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I am desperate today
Canada111
Posted: Wednesday, September 6, 2017 1:08 PM
Joined: 8/22/2016
Posts: 263


I am quite desperate here today. I was told by the German born social worker that she doesn't want me to come to the early stage support group at NYU Pearl Barlow on Fridays. I made a terrible mistake, and wrote her a long email on MyChart that the people in the group were too progressed for me and why was there not an early stage support group for people nearer to my age and level of cognition. I shot myself in the head because this was the one thing that was keeping me going. I had been working with a cognitive remediation counselor who was retraining me to be able to take public transportation to get there. This is another loss in a never-ending series of losses. I am completely isolated now. I have lost all my old friends and need social contact and a purpose, and the ability to get to this group on Fridays was actually extremely important.  

I have early Alzheimer's as many of you know, but it is diagnosed MCI due to early Alzheimer's. It's not MCI or I would be much more functional and cognition and ADL's would be intact. I could no longer do my job at all, can't food shop or prepare foods or cook, can't do finances (and now have no income) as a result of resigning from job, and have lost the ability to take care of myself, travel alone, and be independent. 

The established agencies don't know what to do with me. I can not be alone without a place to go and real live people to interact with. I have gone completely crazy with grief at this point. I am unable to hold in my feelings and was begging on the phone to please allow me to stay. 


jfkoc
Posted: Wednesday, September 6, 2017 1:29 PM
Joined: 12/4/2011
Posts: 21242


Desperation is a bad feeling...immobilizing. Holding you as tight as I can.
Canada111
Posted: Wednesday, September 6, 2017 1:36 PM
Joined: 8/22/2016
Posts: 263


No one wants me and my husband leaves me alone all day with labeled meals. I am completely alone every day he goes to work. I have trouble dressing and grooming and trouble walking and going anywhere. Without the group to go to on Friday I am completely alone all the time. I can't bear the losses any longer. 
This is no longer a life worth living. Maybe it's time to say goodbye. 

Michael Ellenbogen
Posted: Wednesday, September 6, 2017 1:41 PM
Joined: 11/30/2011
Posts: 4460


I originally offer to help you to get in this place but declined. The reason they did not want you was probably for the reason you did not like it. That will not change and that is what many of the support groups are like. It is kind of what is out there and no control on who signs up. So what do you want now? I am willing to pull strings for you but you need to not tick them off going forward if I do. 


Canada111
Posted: Wednesday, September 6, 2017 1:51 PM
Joined: 8/22/2016
Posts: 263


Please help Michael if you can.
Michael Ellenbogen
Posted: Wednesday, September 6, 2017 2:02 PM
Joined: 11/30/2011
Posts: 4460


Were you connected to this person by the Alzheimer’s Chapter in NY? 


Canada111
Posted: Wednesday, September 6, 2017 2:17 PM
Joined: 8/22/2016
Posts: 263


No, I sent you an email here in connections. It is through the New York University Pearl Barlow Center for Memory and Evaluation. I sent you all the contact information for the social worker and neurologist who says he knows you. 

http://nyulangone.org/locations/pearl-i-barlow-center-for-memory-evaluation-treatment 

The social worker is Ursula Auclair -

Early Stage Support Group The center offers facilitated support group meetings to people in the early stages of AD.  Studies suggest these groups may alleviate depression and social isolation, enhance coping skills, improve self esteem and provide education and mental stimulation in a safe environment. 

 Alzheimer's Association has no support groups in New York City. Caring Kind was affiliated with Alzheimer's Assn. until 2 years ago and they broke away. I was rejected from Caring kind support groups program director. 

http://www.caringkindnyc.org/?_ga=2.78284305.482990329.1504723318-107059700.1504723318 


alz+
Posted: Wednesday, September 6, 2017 2:48 PM
Joined: 9/12/2013
Posts: 3608


if a live support group would help, and this one offered something beneficial to you then I hope you get to go there again.

isolation is used as a punishment, no doubt feeling isolated is making everything worse.

there are not groups around me either - but I would like to go water exercise in swimming pool class, or a yoga class. Years back I went to an over 50 aerobics class and the music and laughing as really good.

It might be possible to seek your favorite companionship at a pottery class or ??? Pet sitting? we have to be imaginative because what we each need is 50% individual preferences/capabilities and the other 50% no one has figured out yet.

This condition we share is a full time job, volunteer wages. I love it when Michael steps in. 


Canada111
Posted: Wednesday, September 6, 2017 3:58 PM
Joined: 8/22/2016
Posts: 263


You Alz+ are so right when you say isolation is used as punishment. That is what is happening to me now, because I complained that there was no one my age in the group or on my level. It's not true. It is not perfect but is what I needed to remain functional and socially connected.
obrien4j
Posted: Wednesday, September 6, 2017 4:26 PM
Joined: 11/18/2016
Posts: 451


I really wish when I am wanting to reply, the screen with everyone's replies would not disappear. I then have to go back a screen, reread what someone wrote, in order to reply effectively. Doing that for every post you want to reply to, is challenging, and a lot of steps to remember! Could the last reply not be tacked on in some way, without creating a new screen?

Does anyone get me??


jfkoc
Posted: Wednesday, September 6, 2017 4:44 PM
Joined: 12/4/2011
Posts: 21242


I get you. What I do is write down whose post, what they said and my reply as I read. When I post I lead with the name of the person I am replying to example;

For Obrien...I get it.


jfkoc
Posted: Wednesday, September 6, 2017 4:47 PM
Joined: 12/4/2011
Posts: 21242


Canada...I have been thinking along the lines alz mentioned. An undemanding environment with and activity and some people and relatively easy to get to. Library, "Y", senior program, art class???? Something to look forward to and enjoy. I will look.
Canada111
Posted: Wednesday, September 6, 2017 6:17 PM
Joined: 8/22/2016
Posts: 263


Thank you Jfkoc, Alz+ and Michael, for your support and ideas. 
Isolation is a killer and I am so appreciative to be able to connect here and tell the story of what has happened to one younger onset woman age 63. 
The rejection from two early stage support groups, first at Caring Kind, then at NYU Pearl Barlow, is simply too much rejection for me to absorb.
An early stage Alzheimer's support group is what I needed, and I was wrong to have sent the social worker an email complaining that I am not as old and advanced as the members in the group. I should have just sucked it up. 
I do need to be among people who understand and have dementia. Otherwise I will vegetate at home sitting and ruminating. 

llee08032
Posted: Thursday, September 7, 2017 6:38 AM
Joined: 5/20/2014
Posts: 4408


Hold on Canada. Hopefully, Michael can work something out. 

You should not have been dismissed from this group from a therapeutic and group process standpoint. 

The leader or SW should  encourage you to keep attending and direct your attention to focusing on the commonalities you may have with the other members and helping you to make connections with the other members. 

She should be looking at what you will bring to the group and how you will enrich the group. How you can benefit others in the group and how you will benefit in return from supporting the other members. 

I get it too Obrien and am having a hard time responding to posts also.



BlueSkies
Posted: Thursday, September 7, 2017 12:22 PM
Joined: 2/24/2016
Posts: 1096


Hope that you can get this worked out Canada.   My heart goes out to you.   I am praying for you...

Obrien and llee, can't you scroll down when writing your new post to read what others had written?  I can.  I just scroll down to read and then scroll back up to respond.  Then scroll down again when I need to and scroll back up again to respond some more.  Can't everyone do that?


obrien4j
Posted: Thursday, September 7, 2017 12:50 PM
Joined: 11/18/2016
Posts: 451


Oh WOW- didn't see that one! I feel like a complete idiot! How could I have missed it? Has it always been there????
Mimi S.
Posted: Thursday, September 7, 2017 6:37 PM
Joined: 11/29/2011
Posts: 7027


Yep. Except sometimes a bug happens and the original post is cut off.

I'm trying to remember to use text edit when I know my post will be longer than my usual few sentences. I can use spell check, have the post I'm answering side by side to refer back to. When finished I simply cut and paste.  And if I have neglected to check it at least twice, all will know.


Canada111
Posted: Friday, September 8, 2017 2:51 AM
Joined: 8/22/2016
Posts: 263


So here's my Alzheimer's delusion- I had previously spoken about being a child of diseased Holocaust survivors to y'all. The social worker who runs the group is German around age 70. Her accent is evident and I picture her growing up in Germany, the child of Nazis. So I'm paranoid. True. Trying to get the social worker to consider letting me back in reminded me of the scene from Schindler's List when the young Jewish woman, previously an architectural student, tells the Nazi officer the structure they are building will collapse. He tells her how intelligent she is and then he shoots her in the head. 

The social worker is immovable. I am not being appreciated and understood. I can not gate crash their Alzheimer's party. 

Screw it. The system does not work. If I speak and complain they will try and medicate me. 

It's a dangerous world for people with dementia. That's why we need each other and groups like Dementia Alliance International. We are so damn early in history of changing perceptions about how people with this disease should and must be treated. Respect is the last thing they are interested in offering. Remember they talk to the caregiver when you are sitting right there?

They are still using restraints in nursing homes, for heavens sakes. The system does not like people with dementia to have strong opinions and heaven forbid if they can write and express themselves. ESPECIALLY if they are a woman. Even Teepa Snow has made fun of a woman with Alzheimer's saying she was a professor and highly educated, so don't talk down to her. 

I'm telling you, this is why some people choose not to share their diagnosis. Alzheimer's in this cruel world = crazy. Only through united forces and time and groups like DAI will there be any change, if it comes at all. It's our generation of younger onset that are the forefront of this battle. It's not going to be won by ranting in their faces, or showing them how smart we still are. 

Illee wrote - You should not have been dismissed from this group from a therapeutic and group process standpoint. 

The leader or SW should  encourage you to keep attending and direct your attention to focusing on the commonalities you may have with the other members and helping you to make connections with the other members. 

She should be looking at what you will bring to the group and how you will enrich the group. How you can benefit others in the group and how you will benefit in return from supporting the other members. 

In a perfect world this clarity and approach makes so much sense. In the real world it does not happen.

 She doesn't want the challenge. 

 

 


dayn2nite2
Posted: Friday, September 8, 2017 3:23 PM
Joined: 6/20/2016
Posts: 3462


I guess I'm not understanding why being in this group is important now--when you posted after attending the first time (the same post where you said you emailed the social worker), you sounded like the activities were far beneath you and the people were pretty far along.  The social worker probably got the same impression.  You even kind of made fun of the fact that they hit a balloon back and forth.  Am I misremembering your post?

Also, if a person with a German accent is triggering your paranoia, why would you want to attend a group led by someone German?


Canada111
Posted: Friday, September 8, 2017 11:10 PM
Joined: 8/22/2016
Posts: 263


day2nite2, I was told the same thing by Caring Kind, that I was not progressed enough to be in their support group. That it might be intimidating to other people that I can use an iPhone and a computer. Caring Kind did not admit me to any of their groups.  There is no Alzheimer's Association support group in New York. Caring Kind separated from the Alzheimer's Association a few years ago. They are the main game in this city for Alzheimer's support groups and I was not accepted there. I'm too functional, and my memory and skills are not declined enough. 

So, I was initially delighted that NYU Pearl Barlow Center for Memory and Evaluation and this social worker accepted me to the support group, because of what happened at Caring Kind. When I attended this group and saw that I am 25-35 years younger than anyone there, and that most of the people were not relatable (except for one woman in her 80's who lives independently and I don't think has Alzheimer's, who I have been having phone conversations with, and thought at least there is one cognitively sound person there who I can be friendly with). 

With that said, there are no other options outside of a day program, which means day care. I don't want to do arts and crafts, and paste buttons onto a paper plate and work with clay. I simply wanted a place to go and be an adult who can still have a conversation, talk about the news, or whatever,be with others who have dementia in a once a week support group. I thought just possibly there might be people closer to my age who I might have a cup of coffee with after the group. I should not have sent the social worker an email complaining that these people are more progressed than me. That was a big mistake. 

As for my reaction to her being German and this happening, that was over the top. The social worker may indeed have been raised by Nazis, given her age. I spent time in Germany as an American Fulbright. I have worked with lovely young Germans. I was angry at her when I wrote that, and was venting my anger. 

What I learned from this is the institutional and general stigma of dementia remains that people should be in their own world and unable to think and write.  


dayn2nite2
Posted: Saturday, September 9, 2017 12:26 AM
Joined: 6/20/2016
Posts: 3462


So you agree the group itself wouldn't fit your needs anyway.  Is there a requirement that whatever group you would join must be connected to a disease?  Could there be a book club, a painting club, a history club, you could join (even a group at your local library) that would serve your purpose?  I don't live in a large community but my library has a weekly group of people who are learning English and the group regularly advertises for people to come to help them practice their conversational English.  It's a social hour, really.  I think you need to branch out from the "dementia" group track and just find a group that interests you.  It has nothing to do with stigma--you're looking for a social outlet and any group should suffice.  Ideally there would be early stage groups for every place, but it's a funding and a demand issue and some places have little demand and/or little funding for more than a general dementia group.
llee08032
Posted: Saturday, September 9, 2017 8:53 AM
Joined: 5/20/2014
Posts: 4408


I respectfully disagree day-to-night that it is not stigma. Alz and other dementia's continue to be viewed as a grandparents only disease. Little attention, time, resources and money is focused on persons with young onset and how they are impacted in the middle of their lives with so much life in front of them. To top it off we live in a culture that does not value it's aging population and perhaps what little they get is not enough to share. 


MPSunshine
Posted: Saturday, September 9, 2017 10:20 AM
Joined: 5/21/2016
Posts: 2012


Hi, Canada, I took a couple of years leave to help my parents get settled in their new direction and during this time became educated and sensitized to dementia related issues. I returned to work and to my surprise found that many coworkers actually demonstrate memory problems. It's more prevalent than you may think. I would hazard a guess that if you did participate in a club or group or volunteering in your community that you would find you have a worthwhile focus to your day, something you have done that you can talk with your husband about, and much less isolation. My neighbor, who definitely has memory issues, participates in a card playing club (she walks there), swimming pool exercise class (she takes the city bus), and a charity club through her church (one of the other participants picks her up at her house and brings her there-- she prepares lunches for children who don't get regular meals on the weekend). I am sharing these ideas to try to encourage you to not think of yourself only as a person with dementia, but as a gifted person first, and yes, you happen to have dementia. Good luck to you in your search for activities meaningful to you!
grandmalynda
Posted: Sunday, September 10, 2017 2:03 PM
Joined: 12/3/2016
Posts: 374


Canada, I must agree with the suggestions you have received here regarding getting yourself into non-dementia related activities.  I try to go to bingo at the local community center twice a week.  It's been a great social outlet.  I've even made a couple of new friends that I have gone out with socially, something I haven't done for a very long time.  About six months ago I started volunteering at a local organization that provides a fun place for disadvantaged children to enjoy.  It is the highlight of my week!  I thoroughly enjoy the kids and the unconditional love that I receive from them is invaluable.  I am totally able to get out my own head for a while and concentrate on loving and being loved.  Please search your local resources for something that you would enjoy and that would allow you to escape from the dementia world at least for a little while.

Wishing you all the very best.

--Lynda


llee08032
Posted: Monday, September 11, 2017 6:58 AM
Joined: 5/20/2014
Posts: 4408


MP,

I find myself noticing all too often how others forget also. Sort of like I am checking myself along side of them to see if I am really just normal? UnfortunatelyI've concluded that I am not normal and the forgetfulness I see in others mostly I feel is due to inattention and distraction. The two are very different.


Canada111
Posted: Monday, September 11, 2017 11:16 AM
Joined: 8/22/2016
Posts: 263


I want to thank those who made good suggestions for activities where I can contribute. I have a very complicated situation where I live 3 blocks from the school where I was chair of the department. I see people I know as soon as I walk a few blocks from my house. Yesterday one of these people ignored me when I passed him. That was heartbreaking. I still want to be a part of this community, but how can I be if I can't tell people what my diagnosis is? The local library will be full of people I know. The head of the board of the library is someone I've known for years. How do I reconnect with people when the stigma of the disease is to stay away from people who are diagnosed with Alzheimer's? I have disappeared, and do not have the fortitude to get out there...yet. 
At the moment all I have been able to do is write my blog www.suddenlymad.com