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?
Tell her you'll bring the paperwork once her doctor ok's her to leave on her own unassisted. Don't let it bother you...she may not relent so just keep your story the same. That's as much as you can do.
Her pulse returned to a normal rate and she is more cognizant. This was added after she had anesthesia and perhaps the anesthesia hadn’t cleared. She did have signs of dementia before but it was increased after the hospital stay.
I only mention this because sometimes we cause problems by treating symptoms. The aricept has not proven to cure but some believe it slows dementia for awhile. I wish I had never agreed to it for DH aunt. Many people take it.
Your mom will hopefully continue to improve from her stroke. That also can take a long time. Is she continuing to receive occupational or physical therapy? I sure hope so.
I would also deflect as Geaton suggested, encouraging her to get better before considering a move.
“The nurses/staff know that her stay is permanent and don't mislead her.” Are you saying the nurses tell her she can’t go home? I might have a conversation with them so you can all be on the same page.
Could she see a mental therapist or someone from her church? She has a lot to deal with.
If she is truly incompetent, as well as handicapped, then I’m not sure she can revoke your POA. I wouldn’t think so.
Oh and it is so easy to convince ourselves nothing is wrong with their mind because sometimes, nothing is and then the next day, you see the dementia clearly. It’s hard. Big hugs.
When I said that the staff knows her stay is permanent and don't mislead her what I mean is that they don't say 'do this and you can go home'. We don't want to give her false hope when we know it's not realistic. They encourage her through her multiple therapies (occupational, physical and speech) to improve so she can be safer. I've had many conversations with her nurses, therapists and the Director of the facility. Mom hears 'encouragement' from nurses/therapists and misconstrues that as she's going to get well enough to leave. She insists on believing what she wants to. Doesn't matter what we say. 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 I struggle to handle her questions/demands about leaving when I know that it's not realistic.
There is a psych Dr. that visits her at the facility and diagnosed her with depression and anxiety disorder. We had tried taking her off her depression med when she seemed to be doing better, but she quickly reverted back into a depressive state so we had to restart the med. She does better on it.
She is completely convinced that nothing is as bad as me, the nurses, Drs, etc say that it is and blames me (and the rest of us) for her current situation. It's just hard to deal with.
I appreciate all the feedback - it really is helpful to know that others understand how hard this is.
Do know that your MOM may NEVER own it and accept it. She is no longer competent.
That is why you must now act for her.
SO........do discuss with the facility so that they are aware; make certain they have the paperwork. Sign what you must to hold her.
THEN go to Mom and tell her that you are now her POA. That you are acting in her behalf now because she isn't able to make competent decisions for herself. That no one wanted this duty less than you do, but now you are responsible for her safety. Tell her that it is now too late to do anything about the POA.
Warn the facility that you are to be notified just in case your Mom is capable of calling doctors. Many elders with dementia are capable of confabulating well enough to fool an attorney short term. Tell the facility that any attorneys should be warned that Mom is no longer competent.
SHOULD Mom get any attorney with no one knowing this could become a court case in which you would need to get guardianship over Mom, and do know that without a DIAGNOSIS from two MDs and letters attesting Mom is incompetent she may win.
At that point, were it me, I would withdrawn completely, and notify APS of adult at risk. Do not enable anything outside the facility.
So sorry. This is major tough. But this isn't something you can dance around. You must take the reins so to speak.
I am trying to do everything right it's just hard when mom's fighting so hard against everything and is blaming me.
Mom isn't capable of calling anyone. She can't even dial my phone # (which hasn't changed since the late 1990s. The nurses told me that they have offered to help her dial me and she doesn't even want to try.
I worry that she will try to convince her Dr. to sign the competency form that was included in the POA paperwork (which would revoke my job as POA) but I don't think that any Dr. worth their salt will sign that form with someone with a diagnosis of dementia and on Aricept. However, she can be very convincing at times. Then other times she'll say something "off" and I'll think, "oh, there it is... there's the sign of impairment". I hate seeing those signs but in another way it's reassuring that she is in the right place.
I do understand my opinion is limited by not knowing all the facts.
I wish everything good for your mother and you.
If your mother has the funds to stay in a facility, would she have the funds to live at home? A small home, with live-in care? Sometimes that’s impossible, but I mention it anyway. I don’t mean you living with her.
It’s possible that if we ourselves would live in a facility, we would desperately try to get out (for good reasons) (the reasons aren’t always stupid).
We are young. We haven’t experienced yet living in a facility. There are great ones. There are bad ones.
I have a friend (she’s a good woman), who put her mother in a facility. The mother needs a lot of care.
My friend told me, she herself would never want to be in a facility, and would kill herself before.
What I mean is, my friend somehow thinks “this is not for her”, but is willing to put her mother there.
Sometimes, there is no choice - someone must be placed in a facility.
Your case might be like this.
I ask only if there’s any chance for your mother to live in a little home/apartment/something.
She might prefer to live a while like that (breathing in life again, some freedom) (with live-in care), instead of institutionalized, surrounded by many sick people, etc., other reasons.
Wishing your mother and you luck!! I’m certain you’re already doing your best!
Here I Am
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.
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.
I do feel grief, sadness, frustration, and lots of doubt. It's a hard place to be.
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.
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
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.
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.
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.
“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.
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.
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.
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.
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.
hug!!
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?
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.
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.
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.
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!
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.
:)
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!!