The good, the bad and the ugly about EARLY STAGE support groups

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I  belong to several support groups for people with early stage Alzheimer’s, FTD and other types of dementia. Until yesterday there were 3. Now there are 2.

Dementia Alliance International https://www.dementiaallianceinternational.org/ is the brain child of Kate Swaffer and a number of other distinguished vocal dementia advocates from all over the globe. People meet online over Zoom chat in large and small groups. Informative seminars and webinars consist of topics as diverse as the Bredesen protocol and the MIND diet and dementia advocacy.  I have found a good deal of friendship, compassion and humor, as well as tons of up to the minute information pertaining to our lives and well being. It’s peopled by many talented minds, people who were at the height of their careers, and were taken out of the game by FTD, Alzheimers, Vascular dementia, Lewy body dementia and the subgroups within these. I’ve been attending the 2 online Zoom chats on Thursdays, and find it to be a lifeline of support and good will.

I first joined Alzconnected – www.Alzconnected.org before my diagnosis. My daughter the avid researcher and producer, introduced me to the site, and I trolled the posts for months, reading, and then came out and introduced myself, and told the folks what had happened to me. I went through the horrible ordeal of the diagnosis with a good deal of support from others, intelligent suggestions and compassion from those who responded to my posts. Sponsored by the Alzheimer’s Association, it’s an online forum that depends on posting topics, with others responding within the thread. The Younger Onset forum is the most active for those with diagnoses and those newly diagnosed. This is my go to forum and is where I read posts and comment, but I also read the caregiver and spouse forum, which is big eye opener. The struggles expressed by caregivers are very real, and the reality of the later stages that they are witnessing in their loved ones is grim and often difficult for me to read about. Reading the caregivers forum, one can’t get away from the reality that the disease ends with death, and that it can be fast, and is preceded by a tumultuous decline in behavior, cognition, functionality and compromised immune system and failing health. Several members with diagnoses have posted for a long time. I’ve read the most eloquent posts by members, some of whom have become online friends, a few that I have Zoom chatted with, and had good telephone contact with. While the element of a live regular Zoom chat is a missing element here, and I have no idea what most of these people look like, the immediate availability of the forum, being a place where one can go and read and post at any time, is important. The site is a little awkward to navigate for people with memory issues, the topic sometimes morphs and gets changed in the thread, but it’s as good as it gets for an online forum.

I felt the most important support group was one I could attend in person.

How wrong I was.

My experience and track record in accessing and being a part of a real time-in person early stage Alzheimer’s support group has been dismal. First I patiently waited eight months to gain entry, and was interviewed twice by the program of Caring Kind. I was not allowed to join. Whether it was actually because I am not as progressed as the others in the groups there, as the program director suggested, or because she simply did not like me and my outspokenness, or a combination of the two, I will never know. I do know that I felt and feel penalized to not be able to attend groups at Caring Kind, or meet anyone from their groups. Hey, I was raised in New York and went to high school several blocks from this location. It’s simply unfair but I am powerless to change this.

So I was thrilled when I was accepted into a group, at the hospital where I was diagnosed. I attended twice. Then yesterday, when I was told I am not as progressed as the others in the group, where I finally was accepted to a group, and was not invited back, I got pretty damned upset.

Yes, I was shocked to be in a room with all over 80 and 90+ year old Alzheimer’s patients, many with walkers and most having been accompanied there by home health aides. I was perturbed by some of these old folks being like The 36 Hour Day text book Alzheimer’s patients, saying things like, I wanna go home. and several appearing rather mute and extremely withdrawn. I felt silly tapping the balloon and beach ball to each other around the seminar table at the end of the session. I was annoyed when the social worker commented that the date was not important to know for those who no longer work (I know it’s important for people with dementia to orient themselves and knowing the date is part of that).

So after the first group, I wrote an email to the social worker, about my impressions. I asked her why it is that there are no support groups for people closer to my age and level of cognition and if she was to create one, could I be a part of it. I told her I wanted to stay in the group, but was writing to her to clarify what my level of communication and cognition is, and how that didn’t seem to match anyone there (although I did meet one woman in her early 80’s who lives independently and takes care of herself, shops and cooks and even does her own taxes).  because there is no other live support group for me to attend that contains people my age with my concerns. For me the action of going, walking, traveling and simply showing up and belonging, and socializing with those who can, was important for me. In hindsight, sending an email to her was a big mistake. After she finally read it, and responded a week later by calling me and telling me that I am no longer in the group, I tried to understand what had happened.  I do understand now that this is about stigma and keeping control of a group of Alzheimer’s patients. Don’t mix varying stages. That’s a no no in a group. But we’re all different, even those close in age and already diagnosed. We’re human and are as different and unique as snowflakes.

I outlined my concern in an email, and she booted me out of the group for being too smart  (which is pretty questionable seeing how things keep turning out for me), and for being able too articulate. My reaction to her telephone call was terrible. I defaulted to begging her on the phone to let me stay. It was humiliating. When will I learn that when I get upset I must breathe and listen, and not speak? The disinhibition that spews out if me when I am raw and hurt or misunderstood, loosens my hinges.

Now I am coming to understand the immovable mountain that is comprised of neurologists, psychiatrists, social workers employed in the Alzheimer’s and dementia service industry. A no is a no, and Alzheimer’s patients need to be pretty easy to deal with to be in a real time live group. There can’t be any challenges. I am the woman who pulled out her iPhone and googled a song to play for a patient who wanted to remember a lyric. The sort of thing, acting kind of normal and engaged, is not welcome in a group where 90% of the members don’t  and maybe can’t use a phone.

My cognitive remediation counselor, who I adore, is sticking by me and instead of the group, we are going to have lunch in the city tomorrow. Since I have not done something like this with anyone but my husband in over a year, it will interesting to see how I handle something that I would normally have done with a friend several times a month.

I was really devastated to not be able to have this group as my regular destination, but she is helping me to roll with it, build resilience, she calls it.  I am mad as hell that I do not have a real physical place to go to and be in a group and have this be part of my weekly routine, as I build a life for myself as a woman with early onset, recently resigned from my career and job. It was disconcerting to be the only non geriatric person in the room, and younger than the social worker leading the group. But worse is being told I can’t attend and do not belong.

The following is from a post on Alzconnected. org on the importance of best practices for people with dementia.

I’ll take the best and leave the rest.  What can I do? Am I sickened by not only having a progressive terminal brain disease, and not invited to participate in a support group explicitly for the disease? I am mad and know I am right. But as an old acquaintance once said to me, Do you want to be right or do you want to be happy?   I have to choose my battles more wisely, and learn to roll with it.

Mediterranean Diet  (my friend Paula, the famous food writer who has a spectrum of this disease, and who I meet with on the DAI zoom chat, says the Mediterranean diet is not the best one for Alzheimer’s, and she and others are incorporating much more fat in their diet, as per Bredesen protocol and David Permutter Grain Brain diet http://www.drperlmutter.com/grain-brain-scientific-validation/)

http://www.sciencedaily.com/releases/2007/09/070910162411.htm

Exercise

http://www.physorg.com/news205430929.html

Staying Mentally Active

http://www.alz.org/we_can_help_stay_mentally_active.asp

Socializing

http://www.aarp.org/health/brain-health/info-11-2008/friends-are-good-for-your-brain.html

Blog photo - sunflowers

3 thoughts on “The good, the bad and the ugly about EARLY STAGE support groups

  1. Oh Minna-i am so sad to hear that you are being excluded from speaking at Dementia functions because of your Alzhiermers-that is so cruel and Alzhiermers patients definetly should be allowed to speak at functions so they can share there experience and how it intervenes in there lifes to make us realise and reflect. Hopefully, you become friends with some lovely, kind, and caring people. Hopefully i can be your friend one day-i would LOVE to be your friend soooo much-your an amazing lady-take care

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  2. Oh, this makes me mad too! Early onset means you are early in the stages and can still function but have trouble and want to begin meeting others who are in the early stages. What did they not understand about that? Patting balloons around is not early stage. I’m so sorry. I’m glad you stated your feelings and do not think you should keep your mouth shut. I’m tired of people telling others to be silent just because they don’t fit into their mold of what they wanted, not everyone fits the pattern, and that’s just the point. Geez!!! So this is what got me thrown out too as a facilitator of a support group. We would get along so well, Minna. Maybe my next step is to start an early-stage support group in my area, do you think? You, smart lady, keep voicing your opinion, and I will mine. Til death.

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  3. If only it would make a difference! The people who need to learn are not responsive to change. The system is designed for what the facilitators think will keep us amused and busy for the hour or so we are invited to participate. I didn’t fit in. How many facilitators meet a woman who uses her cell phone to access information, music and images, to help other people with Alzheimer’s remember a song? Because of my age and retained abilities, I fell through the cracks.

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