I was familiar with your organization before you broke off from The Alzheimer's Association. In June 2016, when I reached out to get information on support groups, things had changed. Previously, all the support groups were listed online. They were in a neat calendar format that listed the days, support group leader and who they were for ex. children, spouses, etc.
Now, you have to call the regular hotline number. It gets pretty busy, so you have to leave a message. Then, wait for someone to call you back to grill you with a million questions to see if you "qualify" for a particular support group. I was asked, "What do you plan to get out of it? " I said "Um I dunno, support" "just a place to vent, pick up some caregiver tips and share things with other members that have helped me" "Normal things you do in a support group" the operator then responded "Our support groups are probably not for you, we don't share tips. Maybe you should sign up for our caregiver education classes." My mouth dropped to the floor. I had to spend the next few minutes convincing her that I really was there to mope and cry with everyone else in order for her to proceed. But it gets worse.
They are only allowed to give you information about one support group at a time. Supposedly, you have nearly 100 of them according to your website. Then you have to reach out to the support group leader and wait for them to call back, because they never answer either. The first one never bothered to call me back. So about 2 weeks later I had to call Caring Kind again to get ONE number for a different support group after being grilled again for 15 minutes. The second support group leader called me back after a week or so and was very nice. She ran 2 different groups. I was too old for one and too young for the other. That really sucked. I told her that now I have to circle back and call that hotline again. She agreed that was very cumbersome. She did offer to take me into one of the groups if the hotline couldn't find me one. I just had to interview with her. I thought it was odd, but I told I would reach back if I needed to.
About a month and a half has now passed and I was still trying to find a support group. I call the hotline yet again. Which by the way, isn't really a 24hr helpline. It's more of an answering service on the evenings and weekend. I called on a Saturday and was told that someone would have to call me back on Monday. I explained my frustration at this point to no avail. "Do you not have access to the list of support groups? Are you not a 24hr helpline? Is it a secret list that only a few people have access to?" When someone finally called me back, I was told of another support group that was actually run by the Director of Support Groups at Caring Kind. They said that if anyone could find me a group, it could be her. So I reached out to her. I explained my frustrations again. She apologized for my experience. She said they didn't have a group geared towards mid-thirties and forties children. By this point, I didn't care. I just wanted to get into a group. She offered a group that met twice a month and told me a little bit about the group. I said "Great, sign me up! I look forward to meeting everybody." I was told that I have to "interview" before I can come to the next support group meeting. Of course, I pushed as to why. She could have easily done it over the phone. She said that I HAD to come in person to the Lexington office and sit down with her. I was so annoyed at this point that I made an appointment and hung up. When the appointment came around, I was so angry that I had to take time out of my day to "interview" for a support group. I decided not to go and write this letter instead.
Of all people that should understand that a caregiver's time is valuable is the CaringKind of NYC. Why do you need to meet with prospective members in person prior to attending a meeting? Do you need to see how they look like? The color of their skin? How they dress? Would you turn me down if I didn't have the right look or say the right thing?
I'm the one looking for support. I should be screening you and seeing if your group fits my needs. Why can't I just walk in to a support group, meet everyone and decide if it's right for me? Support groups are supposed to be a welcoming and non-intimidating environment for people who a struggling with a particular issue. Your organization has not shown any of these qualities so far. I've been in the pharmaceutical industry for 13 years. I've been to support groups, I've helped organize them, and accompanied other people for different disease states and none of them required a pre-screen. You sit down, listen and speak if you're ready.
**I got a canned response back to my email above, that they would look into this and reach out. 3 weeks later I heard nothing. People need to know what their funds are supporting. It's obviously sub par services.** read more