with no regrets, and if needed, money well spent in getting that accomplished. Find out through all of this good advice the legalities of all of it, and if she could be in danger being alone having had a stroke (scary if she still drives), then you will have to do something. Hugs to you and God bless you in this journey.
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I feel so sorry for anyone who has to go to a nursing home that is worse than being in hell
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AnnReid Mar 2022
I’ve already expressed my intent to go to my beautiful local “…worse than being in hell (sic)……” nursing home when/if the time comes.

“I feel so sorry” for people who make blanket statements about providing care when all other alternatives have been exhausted, without acknowledging that some caregivers CANNOT sustain a level of care that meets the needs of their LOs without becoming permanently damaged themselves.
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Has anyone suggested that you make arrangements for a geriatric specialist “visit” her in her residence and do a psychological/psychiatric assessment there?

It was the key tool for us. Holding POA AND a formal psychiatric evaluation over rode any concerns about how well my LO could do and confirmed her need for supervision and support, even though she “seemed” fine.
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Can your mom revoke the POA she granted you? Maybe. In one of your replies, you mention that a competency ruling is included in the POA. Has she been ruled incompetent to make her own healthcare decisions in a court hearing by a judge? If that's the case, a dr. cannot overrule a judge's decision, nor can she void the POA for healthcare. It doesn't sound to me, however, that she's been ruled incompetent.

Many people equate dementia with incompetence and/or incapacity from day one. Not so. Early dementia does not automatically mean incompetence or lack of capacity. I believe your post is not a matter of competency, but one of capacity. Capacity refers to your mom's ability to make rational decisions and understanding the consequences of those decisions relative to her healthcare. Competency is determined by a judge, capacity by a doctor.

Dementia symptoms caused by VaD or another dementia related disease, progress over time, ultimately causing complete dependence on another for a person's existence. Generally, the agent (you) can make decisions for the principal (your mom) when she no longer has the CAPACITY to make rational decisions for herself and doesn't understand the consequences of a decision. Patients with dementia cannot be assumed to have impaired capacity.

You say her dementia appears mild to you, and the symptoms you describe, word finding and miss-speaking, are certainly early symptoms. Despite her physical challenges and level 4 care she requires, and even her denial of her situation, her capacity to make rational decisions may not be compromised to the extent that you can override what she wants. So, the question is, does your mom have the capacity to make her own decisions? Does she clearly understand the consequences of changing her POA? The fact that she can't physically take care of herself is irrelevant to her being able to make rational decisions.

I'm not saying that you can or cannot make decisions for her, or that she can or cannot revoke the POA. Having dementia doesn't automatically preclude her right to making her own healthcare decisions. Talk to her atty and dr. to discuss her decision making capacity. Her doctor can rule on that.
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bundleofjoy Mar 2022
“Competency is determined by a judge”

yes.

“I'm not saying that you can or cannot make decisions for her, or that she can or cannot revoke the POA.”

yes.

“Having dementia doesn't automatically preclude her right to making her own healthcare decisions.”

yes.
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I’m not sure if this has been covered, but it could be good to get one of the Medicos who has dealings with her, to sign a statement that she no longer has legal capacity to make decisions in her own best interests. More than one might be even better. That would include her inability to revoke POA, sign herself out of care etc etc. It’s more influential to get this in advance, than to fight about her competence after she does the wrong things.
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hereiam Mar 2022
Hi! I think the only way to get someone declared mentally incompetent is to go to court. (This is to protect people.) (Such a declaration is very serious; and in order to prevent doctors/family/anyone from over-using this declaration, the procedure in place is: court).
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Don’t visit her often. Only once in a while. However, take a couple of weeks off. Do not sign any of her nonsense papers. She’s where she belongs & only trying to manipulate/abuse you. Hugs 🤗
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Tonia722020 Mar 2022
wonder how you would feel in a nursing home the way you sound you may wind up in one
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Can you make her a "Ward of the State?" An Elder Law Attorney would be your best bet, I'm sure.
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I am sorry for your situation.

Your Mom is fighting hard to keep her independence - her brain doesn't see the stroke robbed her of it.

She is blaming you. Often our nearest & dearest cop the fallout of our real emotions.

If possible, change the 'Headline' to Blame the Stroke. I think that has worked somewhat with my Mother.

I think Vascular Dementia is very hard. Long & short term memory can be quite intact so strategies like distraction just don't work. Pills for anxiety/depression can work to reduce some of the depth of emotional pain.

I like what 97yroldmom said
"Could she see a mental therapist or someone from her church? She has a lot to deal with". I see you already have someone she can talk to.

I think a few chats with a Psychologist did help my Mother, to set some achievable goals. I see you already have that too! Work at PT to get stronger etc

I think you are doing everything that can be done. A safe place, PT, meds, psych.

So as Counytrymouse said so simply & beautifully "sympathsize & wait". Wait this stage out.

Friends with parents further along have found the blame slowly slid away, along with other skills. One has a whole new Mother now. From angry at family all the time to quite mellow. It's a mixed blessing. The anger has gone, but so have many more parts of her personality. They can grieve now though.

This small saying helps many: This too shall pass.

A BIG (((hug))) to you
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Whether your mom has 'mild' dementia or advanced dementia makes no difference, really. She has dementia and cannot live alone, and a level 4 of care in her SNF is the exclamation point to that statement. She suffers from what's known as "anosognosia" which is when a person who's been diagnosed with dementia refuses to believe or acknowledge they have any problem at all. My mother was one of those people, with advanced dementia, until the day she died. You won't be able to convince your mother otherwise, either, so don't bother trying.

Bring her the POA papers, what's the difference? She's not going to be able to DO anything with them anyway, nor can she make any changes to her POA since she has dementia; she's incompetent to do so. But allowing her to 'look things over' may calm her down, and that is the goal for you: to calm mother down. Taking her out of the SNF is not warranted, and a bad idea to boot. She can certainly 'breathe' quite well there, believe it or not, and she also has freedoms! SNFs are not prisons, and the residents do have rights. Those who start shooting their mouths off about "killing themselves before being put in a nursing home" really have no business commenting on a post that's asking for help with a mother who LIVES in one! My own mother lived in a Memory Care ALF (but was headed off to a SNF in short order) for nearly 3 years before she passed rather unexpectedly last month from heart failure. She was treated beautifully by a loving & attentive staff & had no horror stories (nor do I) to share with anyone about the ALF. Neither one of us tried to commit suicide over her necessity to live there, either, I'm happy to report.

Learn all you can about dementia, and how to interact with your mother in the least confrontational manner possible. I suggest you read this 33 page booklet (which is a free download) which has THE best information ever:

Understanding the Dementia Experience, by Jennifer Ghent-Fuller 
https://www.smashwords.com/books/view/210580

Here is a list of useful tips from her e-book I found to be excellent:

The “Dont's”
· Do not reason and argue
· Do not demand that they reason or problem-solve
· Do not demand that they remember
· Do not demand that they get their facts straight
· Do not correct their ideas or scold them
· Do not reorient them
· Do not think that they are being uncooperative on purpose
· Do not think that they really do remember, but are pretending not to
· Do not use a “bossy” dictatorial attitude in care
· Do not act with impatience

The "Do's"
· Enter into their frame of reality, or their 'world'
· Be aware of their mood or state of mind
· Use few words and simple phrases
· OR use no words, just friendly gestures and simple motions
· Do everything slowly
· Approach from the front
· Wait for a slow response
· Constantly reassure them that everything is 'OK'
· Keep people with dementia comfortable 'in the moment' - every moment
· Maximize use of remaining abilities
· Limit TV or radio programs which they may feel are frighteningly real
· Maintain privacy
· Provide a safe physical environment

When mom wants to be let out of there, or go home, simply tell her "when the doctor says you can leave, then we will discuss it." Then change the subject/use diversion/offer her a snack/take her outside into the sunshine. I was used to being The Bad Guy with my mother after 10.5 yrs of being her POA & advocate. I did everything in my power for her, but dementia destroys their brains, so they can't see the reality of that fact. It's tough, what we go through, but it's all for THEIR benefit. You are not doing 'anything wrong', either; it's the DEMENTIA that's causing your mom to BELIEVE you're in the wrong & she's in the right. #Truth.

Wishing you the best of luck with a tough situation.
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lijosmith Mar 2022
Thank you for your thorough response & detail! Helped me immensely, too! You are all amazing (ok, MOST of you) and hope someone eventually shows you the same compassion. Hugs!!
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This is just my opinion. I don't see the need to slow Dementia down when there is no cure. It just means you are prolonging a life that there really isn't any quality. If a medicine stopped Dementia in its tracks then I would be all for it. I watched my Mom decline. I would have loved for her to live past the age of 89 but not with Dementia. They are not there anymore. Besides short-term the long-term goes too. Its not fair that loose all the memories they had. I rather not be here.
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lealonnie1 Mar 2022
Amen to that JoAnn. Prolonging the life of a dementia sufferer is an act of cruelty, IMO.
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You have done everything right. Do not listen to the naysayers that pop up and tell you to take your Mom out of the facility. Most times, they have NEVER had to make decisions for someone with a dementia.

Someone with a dementia will not remember that they can no longer take care of their own ADLs. This and unsafe decision making create a situation where they are no longer safe.

As POAs, we have to step in and make decisions FOR them.

As Alva says, a person with a dementia may never become happy about decisions you make. She reminds us that not everything can be fixed, and that we may feel grief over those things. And, having a parent with dementia causes us to feel one grief after another. Those of us with LOs with dementia understand.
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autumnsfalling Mar 2022
Thank you - I'm trying to keep her safe. When (before the diagnosis of dementia) we were getting her POA paperwork signed I promised her that I would do everything I could to keep her safe and healthy. I told her it may not always make her happy but her health and safety were my first priority. She agreed at that time. But now she wants me to make her happy and is blaming me when she is not (which is frequent). Thank you for your words of support - they really do help!

I do feel grief, sadness, frustration, and lots of doubt. It's a hard place to be.
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Look up Teepa Snow videos on YouTube. She is helpful in demonstrating ways to communicate with someone with dementia. Your moms broken brain won’t be able to grasp the idea that she is wrong. Never correct or argue with her.
Trying to convince her she is wrong will not bring her comfort or peace and will only frustrate you. When you notice you are about to correct her, pause, tell her something positive and move on.

Your mom has two major issues.
Her stroke recovery/maintenance and her dementia.
The dementia is the part you are struggling with. The therapy is all in place. Great job on getting her where she can receive ongoing therapy.

The dementia piece is tricky. You are the one who has to change. You have to meet her where she is. She needs to trust you. To see you as her protector. Maybe it is just me but I would want her to have all the hope in the world, false or otherwise.

1) THIS WON’T CHANGE
“She insists on believing what she wants to. Doesn't matter what we say.”

2) STOP THIS PART
I've had many conversations with her telling her that the therapy is to make her strong enough so she doesn't fall and that she can swallow better (and choke/aspirate food into her lungs). I don't want to cause her undue mental stress, but I worry about the level of false hope she has. I don't know that it will ever change, but

3) WORK ON THIS PART WITH A NEW APPROACH/PAT ANSWER AS GEATON AND MJ SUGGESTED…It will get easier.

“I struggle to handle her questions/demands about leaving when I know that it's not realistic.”

It does not matter that it’s not realistic. She is living in the moment. In the moment she is happy with her recovery. Let her have that. She will not remember that it isn’t enough to release her to her own life and away from all of you.


Oh Mom, you are doing great. The doctor will be happy to hear it. Do you like that new applesauce?

No long explanations necessary as they are not helpful.
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autumnsfalling Mar 2022
This is very helpful - thank you!! I do need to know what I'm doing wrong so I can do better. I've never dealt with this type of issue before handling this with my mom. It's all new territory. I have a great support system, but none of them have had this experience either. I need to find the right thing to say and then just keep repeating it to her. You, Geaton and MJ are right. I appreciate the help and support in navigating this!!
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