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Joined: 3/15/2016
Posts: 4
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Anyone know of others in Phoenix area in early stages who are interested in being part of weekly support group where we could meet up face to face and discuss navigating this diagnosis logistically and emotionally?
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Joined: 12/5/2011
Posts: 795
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Hello and Welcome,
You may try calling the 24/7 toll free help line 800-272-3900 for assistance with this.
Please, tell us more.
Peace and Hope,
Lisa
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Joined: 11/29/2011
Posts: 7027
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The best would be to let local diagnostic center/s/ local doctors know what you are attempting. Then they can give patients, especially the diagnosed this information.
For some reason, this is easier said than done.
Try working with your local Aliz. Assoc.
You are talking about a large enough drawing area, so we know there are folks who meet your criteria.
Part of the reason I've failed at such ventures is that too many folks are not diagnosed at an early enough stage to be able to benefit.
And those diagnosed often are ashamed and prefer to hide in the sand.
We need to get our medical staff, who are treating alzheimer's patients who can still hold a conversation, to find places for them to socialize. And we need each local Aliz. Chapter to make this a priority.
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Joined: 4/25/2015
Posts: 406
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hello,
I live in Phoenix ..I am a caregiver and remembered that I had seen a support group posted for early onset individuals listed at the local alz office.
Their phone # is 602 528 0545.
I just looked it up and they have several locations around the valley for early stage support groups. I hope this helps.
Sandy
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Joined: 11/29/2011
Posts: 7027
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That's great information, Sandy.
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Joined: 12/2/2015
Posts: 1018
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Contrary to popular belief, there really is very little in the way of support for us with Alz in less populated areas. I guess that is also true about most other things, but there seems no shortage in caregiver support groups. I sort of understand, because there are far more of caregives who can go than there are Alz people.
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Joined: 11/29/2011
Posts: 7027
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Bill, perhaps you can try to organize one in your area. Two of the folks on these boards who did so went to their church and secured a room for the meeting. Next comes publicity, local and church bulletins. Another place to look for meeting space would be your local Agency on the Aging. It could be that they have folks hanging out there who would profit from such a group.
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Joined: 12/2/2015
Posts: 1018
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Mimi, I deleted my first response, because I don't want misunderstanding. I thought one of the major purposes of the AA was to help those with Alz. Telling us to help ourselves is fine, and I spend a lot of time doing just that, and it takes about all I have to give right now. There seems to be little shortage for many things, but not a lot for those who actually have it. Maybe I'm wrong, but I just don't have it anymore to go out and organize and set up and run meetings of any sort. Please know I appreciate your volunteer efforts on our behalf. You are doing god's work. Good luck to us all. Bill.
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Joined: 9/12/2013
Posts: 3608
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Bill - it never ends that people expect we can do for ourselves.
We would be doing it if we could.
I would substitute "formal support group" with a class on painting, basket weaving, pottery, music group, dog walkers, bird watchers, walkers,...casino? 
We might go to an ALZ group tomorrow but it is 60 miles away and the main reason I go is to get a very good lunch in that town.
Our weather went from sunny mild and beautiful back to slush and cold.
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Joined: 12/15/2011
Posts: 18704
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BillBRNC wrote: I thought one of the major purposes of the AA was to help those with Alz.
This is a common misconception. The founding of AA was to help caregivers. There is a biography of the founder of AA on the I Have AD board.
In Memory of Our Founder and Friend Jerome H. Stone
https://www.alzconnected.org/discussion.aspx?g=posts&t=2147512185
There is a posting by two PWDs on how they started their own Memory Cafes, also on the I Have AD board. Look for the posts of Paul Hornback and lpn12659 towards the bottom.
husband w/early onset looking for support group
https://www.alzconnected.org/discussion.aspx?g=posts&page=-1&t=2147524317#ekbottomfooter
For about a year, I was graciously allowed to attend a Family Caregiver Support group, not affiliated with the AA, but with a home care agency. I learned a lot from the caregivers. Once a month, there was a speaker from AA to give a talk and to answer questions. In fact, she was the one who encouraged me to be insistent that my neurologist take me seriously.
I also attended a Women's Peer Support Group for women with all kinds of disabilites, and I attend monthly meetings of the Multiple Sclerosis Support Group. I have to take my support where I find it.
Iris L.
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Joined: 7/24/2015
Posts: 3020
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Yes, PWD be doing many amazing things...an there be many wonderful active online support groups peop disease. We a great bunch peop.
But that does no negate peop's anger outrage at the Alz Asso be take name our disease an snub their noses us, leave us dust...it be (in truth) shameful them...an there be no pardon them this.
If it had been solely intended caregivers us...then it should have been called CAREGIVERS ASSO.
Please do no discount peop's hurt disillusionment this - that REAL thing they be have process. Please do no minimize peops' with disease anger outrage this - it REAL as well.
They should be there us...but they real be dropped ball that in most shameful way.
Howeve, for what worth...peop with cancer be prett upset their Assos as well. So we no be alone that.
I be sorry an newly diagnosed that eve think come here...or by g-d make mistake call their 800 number thinking they going know squat. You in for world disillusionmemt...shock, outrage...an may eve sink depression an hopelessness thinking if they no have help you - then they must be no help in exist. But this is no true...many great peop disease make their own orgs...be doing great things help us peop disease. Most peop dementia community do no bother the Alz Asso...find them useless save for raising research money.
That is what they be do...raise money. An they do that prett well.
The rest be up us...an that hurt like worst cruel joke in world. The more you progress, the crueler the joke be.
Hang in there. There more bout dementia than just that perspective. You CAN live a great life after diagnosis. You CAN take control you life...plan things out...try secure care you want as you progress. There is hope of many good years, being productive, contributing. Don't let this place get you down...an don't let this be you onl source support...that recipe disaster.
I pers wish Alz Asso would collaborate with orgs that ARE help us...an refer us there. I mean, by g-d, if you no going offer us support - at least direct us towards it...
Much love. <3
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Joined: 12/4/2011
Posts: 21306
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I am still interesting in including the other organizations your refer too frequently.
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Joined: 12/15/2011
Posts: 18704
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It is better to light a candle than to curse the darkness.
The AA, like every other organization, is not perfect. But they do provide needed resources for patients. Of course, I wish there were more. But they can't do it alone.
There is room for other organizaions. But why disparage this organization? Is there a suggestion for improvement?
Iris L.
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Joined: 11/30/2011
Posts: 4499
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Folks,
I think it is very important that
one has the power to reshape things if enough people try to bring change. All
because some one does good it does not mean it should not be better. Settling
for less is failure.
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Joined: 3/15/2016
Posts: 4
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I have been able to get an appointment to meet with the Executive Director of my local Alzheimer's Association next week. Have any of you tried the same? I honestly think they do not try to exclude us, but simply don't know what to do with us. Is there anything you would like me to share with her? I am happy to present the sentiments of the online community.
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Joined: 12/15/2011
Posts: 18704
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There is a difference between seeking improvement versus disparaging the people who are already doing the best they can do.
Iris L.
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Joined: 5/20/2014
Posts: 4408
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bhadd55 wrote:I have been able to get an appointment to meet with the Executive Director of my local Alzheimer's Association next week. Have any of you tried the same? I honestly think they do not try to exclude us, but simply don't know what to do with us. Is there anything you would like me to share with her? I am happy to present the sentiments of the online community.
The needs are so many I can only come up with a few: Fundraising not just for the cure but for exclusive dementia specific services for PWD such as, in home services, more dementia communities, group homes, funding and training for service dogs, scholarships for PWD who cannot afford to be placed in quality care settings, advocation for the legal and civil rights of all PWD and for young onset PWD to be able to participate in gainful employment. The AA actually employing PWD in the early stages as experts on living with dementia. Help to keep us at home and out of nursing homes.
Suggest that the AA consider many of the services being provided in other countries such as the in UK and try to duplicate some of those services here. That AA collaborate with other credible national and local associations for PWD. Suggest that the AA consider that cancer association's fight for a cure but they also take care of the actual cancer patients and provide monies for many, many types of supports. That the services available for other illnesses need to be duplicated specifically to the needs of every PWD who is alive and living with dementia, and that not doing so and ignoring the needs of those currently living with and dying from dementia could be construed by many as being inhumane.
Perhaps dementia is bigger than one country and we need to stretch ourselves further across those borders? There is a war on drugs and a war on cancer. Those wars involve the persons battling the diseases getting helped. We and those who love us do not have enough help. Is there anyone who can logically and rationally argue this point?
If "the AA really does not know what to with us?" They may just need to get some help in trying to figure that out. Some of that help could certainly come from PWD knowing what the struggles are, knowing what needs are unmet. It's quite simple, do not ignore the unmet needs of PWD in the here and now and put all the focus on the future and a cure.
That we want a cure as much as anyone else even if we do not live long enough to see the cure. But the question remains, what about us, what about me? Don't we matter? Aren't our lives and the quality of those lives just as important as the next generation? Won't making our lives better help to make the lives of our caregivers better?
And last but not least, there is too much done and said about us without us!
There are others who have gone to the top of the AA chain of command with the aforementioned unmet needs of PWD clearly expressed. I greatly appreciate and thank you for doing so.
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Joined: 3/15/2016
Posts: 4
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Thank you Iris for your thoughtful and detailed response. Will carry the message. Not sure if you were the one to direct me to Dementia Alliance International-it's amazing to see how culturally ahead of the curve other countries are. The concept of dementia friendly communities and not adhering to the "about us without us" is much welcomed.
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