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Question from a daughter - what would you want?
Posted: Sunday, August 30, 2015 1:47 PM
Joined: 7/21/2013
Posts: 259

Two dementia “experts” are at odds of how best to help my mother and I really need to know what you would want, if it were you. One expert is a visiting geriatric care manager (GCM), who specializes in dementia. The other is a neurologist at a prestigious University Hospital Memory Center who has seen my mom 3 times since last year.

I hired the GCM to help my mother adjust to living in assisted living when I moved her across the country 18 months ago. I didn’t think it would be a forever arrangement. She deeply believes nothing is wrong with her and is still insisting she will move home. I know she can’t, without my help.

The GCM visits her in the ALF once a week and provides counseling. The counseling ranges from listening to her complaints to what his boss calls “reality therapy”, addressing her delusions. This seems to go against what I’ve read on these boards: that we need to enter her reality and provide distraction and validation of her feelings. He has visited her once a week for the last 18 months. And according to his latest report, she uses him to “elicit his professional opinion on her cognitive abilities”. His boss says his visits are “keeping her stable”. I do think they have a strong relationship now, but I worry that he stirs up these negative feelings and keeps them fresh, on the surface, and that may actually be keeping her from settling in.

The neurologist, who we saw again last week, says this therapy is actually harmful, in that she "has dementia and fixated delusion that are best managed by distraction not reinforcement.” He wants us to stop. But since they have a relationship, and he comes to the building to see clients, she will continue to see him around and probably want to talk to him.

If you were my mom, would you want someone to come by every week and provide this type of counseling? He is not employed by the ALF, and therefore can act as a mediator between the resident and the facility as her advocate. Or do you think it’s keeping her agitation fresh and upsetting her when he tries to add a dose of reality to her delusions?

I don’t know what to do!! I just want her to be at peace.

Thanks and bless you all for being on this board to give immeasurable insight into what Alz is really like.

Mimi S.
Posted: Sunday, August 30, 2015 3:35 PM
Joined: 11/29/2011
Posts: 7027

Hi Far away,
I do have dementia, but i can't answer your questions.

I recognized myself what was happening and got diagnosed. So I know i have AD and am very proactive my own care.

So your mom and I are nothing alike.

I certainly do agree with your neurologist. Do ask your librarian for any Naomi Feil book with Validation in the title.

You can tell the geriatric care manager whatever you like, money is short, he's accomplished a lot, etc. You no longer need his services. You do hope he will stop and greet your mom if they meet.

She probably has no concept of time, so may not realize his visits have stopped.

Does she have a religious faith? Belonged to any group that might provide a weekly visitor? Sounds like all you want is someone to visit her regularly. You might even find some retired person to pay to do that. And the cost should be a lot less. Geriatric Care Managers usually don't provide counseling that I've heard about. They make sure bills are paid, meds are ordered and that she is being well cared for. Have any of those types of services been provided?

Iris L.
Posted: Sunday, August 30, 2015 3:40 PM
Joined: 12/15/2011
Posts: 18357

Hello, FarAway. Your question is, if we were your mom, would we want the visits by the GCM? We know that people with advanced dementia do not always want what s best for them, because their judgement is impaired. We patients need what will keep us calm and not agitated. This caregiving concept is discussed frequently on the Caregiver board.

I have worked with three GCMs, and I was not impressed, even though they had great credentials on paper and years of experience. The way they approached me was different from what I learned from the caregivers on this board. In any conflict, personally, speaking only for myself, I would trust what I learned from the caregivers over what I hear from an outside professional.

I would suggest that you post this on the Caregiver board. This is the type of question that could be disturbing to patients with dementia. This is disturbing to me personally, because it only reinforces my conclusion that outsiders and professionals do not really understand people with dementia, and that I am right to be scared out of my wits at being at the mercy of clueless professionals.

I hope you do not see this as an attack. I am expressing my true opinion.

Iris L.

Posted: Sunday, August 30, 2015 5:56 PM
Joined: 7/21/2013
Posts: 259

Iris and Mimi, I am so grateful for your thoughts and I didn't post this on the caregiver forum for a reason. I don't mean to upset you. I just want to do what is most helpful for my mother.

I wanted to find out if the person with dementia would want someone to talk to on a regular basis about their fears, negative feelings, concerns about the changes in their life.

The GCM is a Licensed Marriage and Family Therapist, who says he specializes in dementia.

And I am also scared of "so-called" experts, if they doesn't provide what my mom truly NEEDS.

Iris L.
Posted: Sunday, August 30, 2015 6:37 PM
Joined: 12/15/2011
Posts: 18357

FarAway wrote:

I wanted to find out if the person with dementia would want someone to talk to on a regular basis about their fears, negative feelings, concerns about the changes in their life.

Far Away, I could hug you for asking this question in this manner. Yes, the person with dementia does want to talk about her fears, negative feelings, and concerns about the changes in her life! At least, we patients on this board with dementia want this. The problem is that most patients with dementia are not like us.

In your mom's case, you spoke of her as believing that there is nothing wrong with her, and believes she can return home and live independently. Your mom has anosognosia, which is a common characteristic of advanced dementia. Your mom truly believes she is fine. What helps in this case is validation, i.e., acknowledging her feelings, making her feel secure, and redirecting the subject in a subtle way.

Validation Therapy is promoted by Naomi Feil. She has books and videos and puts on conferences around the country. Speaking frankly, your professional GCM should know this and should be explaining this to you as I have explained it.

From the little that you wrote, it appears that the GCM may be using professional jargon in his report to you.

according to his latest report, she uses him to “elicit his professional opinion on her cognitive abilities”.

To clarify, allowing your mom to express negative feelings is not wrong. But allowing her to remain in negative feelings is wrong. If you read several pertinent threads on the caregiver boards, especially from members who no longer feel comfortable visiting their LOs, you will read guidance from other members on how to get their LOs into a better frame of mind, and how to make the visits more productive. This is what your GCM should be telling you.

What I have learned is that the members of these boards know more about caregiving for people with dementia than the professionals. If so, why pay good money to them? A few members do report good experiences with GCMs, so I cannot say that they are all useless.

I suggest that you hire a woman, possibly around your mom's age, to be a "friend" to her. This cg can take your mom to activities, possibly on outings to Walmart or to the park or wherever it is safe for your mom to go.

The GCM should be telling you that patients with dementia have a hard time initiating activity on their own. Your mom is not likely to look at the activity schedule and decide she what she wants to participate in, and get herself to that activity. This is a function of the dementia. She will be slow to be comfortable with new people, but it can happen with prompting and cueing.

Please also search out topics on "I want to go home" on the Caregiver board. It is wrong to feed into. The caregiver responses show how to gently divert the patient's attention away from going home and onto another topic. "I want to go home" is a common theme.

Here is an article that explains anosognosia in detail. The main thing is the lack of awareness. Once this is gone, the patient must be protected from herself, because there is also the loss of judgement.

You did not indicate how your mom came to live in assisted living. It is detrimental to tell patients that they cannot take care of themselves any longer. It is better to "blame" it on the doctor: "the doctor wants you here for a while" or "blame" it on the house: the house has termites and needs extensive repairs. Use one of the creative responses that the other caregivers use. This may fall into the category of "therapeutic fib."

The best response is the one that gives the patient the most comfort. It is not a comfort to say, "Mom, you almost burned down the house so I put you in assisted living where they can keep an eye on you!" This may be the case, but it is not a comfort for the patient!

Does the GCM say anything like this to you?

I was a professional myself and I never knew any of this. I learned all of this on the boards from the caregivers.

Addendum: Far Away, the reason I want to hug you is because you just validated my feelings. I do have negative feelings and fears that I want to talk about. Just the fact that you acknowledge my feeling, lifts my spirits. You did not have to solve anything, just acknowledge. This is what validation is all about. Bless you!

Iris L.

Michael Ellenbogen
Posted: Sunday, August 30, 2015 7:15 PM
Joined: 11/30/2011
Posts: 4384

I agree with Iris. It may help to speak with someone if you know you have the issues and then you welcome it. Sometimes it may even be beneficial from reliving some of the stress and maybe even learning a few things depending what stage you are in. I have come across many with this disease who were in denial or did not believe they had it. Most I was able to change their minds. One needs to help prove it by showing the person and keep track of issues so they can see for themselves. Hell if you cannot remember how can you tie it all together. .

Posted: Monday, August 31, 2015 7:37 AM
Joined: 9/12/2013
Posts: 3608

I can tell how much you want to help your Mom.

Everyone is still the individual they were before, and her desire to "go home" probably does not mean what you would think it means.

Home is where one feels wanted, safe, comfortable. WANTED.

My own daughter is trying to find me a place to live while she lives in California and I live in the woods of Upper Michigan. I raised my kids in California, worked in Florida to help them through college and to help care for my dad who had ALZ, then moved back to my U.P. because this is where I feel at home.

My daughter is getting advice from professionals too. My dread is to be placed more conveniently for her and maybe my son to visit on occasion. A warehouse is what it sounds like to me, yet this is affirmed by professionals as what would be the next best step.

My children have their own lives, and I love them and miss them. But I would prefer to die walking my dog on a gravel road through the woods than be "placed" some where they could get to for my dying moments.

What mattered to your Mom before dementia? Give her that.

Oddly I wrote to my children just before seeing your post today and told them as much. They are not thinking how important it is for me to look at stars at night, to watch snow fall, to feed birds, to lay in the sun with my dog, to go to my tiny church.

They would "find me another church", I could "pet their dogs".

The guy who visits your Mother is making a living. he does not love your Mom. No one in the nice place loves her.

This is the predicament. I so wanted to die at home, to spend the end of my life around people who wanted me. While I can not guess what your Mom is thinking and feeling, does it not seem likely she wants what every human being wants and needs?

it is a shame families have become so ... dare I say? useless.

I remember a quote, "I have seen people with dementia happier in a mud hut surrounded by life long companions than sitting alone under a chandelier in assisted living."

If my children gain control of my life it will be for their convenience, even though they love me and I love them. so they can go back to their lives and not feel guilty about Mom.

Hopefully I will have a heart attack before it gets to that point. And I have a husband who hates his life as a caregiver/driver/grocery person.

I saw a movie once about a woman who insisted her husband put her in assisted living and she feel in love there with some one new.

My best friend took care of her mother and father in their apartment. Lots of money, all the nice stuff. Her father went nuts and begged to go to assisted living and took up painting, her Mom went to my friend's home and died their quite happily.

My Dad stayed home with my help until he broke his hip, I spent the last 10 nights of his life with him and loved every minute. I would not have left him alone anywhere.

I wish you the best and know your heart I in the right place. Authorities are wrong about most of dementia. Love to your Mom from me.

Posted: Monday, August 31, 2015 9:06 AM
Joined: 5/20/2014
Posts: 4408

alz+ wrote: Everyone is still the individual they were before, and her desire to "go home" probably does not mean what you would think it means.

Home is where one feels wanted, safe, comfortable. WANTED.

Home is more than a building to someone with dementia. I want to go home to a person with dementia is a power packed statement with many dimensions.

Mom seems to like this guy paid or unpaid and he is fulfilling a need for her to have someone to talk to. I would not take him away until you transition another person into the picture first and allow him to have some closure for mom's sake so she does not feel abandoned. She likes this guy and he must be validating her in some way. Give mom time to get used to a new person while he's still in the picture. I would talk to him about whether or not he is actually doing reality therapy and consider that it may be his boss who does not know what he is talking about. No one really uses reality therapy these days as it is not an evidenced based practice or best practice and was mainly used with youth and persons with addictions. Also consider that the GCM may have chosen this field because he actually has the capacity to genuinely care for others. I work with some folks for whom we are actually the family and I and some others genuinely love them and care for them more than the family is capable of. The family may have exploited them for money or abandoned them, does not understand severe and persistent mental illness or just cannot deal with them. It is sad but true!

Posted: Monday, August 31, 2015 12:24 PM
Joined: 7/21/2013
Posts: 259

Thank you all so much for your thoughtful responses. I can't tell you have much it helps to get your advice.

Alz+, my heart breaks for you and wish you all the best. Are you moving anywhere close to San Francisco? I have been so amazed by your spiritual journey and only hope to be as enlightened someday.

Iris, you made ME cry! Thank you!

llee08032, I like your suggestion about easing the transition to more of a companion, and I googled "reality therapy" and agree it seems to be counter-productive. I will speak with them about all this.