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Long Island Alzheimer's Foundation, Inc.
April 25, 2013

In the spring of 2009, when my wife, Clare, was diagnosed with Alzheimer’s disease (AD) at the age of 63, I sought out a support group for her so she could meet with others dealing with this horrible disease. I turned to the only AD organization I knew about here on Long Island ... the Alzheimer’s Association. Sadly, I learned that whereas the Alzheimer’s Association had more than 30 support groups for caregivers, they had none for people with Alzheimer’s. Eventually I did a Google search and discovered the existence of the Long Island Alzheimer’s Foundation (LIAF) and that LIAF did have support groups for those with early stage AD. I set up an appointment for Clare to be evaluated so she could be considered for that support group.

As soon as we entered their Port Washington facility for the first time, LIAF made a positive impression on me ... and that impression has only grown stronger during these past 4 years. That first impression was of a warm and caring place, and Alana Rosenstein, the social worker who evaluated Clare, reinforced those first impressions. She was caring, concerned, and extremely knowledgeable.

What I could not possibly have known at that first visit was that LIAF would soon become more important to me than to my wife. As far as I was concerned, my “mission” was accomplished when my wife was accepted into LIAF’s early to moderate stage support group. I had found a “place” for Clare to meet weekly with others experiencing a similar situation. So, when I brought Clare to LIAF the following week to attend her first support group meeting, I brought along the newspaper and a few magazines to read while she was with her group. Clare, however, had other plans for me. We had learned that at the same time her group was meeting, another caregiver support group ... one exclusively for spouses of people in early to moderate stage AD ... was meeting in another room under the leadership of another social worker, Tori Cohen. Clare wanted me to join that group. No matter how many times I told Clare that I didn’t “need” a support group, she insisted that I “just try it” this once as a favor to her. I gave in, reluctantly, never expecting to attend another meeting. But by the time my meeting ended, I realized just how much I did need to be part of this group. Why? Because I was with other people who “get it” ... others who know what it is like to live with a spouse with AD, 24/7. Over the weeks and months I learned so much in that group ... so many practical suggestions for dealing with Clare’s AD behaviors and issues, and so much information about helpful products for people with AD. Our group facilitator, Tori, had a knack for drawing out those whose pain was most difficult to talk about that week, yet she always respected each person’s decision whether to speak up that week or not.

That caregiver support group also taught me other valuable lessons. I learned that I now had support from others whom I could lean upon when having to make tough decisions, such as convincing Clare to stop driving. And from group members whose spouses were further along on their AD journey, I learned a lot about how to deal with behaviors and situations that I knew I might also have to face in the future. In time, when I did find myself facing some of those very same issues, I was much more prepared than I would otherwise have been because of those group discussions. All members of the support group knew they could speak about anything they needed to talk about each week, and we all knew we would receive helpful feedback. Many group members bonded so closely that we would often call or email each other between weekly meetings to discuss something, or just to support each other when one of us was going through a particularly painful time.

After more than 3 years of our weekly participation, I had to place Clare in several day care programs so I could have some respite time. One of those programs is on the day our support groups had met, so my “formal” participation in LIAF programs ended. However, Clare now attends LIAF’s “Al’z Club” every Monday where she is able to socialize and participate in fun activities with others at her level, including several people who had been in her support group. Each Monday when Clare is at Al’z Club, I now meet for lunch with many of my former support group members. The primary purpose of getting together is socialization, but in some ways we continue as an informal support group as well.

Alana and Tori continue to remain only a phone call or email away, always there for both of us. When it was time for me to consider those day care programs, the first people I turned to were Alana and Tori. In fact, Alana even took valuable time away from her family one weekend to set Clare up for her first Al’z Club meeting. Now that I am looking into a possible Assisted Living Facility placement, I again contacted Alana and Tori and yet again they stepped up to provide helpful information and advice. Alana, Tori, and all of LIAF staff just always continue to “be there” for Clare and me to provide whatever support and assistance they can ... whenever I need it. They have truly made me feel that I am part of the “LIAF family.”

I am looking forward to eventually volunteering for LIAF at their Port Washington facility when time permits because without LIAF I could never have gotten through these past four years. My wish would be for all who are dealing with Alzheimer’s on Long Island to become involved with LIAF through their support groups and programs.

Alzheimer’s is a horrible disease that affects the entire family, and although the AD journey is somewhat different for everyone, that journey is difficult for everyone involved. However, LIAF personnel and programs can definitely make that journey easier to navigate than it would otherwise be without LIAF’s assistance and support.


More feedback

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

MY ROLE:
Client Served