For a couple of years, Flip and I have attended a support group run by the Alzheimer's Association of Northern California and Nevada. They divide participants into two groups, the diagnosed and their caregivers, which meet in adjoining rooms. Each is run by a facilitator. Flip has complained to me several times that the woman who leads his group has been mean to him. She has scolded him, treated him like an imbecile when he tried to contribute to the group, and on one occasion, said, "Just spit it out already" as he struggled to express himself verbally. One of the symptoms of this disease is the increasing inability to do so.
It's possible that he misunderstood her intentions. Since I was not there, I can't say for sure. But I think she's a bully who believes that those in her group lack the capacity to report her treatment of them. If so, she underestimates them, and perhaps she overestimates the degree of job security she has. I would think very seriously about going after someone's job, but it is unacceptable for Flip and other victims of this disease to be treated with anything less than respect and kindness.
We have not attended the group much the last several months despite our need for any support available. There is something terribly wrong when someone in an Alzheimer's support group feels ostracized for showing symptoms of Alzheimer's by a representative of the organization founded to fight the disease. It makes you wonder.
27 comments:
My close up experiences with my father's Alzheimer's included multiple examples of paranoia. Go with your partner and evaluate for yourself. I am very sorry that anyone must face this most difficult disease. There is no good outcome for which one can wish. There are, however caregivers who are angels and they make all the difference.
Rider,
I do go with him, but the diagnosed people meet in a separate room from the caregivers. That is the way it's set up. But thus far, my husband has not demonstrated any evidence of paranoia in general, and the lady in question has recently been demeaning toward another member of the group.
I'm sorry about your experience with your father. It is truly a dreadful disease with no possible good outcome.
Speaking from a weird postmodern kind of place I want to put forth the idea that it doesn't even matter whether the incidents happened exactly the way your dear husband perceived them or not (though I'm inclined to believe him), it matters that he is distressed by this woman and doesn't like her. That's his reality and I love you for respecting his reality.
Is there any other group you can join? SF is such a big city... isn't there *anything* else? Or, do you have the energy to start your own group in your living room? Seriously, like a book club... four other couples and you'd have an incredible network of support right there. Local hospitals might be able to give you information?
Hard to believe that a woman who invests so much energy into supporting others cannot find the same when she needs it. I hope something good happens... you deserve it. xx
Is there anyone you can report her to? Because if she is ugly to Flip, it may well be a pattern and someone should know. Working with people on the caregiver side of it, I've often talked about the need for patience in understanding the difficulties with expressing thought. It's a cruel enough disease without someone adding to it.
Surely patience and understanding are the basic requirements for anyone dealing with any serious disease, particularly those like Alzheimers where self-expression is so difficult. It sounds as though she's not suited to the job at all.
As Mischief said, are there any other sources of support? My sister is in internet contact with loads of people with MND, carers and health professionals and gets huge support from them.
I work with children who have autism. I can't tell you how many abuses have been reported to me by these children regarding those that are supposed to be helping them.
First step for me in your shoes would be to talk to other caregivers about their loved one with Alzheimer's. If she is treating your husband badly, she is probably doing it to others in the group as well. And then, ask to meet with her WITH her supervisor with a list of grievances.
I'm so sorry that in addition to all you do, that you now have this on your list too. This sucks.
I've read all the comments and must say that I have a much stronger reaction to this woman. Not for one second should you go without the support you and Flip need, nor should you tolerate any type of abuse. NOT FOR ONE SECOND.
If she is abusing Flip, she is abusing others. Talk to the other caregivers to see if there are any other reports. There is strength in numbers. If so, all of you must go to her supervisor or the parent organization. This woman should be removed immediately for this position. She is unsuited and is doing more harm than good.
Good Luck - and God Bless as you journey through this insidious disease.
It sounds like you are saying that the organization representatives divide the people who attend and that you would not be allowed in the room where Flip would be. I know there is enough stress in your daily life. I also know you are highly intelligent and intuitive so if there is something that needs to investigated you know how to do it. Hugs to you and Flip.
Sorry that you and Flip are facing such unnecessary stress. I don't know what to suggest but I do hope it works out for you whatever you decide to do. God bless.
I think that is just appalling. Unfortunately,and I've seen it before, control freaks gravitate to such organizations. I think, for Flip's sake, you should bid adieu and definitely let it be known why. People like this should be put in their place. Of course, I am not there and do not mean to be presumptuous.
And why have you not knocked her teeth out yet? That is despicable! He's probably smarter than her. What kind of screening do they give people in positions where kindness and empathy and compassion should be their their most important qualities, but, in this case, obviously aren't? Don't let him go there again until they get someone decent. Surely you can /have mention[ed] this to the person who oversees both your groups? Arghhh!
Lisa,
I believe him, too. The lady is an ass. But your point is valid -- it's HIS perception that counts here, regardless.
There are no other such groups that I know of. I suggested to some of the other caregivers that we start our own group but they seemed nervous about daring to do such a thing w/o official sanctions. Maybe I'll just join a book club. :)
Agent,
Funny you should mention that. We've been friends with another couple in the group for awhile, and they tended to downplay what I considered her abuse of Flip. But then last week, she was apparently nasty to one of them, too. So yes, it's a pattern. She is drunk with power and is hurting people who can't fight back.
Nick,
I'm happy to learn that your sister has lots of support with her own awful disease. I've always been pretty independent, but this disease is testing me sorely in every way. It also drains my energy, which is why I haven't done too much research into other options.
Maria,
It does suck. Thank you for saying that. I'm not surprised about the abuse of the children you help -- I have not worked with autistic people but with retarded children and adults, and the abuse they endured was horrific. I lost a job because I refused to follow "protocol," which I considered abusive.
Good Cook,
I wrote a letter to both facilitators explaining why we have not been attending the group. Neither has responded. If they don't within a week, I will take my complaint to their boss. I don't know who that is, but it's a matter of doing a little research.
If she can't muster a little patience when that's her job, she shouldn't be in that position. She is definitely doing more harm than good.
Babe,
Thanks for the vote of confidence and the hugs. Much needed!
Calvin,
It's mystifying that an agency set up to help stressed people is adding to the stress. It's easy to lose faith in people when such things happen.
Ian,
I agree. She is a control freak. She confided to me once, before all this happened, that she wanted to have a child whom she could make into a big star like Shirley Temple so the kid could support her. I laughed, thinking she was kidding, but she wasn't. There is nothing remotely "right" about that.
Molly,
Flip is smarter than most people but he can't speak very well anymore. I couldn't handle that kind of disability and think he deserves to be sainted for his mostly unfailing good humor. It is completely unacceptable for anyone to treat him badly. We won't be going back, but I do feel some responsibility to protect others who can't defend themselves. It's perfectly horrifying that this should happen in what purports to be a support group.
Dearest Hearts,
She needs to go. They need someone who can help, not hinder, and if she is not supportive, then she has no business leading a support group.
Square peg, round hole.
Turn her in, and have your friends do the same.
Much love to you, you two are in my thoughts and prayers.
XOXO
Scarlett & Viaggiatore
It's like when someone who doesn't like children is a teacher.
Sad. I'm sorry the place you turned to for help didn't work. You really should report her.
Okay, so they're nervous about starting an official group without official sanctions. It doesn't have to be an official anything. How about having some friends over for coffee one afternoon, hmm? You don't need to be openly militant if that scares them... maybe it's just a little get-together? :)
Well, damn it. Damn it.
To the whole thing, from the disease to Flip feeling at all demeaned to this woman's callousness.
Do follow up with the boss, if need be. I know you probably have to dig deep to find the energy to chase this thing down, but you'll be helping countless others who come after.
This makes me so upset and I hope that you complain to those in charge. Flip and you are already going through enough. To have support essentially made a non-option because of this person strikes me as immoral. I'm so sorry Flip's been mistreated in such a noxious and cruel manner.
Scarlett,
I can't "have" anyone else report her or do anything that makes them uncomfortable. Most people avoid conflict of any kind, even when it would serve a good purpose. But I will find out who supervises this woman and report her unkindness to members of the community they purport to serve.
Meno,
It's unfortunate because I don't ask for help easily, and now I probably won't do so again.
We've all had teachers who hated kids - at least I did. They found me especially troublesome because I asked questions which they usually chose not to answer.
Lisa,
I suggested just that - nothing official, just people meeting to discuss things. I think the other caregivers (I really hate that word) believe they will benefit more from something which is under the auspices of an organization, but once their loved one is picked on, they will probably change their minds.
Jocelyn,
You guessed right. I'm burning out fast. I much prefer smelling the roses to riding into battle, but I can and will do it when I have to.
Liz,
I think it's immoral, too. Obscene, even. It enrages me when people take advantage of those they perceive as weak and helpless. I will do my best to put a stop to it and at least I'll know I tried.
Does this woman have a supervisor? It could be that she is not properly trained, which is often the case. In which case, she should not be in that job. If she has been demeaning to other people in the group as well, she needs to be called up for it. The whole point of her being there is to help those folks, not to put them down. Is there some sort of a camera that can be used to film her, as there sometimes is with care aids in nursing homes? It's amazing the things people can find out.
Of course she is confident of being able to get away with her behavior, because I'm sure she is thinking "who is going to listen to an Alzheimer's patient? It's my word against theirs."
Please follow this up and keep us posted.
Jo,
I don't think training is the issue - she has been in this position for several years, at least. I don't know who her supervisor is but intend to find out as neither of the group facilitators has responded to my letter of a few days ago explaining why we haven't been there recently. They clearly don't care, and that adds insult to injury.
Have you considered wiring Flip for sound? I'm dead serious. A voice-activated recorder in an open backpack would pick up the conversation in the room.
CHB,
Interesting idea. I have thought wistfully of teddy cams but not of wiring him. Of course he might delightedly blow his own cover as a veteran of many Law and Order episodes. If I decide to go back, I'll try it. (They've been warned.)
If Flip complains about it, I think that is very telling -- about the situation (her hunger for power and his real frustration and hurt).
I hope hope hope that you, if nothing more, make a phone call and let her superior know what kind of facilitator they have. I would think that your phone call would not be the only one.
David,
Sadly, my phone call probably would be the only one. Most people are afraid to make waves, and in this situation, we are dealing with people who may lack the ability to remember or report abuse -- a double whammy. I am often the lone voice bitching in the wilderness.
This really is a shame. Wouldn't it be great if he could carry a recorder in a backpack and get it on tape? There was a kid who kept saying a teacher was abusive and no one believed him until he decided to secretly record a class. The teacher was fired.
If you are going to a support group, it's because you need help. If you can't get the support you need because of her, sommething should be done. You SHOULD have all resources available. It's a shame this person is closing a potentially great avenue for the two of you.
Meredith,
I have since learned from the wife of another man in the diagnosed group that Heather told her he was not welcome anymore "because he looks at his watch a lot and doesn't contribute much to the discussion."
And this in an ALZHEIMER'S support group. Outrageous.
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