I so want to be a part of an in person Alzheimers early stage support group. I am having the 2nd interview with the program director this afternoon. Wish me luck.

You've got it. 

And I'm course I'm upset that someone has to wait for a support group!!!!!!

I understand the reason for one interview, but why two interviews?  

You will be a fine participant, Canada.

Iris L.

I WAS REJECTED FROM CARING KIND EARLY ONSET SUPPORT GROUPS IN NEW YORK CITY!!!

THE REASON GIVEN IS THAT I AM TOO FUNCTIONAL, IN THAT I CAN USE A MOBILE PHONE AND A COMPUTER.

LAUREN VOLKMER IS THE PERSON RESPONSIBLE FOR THIS DECISION.

SHE SAID MY PRESENCE MIGHT UPSET OTHERS IN THE GROUP WHO CAN'T READ OR WRITE, OR EVEN USE A PHONE.

I AM NOT ONLY UPSET, I AM ANGRY. SHE LED ME ON FOR 9 MONTHS THAT I COULD BE INCLUDED. I'M REALLY DEVASTATED. I  ENDED UP BEGGING HER. IT WAS A HUMILIATING EXPERIENCE.

THERE ARE NO SUPPORT GROUPS FOR EARLY ONSET IN THIS AREA. NOTHING EXISTS IN NEW YORK CITY OUTSIDE OF CARING KIND. I CALLED THE ALZHEIMER'S ASSN. AND WAS TOLD THE CLOSEST SUPPORT GROUPS ARE 2 HOURS AWAY. I DO NOT DRIVE AND CAN'T TAKE PUBLIC TRANSPORTATION ALONE (ONE OF THE THINGS I HAVE LOST THE ABILITY TO DO ALONE).

I AM ISOLATED AND WAS SO HOPING I COULD MAKE FRIENDS THIS WAY WHO I COULD SPEND TIME WITH IN A RESTAURANT AFTER THE GROUPS.

LAUREN VOLKMER IS THE PROGRAM DIRECTOR OF CARING KIND IN NEW YORK CITY. SHE SHOULD BE FIRED FOR NOT ALLOWING A WOMAN WHO HAS BEEN DIAGNOSED WITH EARLY ALZHEIMER'S INTO AN EARLY ONSET SUPPORT GROUP. THE ORGANIZATION WHICH BROKE AWAY FROM THE ALZHEIMER'S ASSN IS THE ONLY NEW YORK CITY ORGANIZATION TO OFFER SUPPORT GROUPS.

BY THE WAY, I READ SHE WAS A THEATER ARTIST/ ACTRESS BEFORE BECOMING THE DIRECTOR OF PROGRAMS AT CARING KIND.

I AM DISGUSTED BY WHAT HAPPENED.

I DO NOT KNOW HOW TO CREATE A SUPPORT GROUP IN MY OWN COMMUNITY.

I know you're upset Canada- I'm so sorry you had to go thru all that. But in the first place, I don't know why you even had to go thru an interview. I think that' s ridiculous. What does it matter if you are more functional than Mr. Jones- he was once functional too, at some point. We all have to come to terms with our various cognitive levels and our limitations. 

I am putting together a support group in my city and don't plan to interview or any of that nonsense- I'll take anyone that wants to join and that feels they need support. End of story.We'll be going to a Luby's (I don't know if you have one there) and meet in one of their back rooms for an hour/hour and a half a month- depending on the interest. I want to do field trips, guest speakers, game days, holiday celebrations, etc. I know of a gentleman who has advanced Alzheimers who I am inviting- for the mere sake of socialization, it's gotta be worth something to him! I plan to advertise it thru Facebook and other sites that I am a member of and hopefully, if it takes off then I'll let the Alzheimer's Association know about it. Damn shame, that THEY don't have a group for us in all major cities!

Canada- but maybe once you cool down, you can think about doing it yourself. I don't know how to lead one either- but I know I need the support, as well as others, and maybe between all of us, we can figure it out!

I hope you feel better soon!

Yikes!!!  FWIW, Canada, in the early years, I was rejected from two early stage support groups in my local chapter and in the next county.  Since I have a "not otherwise specified" diagnosis, the coordinator said that I would be progressing at a different rate than the other participants.  Darn it, we all progress at different rates!  Nevertheless, seven years later, I was allowed to attend a new early stage support group in a different part of town.  

The other day Michael gave you some tips on how to start your own group.  I still think it would be a good idea for you to begin in your own city, and not have to go into New York, unless you had certain transportation.

One of our members, Paul Hornback, posted about how he and his wife started their own Memory Cafe.  I am going to take the liberty of extracting his post from that long thread and reposting his post here.  I hope he doesn't mind.

Paul Hornback's post:

Iris told me you all might be interested in how we started our own Memory Café for folks in our area. First we did participate in a Memory Café sponsored by the Alz Association about 60 miles from our home. We attended this for about a year but the drive was getting to be too much for both of us.

We generally have a theme for the month. Some of the ones we've used include Favorite Christmas memories, Birthday memories, humor month, sing along, Mediterranean Diet, Best Practices, Favorite memorable newspaper headlines, favorite spring activities, unforgettable time pieces, salute to veterans, take me out to the ball park, etc. These monthly topics help spur conversation and memories among all participants. Again, there is no pressure to talk but most folks chime in even if it is only a few words or sentences.

Everyone enjoys being together and sharing a light snack or meal. We also packed boxes for the homeless and for veterans as an activity. We have also made cards to send to people who are having a difficult time as well. These activities use our minds and hands doing something needed.

Thank you all for chiming in. I am more than beginning to understand how the powers that be can and will determine our fate. From medicating us to keep us quiet, to disenfranchising us when we don't fit exactly into what one person thinks is a group dynamic.

I called the Alzheimer's Assn. and received calls from as far flung as Pokeepsie and Chicago. The reason, I found out, is that Caring Kind was a part of the Alzheimer's Assn. until last year. Apparently, they broke away for financial reasons. The woman is the program director, is not even listed as such on their website. She made a decision, based on her personal judgement. This would not have have happened if the Alzheimer's Assn was still overseeing them.

What is my recourse short of starting my own support group, something that is fairly impossible for me to do, because I don't know anyone in my own community who is in early onset?

I thought to find the contact information for the director of Caring Kind, and write to her, along with husband, as well as contact all of the board of directors, and let them know that an injustice has been done, and that I was rejected from the support groups (they also have a memory group and a chorus). I am now not eligible to participate in any of these. 

I want the decision that the program director made to be overturned. In fact, I want some oversight to take place there, and for someone other than this person to weigh in on decisions that impact so harshly on a person with Alzheimer's life.

Caring Kind is a very well funded modern facility, with facilitation by trained social workers of their support groups and other groups. I do not want to have to find a church or basement in my community and be the one to organize a support group. I should be as eligible as the others who are already in the groups at Caring Kind, to participate and benefit from the services of this non profit organization. it should not be a closed club, with group membership decided upon at the whim of one person who is not receiving oversight from the director of the organization, Lou-Ellen Barkin, and the board members.

What are your thoughts on this? Do you think it can be effective to make a stink about this, and call attention to what happened to me, with my husband's help? Do you think there is a chance that this can be appealed and her decision overturned?

You might want to work with Michael, since he knows many of the people involved.  There have been many changes in the different AA groups over the past few years, and I really have not kept up with the changes.    I am not familiar with separating into memory group, support group, and a chorus.  I understand your desire to be part of an established, facilitated group.  It is hard enough having a devastating illness, but to be kept from support is outrageous!  

Iris L.

Canada, With a name like you have I assumed you were from Canada.

New York City has chosen not to be part of this Alzheimer's Assoc. And now we have evidence of how well that is serving the folks who need support. 

NYC might be more difficult to set up a group.  Are you a member of a local church, fraternal organization?  How about the nearest Y? Does NYC have a local Aging Office?  What you need is to talk to someone at any of those locations and look for a free spot to hold a meeting. Next set up a meeting time and spread the word. That organizations local newsletter, posters there, posters at any other spot you can think of, including your local grocery.

I've asked a friend to come on and tell us how she did it. She's having computer problems.

I will try to connect with you, privately. I'm not too good at that, so if interested try to set it up from your end. We could call on the phone.

I hope they have a sustained donor base, because the amount they spend on administrative salaries is ENORMOUS and it's no wonder they broke from the AA.  They never would be given the funding to pay all those people.  Very top-heavy and title-laden.

That said, you could push to get in, but do you want to be in a group by force?  I don't know who she's trying to serve, because if she wants people who can't read or use a phone, that's a bit past early stage.

I called CaringKind this morning requesting information re the programs for MCI they say they have on their website.

No response yet via phone or email.

I will stay on this.

A letter to her, the board of director and  the Alzheimer's Association will make you heard and hopefully, in the future, this will not happen to anyone else. I second day2nite2's opinion- why would you want to be somewhere you're not welcomed. I think venturing out to NYC is a real challenge, but you could start one in Hoboken and surrounding areas-Union City, Weehawken, North Bergen, Jersey City. Granted, it would take some work, but I think it is possible.

Good luck, Canada.

I had occasion to call the Helpline in Chicago at a time when I was in distress and my local chapter was unhelpful.  I had a very productive conversation with a Care Consultant.  I had waited until Monday morning, but I was advised that someone is available or on call 24 hours a day.  Canada, you might think about calling the national office in Chicago.  I don't know what influence they could have with a chapter that broke away from them.  But the Care Consultant could be of help to you in dealing with this rejection.

Iris L.

I'm very thankful to be validated here on this issue.

 My husband composed an email to the executive director detailing the unfair treatment and requesting an appeal. Do I want to be a part of their support groups still? Yes, I do! It is a comfortable and professional setting and I am not trained to lead a memory group or a support group. I am now more curious than ever what exactly does happen in the early stage groups (1 support group, 1 memory group, and 1 choral group per week). Yes, I do want to be a part of it.

 That one individual is responsible to say no to me, for her own reasons is not clinical assessment. It's elitism. I have uncovered something that dayt2nite2 is addressing. The only organization for early onset is a top heavy organization with a very large staff, and you can be sure they pay a very large rent, occupying 2 floors on Lexington Avenue. Millions of dollars goes into this organization.

It appears to me there is a strong aspect to this organization that is a social climbing venue for the wealthy Park Avenue types who want their tax dollars sheltered and want to feel good about putting these sheltered dollars into an organization that is an Alzheimer's charity. Many of the events they host are for donors. Where does the money go?

The bottom of the feeding chain are the constituency they are supposed to be providing services for.

 When the program director was asked why there are not more then 3 groups a week for early stage, she said they do not have the staff for this. Have you seen their website and how many people they employ? What in the world do they do if not provide support for those afflicted and their caregivers? If I was turned away, there must be others like me, who do not have a voice and can't make themselves heard.

 When I think about all the families that are bankrupted by this disease; Alzheimer's patients having to give up their jobs and income, caregivers having to give up their jobs to take care of the person afflicted with Alzheimer's, and I see an organization like this, and the cavalier and insensitive way I was rejected, I have to question, where are all the dollars going, to whom and for what purpose?

Yes, I think as an educated and poised individual afflicted with this horrible disease, and in the early to moderate stage, I should be allowed to benefit from the support groups at Caring Kind and be able to meet the folks who are similarly afflicted.

I have a terminal brain disease, that has impacted my functionality in many physical as well as cognitive ways. Unfortunately the disease is progressing in me, and I am not equipped to start and run a support group, nor am I trained to do so. If I have to I will push as hard as I can and try and facilitate something. But I shouldn't have to. That is the point I making.

 
I appreciate that my husband is willing to advocate for me, and will keep you posted on the result. I thought the next course of action would be to write to the many individuals on the board of directors. Maybe the squeaky wheel will get oiled. I hope I remain strong enough and cognitively well enough to continue to advocate for myself with the help of my family. What has occurred is an injustice.

Good for you, Canada!  Go for it!  You're right, most early stage PWDs don't have the capacity to advocate for themselves.  They don't know what to do, or they don't have the stamina to keep pushing for themselves.  That's why this message board is so important, because it is available to those with no other place to go.  But you're right about being able to receive support from the professionals who say they are for us.  You said you were interested in advocacy.  This dilemma appeared!  

BTW, I still don't know the difference between an memory group and a support group.  And is a choral group a singing group?  That's a novel concept for me in regards to Alzheimer's Disease.  But it sounds good.

Iris L.

You are right Canada, you(we) should not have to create our own support groups  having in existence such mega organizations. I hear you on that point. I figure here since there isn't one to even be rejected from, I either wait for someone to do it or do it myself. I don't know what possible training could be involved, but we'll figure out that as we go. 

I am VERY happy, however, that your husband is on board with you and advocating on your behalf. That may take you in a whole unexpected wonderful direction! Peace and love to you.

So sorry to hear this happened Canada. It's a lot to take in finding out you have a disease and then being discriminated against because of what stage you are in with the disease. How dare PWD get dx in early stage...no one seems to be able to deal with us or know what to do with us! Utterly ridiculous as many here obviously agree!

I wonder if cancer support groups have different groups for different stages or specific groups for persons in remission? Unfortunately, there is no remission in this case and no particular reason to not mix persons in different stages to a degree that the group can function to support one another. 

I would not discount support groups that are not lead by professionals or that are bare bones operations run in church basements with simply PWD just supporting one another.

Alcoholics Anonymous was the springboard for support groups and many lives and families were saved in those dimly lit basements by one alcoholic helping another alcoholic. 

I'm hoping there is some greater plan at play here for advocacy and that there is a chair in one of those groups with your name on it. Kudos to you Canada for standing up for your rights!

I checked my locale and there are two early-stage support groups, one for young onset and one for late onset. Both require pre-screening and a contact number is provided: 1-800-272-3900. Hmmm. Now I'm curious. I think I'll call for pre-screening.

There is also a general community-based support group that does not require pre-screening, I wish Canada had the same.