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husband w/early onset looking for support group
kelifus
Posted: Tuesday, January 19, 2016 12:05 PM
Joined: 6/17/2015
Posts: 3


Hello,

this is my first message here, my husband is currently 61, diagnosed with EOA at age 58...I have been attending a class for caregivers in our area, but he is asking if there are support groups for those in his situation, but I am not finding any, and it is not possible for him to type or manage communication like this any longer...he is very capable of carrying on conversation about his life, and disease, but are there any suggestions for someone in this position, please? thank you


Mimi S.
Posted: Tuesday, January 19, 2016 12:39 PM
Joined: 11/29/2011
Posts: 7036


Welcome to our world. Do  all your local MA Alzheimer's number.  Ask about phone support groups. You might need to dial in for him because it is necessary, usually to dial two different numbers. Here in PA we have two groups he could participate in; one is for those, such as himself and the other is for anyone. So he could participate in two  monthly.

Also ask about any actual groups, including memory cafes, that he might attend.

Have you found the Spousal Board which is designed for members whose spouse has the disease. Go above to Discussion Board and click Spousal.


The_Sun_Still_Rises
Posted: Tuesday, January 19, 2016 4:53 PM
Joined: 7/24/2015
Posts: 3020


Hi and welcome...there IS an org running online video support groups for people with a diagnosis. Here is the link: http://www.dementiaallianceinternational.org/membership/

They also have special event speakers and such for both you and he. 

They are great groups of people in varying stages of the disease process...we all support each other, they are very respectful and a great place to meet many like yourself, form friendships and truly feel supported with the disease.  We also regularly share tips and tricks for tasks and whatnot. 


Michael Ellenbogen
Posted: Wednesday, January 20, 2016 11:19 AM
Joined: 11/30/2011
Posts: 2483


If we are going to share information on this forum we should not be bias on what we share. This is another support group and they also have one on one support.http://dementiamentors.com/


kwc
Posted: Friday, January 22, 2016 10:07 PM
Joined: 5/22/2014
Posts: 37


Very good  question.   I always look to find answers on simple things I catch myself doing  ( I have early onset I am 55 found out 2 yrs ago)  I always find EVERYTHING is for caregivers I understand they need help also. But what about us?  They small town we live in has a ALZ group like once a month but CAREGIVERS  I was there with wife an I felt so out of place

I am feeling kinda ANOYED about this


Mimi S.
Posted: Friday, January 22, 2016 10:48 PM
Joined: 11/29/2011
Posts: 7036


Hi KWC,

I feel the same as you do.

Except.

There are some very viable groups for us. Why do some succeed and others can't get off the ground?

Pittsburg had a group for years, but as those left, none were fund to take their place.

A town in central PA, near Lancaster, has a very viable group started by a very active PWD. 

A had ope going for a few years, but it got to be one and another gentleman. Not a group.

The problem, as I see it, that by the time most are diagnosed, they are well into the disease and really cannot profit by discussion groups and memory cafes.

Others, diagnosed or not, cannot admit they can have a memory problem.  Families still do not want to disclose. 

Larger population centers certainly should have the population to support various types of support groups and memory cafes. 

 Do bug your local Aliz. Assoc.  offer to host a group, then get a spot in your Aging office, library, church, wherever. 

I've always wanted places that do diagnosing to offer patients a resource list. On that list would be a question. Would you like to chat with someone with a similar diagnosis? Then an effort would be made to match the person with another PWD as alike as possible.

These boards are wonderful and do keep coming. I believe we also need persoanal contact with others.

To me, one of the benefits of going to the spring Aliz.forum in DC was the opportunity to meet with so many other folks with a dementia diagosis.
The_Sun_Still_Rises
Posted: Saturday, January 23, 2016 6:42 AM
Joined: 7/24/2015
Posts: 3020


It is an annoyance to many us, this.  We one disease after all...and they say social best thing we can do to keep brain...the easiest they could help us out is provide that...you'd think.

The ones that likely do no get off ground likely be because leader, sorry to say.  We used have great leader...but now new one, who some eager...but also so misguided.  Kind of like say, she read art good us...we go glue macroni paper...and false concern care us.  Very wrong, nails chalkboard me...hard cope with that, just to see other peop person. 

They can think need baby sit us...when what we need is space just talk, share, care each other.  They think constant activity...we just want be together.  They no ask us what we want. 

Our group old peop, like sing...all do choir, huge huge group (think 90peop)...is great if have money do these things, rides nights shows.  Is all nice, if I was 80.  I can no sing, no real my thing...way to introvert that.  So I sort of outside group...no find way to fit in...no one make room way me fit in. I think many our area left out same reas. 

I feel dispoint, hurt sad...and glad proud...that people with the disease have to figure out how do this selves, for each other.  Glad we can proud we do this each other...but let down that others no think care enough us help us do.

Those groups can be great.  I plan to start some self soon here.  To me is one most import thing I do...connect with others talk share be...no be alone...be understood, belong...share help, be of use.  If you just give us bit...want to start video groups us here forum...safe place us talk.  talk can oft be easier than type read.

<3


mrranch2
Posted: Monday, January 25, 2016 10:53 AM
Joined: 6/26/2015
Posts: 5


I'm with you and beyond annoyed.  I was diagnosed FTD possible LBD five years ago and have yet to find a patient support group within 250 miles of us (we live in the Midland-Odessa metroplex in west Texas--about 300,000 people within 25 miles of each other).  I was appalled to find the Alz Assoc here has four support groups for caregivers, nothing for patients. Nursing homes and assisted living centers have nothing for the public.  Even the Area Agency on Aging Regional Office here knows of nothing, and some professionals don't even know the Alz Assoc has an office here!  Everything in Texas is in Dallas-Ft Worth, Austin, San Antonio and Houston!

 Have found one psychologist who takes medicare dementia patients, one MSW and one psychologist here locally who are considering starting a group for us (my wife and I are working with them to accomplish that), but otherwise NOTHING

 The general routine is "Here's your diagnosis and prescriptions, see you in three months.  Counseling?  You wouldn't benefit from counseling because you wouldn't remember it.  It is what it is!!!" What are we?  A paragraph in a textbook to give someone who wants to be a caregiver something to do?  Do they think dementia ends all questions and concerns the patient has?  (Sorry, my FTD started taking over).

My wife and I are striving to get something going here, but HIPPA is a BIG roadblock.  Any and all suggestions and help will be appreciated.  I need to meet and talk with some of my peers.


Iris L.
Posted: Monday, January 25, 2016 11:09 AM
Joined: 12/15/2011
Posts: 16104


Paul Hornback and his wife began a Memory Cafe in their area.  He posted about it in the YOAD board.  You might do a search to get some ideas.

Iris L.


kwc
Posted: Tuesday, January 26, 2016 8:17 AM
Joined: 5/22/2014
Posts: 37


YES YES YES  I SO FEEL WHERE YOU ARE COMING FROM!  I am in the same situation. 

I look things up online for a answers an get care giver stuff , run  more do puzzles listen to music an etc  all is good but .... I (we, being patients) have simple questions sometimes.  I try to ask an I get this look like awe. Sorry but awe don't cut it.  I would be nice just to be able to compare notes with another person in the same boat I not somebody sitting on the sidelines. I do appreciate those people for trying but.  I understand why some people may feel lonely feel for those patients but everybody puts so much emphasis  caregivers which they are very important and appreciated but we his patients need a little something too I feel better I'm sorry 


Tom2015
Posted: Tuesday, January 26, 2016 12:56 PM
Joined: 11/7/2015
Posts: 1


Hello,

My wife is looking for the same connection with others actually experiencing what she is. She sees me go off to meetings w/o her and wants a group for her.

Tom


mrranch2
Posted: Tuesday, January 26, 2016 1:12 PM
Joined: 6/26/2015
Posts: 5


Any of y'all in west Texas?  Especially the Midland Odessa area?  If so, maybe we could get something going
kwc
Posted: Tuesday, January 26, 2016 3:35 PM
Joined: 5/22/2014
Posts: 37


Unfortunately no I live in Arkansas North Central
Iris L.
Posted: Tuesday, January 26, 2016 6:33 PM
Joined: 12/15/2011
Posts: 16104


I could not locate Paul Hornback's threads about how he started his own Memory Cafe.  But here is information about starting a Memory Cafe.  

Neighborhood Memory Cafe Tool Kit

http://thirdageservices.com/Memory%20Cafe%20Tool%20Kit.pdf


I also have another thread about how couples started a support group in their own living rooms.  I will look for it.

Iris L.


Iris L.
Posted: Tuesday, January 26, 2016 6:53 PM
Joined: 12/15/2011
Posts: 16104


Here is the address of the thread of the article I spoke about of the couples that started their own group, and another group.  

Please disregard the word "victim".  It was in the title of the newspaper article.  We are not victims, we are pioneers or warriors!

Alzheimer' victims benefitted by social groups 

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147501247

Iris L.


Iris L.
Posted: Tuesday, January 26, 2016 7:18 PM
Joined: 12/15/2011
Posts: 16104


MichelleO posted on the Spouse/Partner board about how she found support for herself and her DH with MCI.

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147524493&page=-1

Iris L.


Mimi S.
Posted: Wednesday, January 27, 2016 9:57 AM
Joined: 11/29/2011
Posts: 7036


If you can find the names of a few PWD in early stage, do invite them to your home. See what happens.
Paul Hornback
Posted: Wednesday, January 27, 2016 2:05 PM
Joined: 8/9/2013
Posts: 584


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.

So we began to explore how we might start one in our area. We asked our church if we could use their fellowship hall to host the meeting. We got help from the Alz Association, our local health department, the local extension service, and Hosparus. These partners helped advertise our Memory Café and occasionally drop in to see if we need anything. We meet once a month for about 90 minutes to two hours. We have time for conversation and for snacks (coffee, tea, cake, fruit, cobblers, ice cream, etc). Generally, everyone brings a snack. Our Memory Café includes people with the disease and their care partners. It is a safe environment for people to talk or just enjoy the conversation of others and an occasional program.

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.

It is not difficult to start a Memory Café. You just need a place to meet, a way to get the word out, and someone who might be willing to help lead the conversation. If you have other questions please let me know. Our memory café has been going on about a year and half now.
God bless, Paul Hornback

Iris L.
Posted: Wednesday, January 27, 2016 2:20 PM
Joined: 12/15/2011
Posts: 16104


Thanks, Paul.  Your Memory Cafe sounds great.  I like the idea of a theme for each monthly meeting.

Iris L.


Mina Mistry
Posted: Wednesday, January 27, 2016 8:15 PM
Joined: 12/30/2014
Posts: 4


Hi  - my husband too has early onset and I am looking for a support group he can attend and meet folks in the same situation in Central New Jersey.
Mimi S.
Posted: Wednesday, January 27, 2016 10:41 PM
Joined: 11/29/2011
Posts: 7036


Mina, Do call our help line 1-800-272-3900. Ask for the Early Stage Coordinator for you area. Ask for an e-mail contact.
bhadd55
Posted: Tuesday, March 15, 2016 12:56 PM
Joined: 3/15/2016
Posts: 4


Hi,

This is my first post, and I am excited to find others posting concern about support groups being available for caregivers, but not for PWD. I find that when I go to doctor's appts or study interviews, I have to bring a friend or family member with me. I get it...the disease renders us not the best historians for medical purposes. But why is this an issue in support...especially for those of us who are still functioning well enough to engage? Isolation is such a significant part of this disease process. Why would those orgs out there to help us continue to perpetuate that? I'm really frustrated by the walls and barriers I have run into just trying to locate resources and support. I facilitate support groups with cancer patients and I can tell you nobody would be kept out of group if they didn't have a support partner. These weekly groups have turned out to be life saving for the people in them. I can't tell you the number of times I hear others mention to group member,  "you guys get it. " Please...I would like to start a support group for others in the Phoenix area. Does anyone have any ideas on how to get this started? Where would I get names of others in early stages or those newly diagnosed? Nobody should have to go through this alone!


Iris L.
Posted: Tuesday, March 15, 2016 6:54 PM
Joined: 12/15/2011
Posts: 16104


Welcome to our online support group, bhadd.  We aim to support each other on this board, especially because most of us do not have a local support group to attend.


Please review Paul Hornback's post above, to see how he and his wife started their own Memory Cafe.


Can you tell us more about yourself?  What is your regimen to keep yourself so functional?


Please come back and post often.


Iris L.


Mimi S.
Posted: Tuesday, March 15, 2016 7:12 PM
Joined: 11/29/2011
Posts: 7036


We know doctors are different. I still live by myself and my local doctors do not ask me to bring a caregiver. I go to NYC for my neurologist and gave up driving in the city years ago. Luckily one of my daughters does that.

Paul's cafe is a wonderful thing. There are many throughout the country. Another I know of in central PA is also in a church hall.

Paul, if you're still reading this, how did you get the participants for your first group?  Sometimes just advertising in the church bulletins and local newspaper will do it.

Good luck to all who try. It is sorely needed by all of us.


lpn12659
Posted: Wednesday, March 16, 2016 1:07 PM
Joined: 5/26/2012
Posts: 31


I started the 1st Memory Cafe in Lancaster PA. When I was diagnosed 5yrs ago. there were no support groups for the people in the early stages of dementia. I went to a support group with my Mom and they told my Mom that she didn't belong there. I asked why not and they told me that it was for caregivers only. I said, " I guess she's my caregiver then because I'm the one with young onset alzheimers. I got pretty upset with this and started my own support group. I went to my Pastor and asked him if we could use a room in the Church for my Memory Cafe on the 1st and 3rd Fridays of the month and he allowed this. I put up flyers in stores, community gatherings,  and advertised in the local newspapers.  Ask your Dr. and Neurologist if you could put a flyer in there office to advertise about the support group. Tell your Dr. that he could give your phone number to newly diagnosed patients. Contact your local Alzheimers Association. I supply the snacks ( cookies, chips ) and water. I allow the families to come and participate, I never turn anyone away. We All need help with this terrible disease. My local hospital even gives my name and number out to the newly diagnosed people.
Mimi S.
Posted: Wednesday, March 16, 2016 3:05 PM
Joined: 11/29/2011
Posts: 7036


Thanks IPN.

Yes, it would be nice if the Assoc. did have support groups, memory cafes, activity centers for us, but the reality is they don't have the staff to do it. So, those of us who can, do give it a try. IPN is an example of what one person can do. What a service to that community!
Iris L.
Posted: Wednesday, March 16, 2016 3:17 PM
Joined: 12/15/2011
Posts: 16104


lpn, thanks for sharing how you started your own Memory Cafe.  It's great.  I hope more PWDs can do the same.


Iris L.


Joe christensen1960
Posted: Sunday, October 2, 2016 3:19 AM
Joined: 9/26/2016
Posts: 19


So sorry to hear about your husband. I am 55, with Early Onset Alzheimer's with Lewy body demential, but am still able to type and think, which is so much better than my spoken words.  Please google the name Leeza Gibbons.  She has a support group for us with this disease, and care givers.  I believe it is Leezas care connection.  I know there aren't many places for us with this disease, it's like we're ghosts, and they only see us from time to time.  The Alzheimer's association really only knows how to deal with care givers, it's a real shame, but it's real life. Remember care givers can raise money for them, as we with Alzheimer's, can only do it when we remember.  Best of luck, I hope the info helps.    Joe
Mimi S.
Posted: Sunday, October 2, 2016 1:19 PM
Joined: 11/29/2011
Posts: 7036


Hi Joe,

I'm so sorry that you and some others have felt that the Alzheimer's Association is not designed for you, but only Caregivers.  You feel this is because we, the PWD, do not raise money. Not always. In my first year raising money for the Annual Walk, three of us PWDs were honored for being among the top money raisers in our area.

My experience as a person with the disease differs from yours. It is true, that there do not seem to be as many programs for those of us with the disease as there are for caregivers. I have tried and others in my area have tried to provide in person sites and programs, with no success. Those of us who admit to our disease are relatively few compared with the number of diagnosed and un-diagnosed who have the disease.

As a PWD I have been treated with kindness throughout the years. When my desire to travel to the National Forum became too difficult, the leader of my local office provided transportation for myself and another PWD to get there a swell as some other programs. 

The challenge for National is provide services to all PWD regardless of the individual chapter's ability to raise funds. Nationally there has beer an art program "Memories in the Making" for those in Residential Dementia Programs.  The Greater Pennsylvania Chapter has recently announced a choral program for PWD and Care Givers/partners. A desire to sing rather than a vocal test is the criteria to join. No, it's not in my remote area, but one can have hope.

 


The_Sun_Still_Rises
Posted: Sunday, October 2, 2016 3:05 PM
Joined: 7/24/2015
Posts: 3020


I am glad that some people who have non-progressing MCI or non-progressing dementia feel that the Alzheimer's Association, and this little forum (with so few of those of us who are active online) and is just in written form, is enough for them. 

However, signing the praises of the Asso, or denying that the rest of us have needs beyond that...will not change that most of us have greater needs for connection and sharing and support than can be provided this way. 

Most Alzheimer's Orgs (this Asso, included) do not focus on us, the people with the diagnosis...that is just a fact...and it really doesn't matter WHY...they just don't, and that is tragic, sad, and a huge loss...but whatever. 

Thankfully, many people with the diagnosis, who are early in the disease process have done far more than light a candle and try be positive.  Indeed, many have started blogs, and organizations, and are running and hosting numerous weekly support groups via video for the ACTUAL people with dementia.  These groups are VERY understanding and inclusive and welcoming of people with dementia and will work with people who have trouble communicating. 

The FTD group run by Howard Glick runs them.  Dementia Alliance International (created by people with dementia for people with dementia) runs numerous worldwide groups.  Dementia Mentors runs numerous ones throughout the week so if one time does not work out, others may...you can attend them all.  They are, however, generally closed to people who do not have actual diagnoses of dementia or Alz...although many have their caregivers nearby helping them with the computer. 

Teepa Snow and Dr. Allan Power are working their hearts out trying educate our caregivers and are all over youtube. 

This, of course, does not take the place of in-personal, fairly local support groups...which are extremely few...and often become taken over by someone who mistakenly thinks we so dumb that we want glue macaroni on paper with others. 

The sad fact is, if you are under age 65, are still with it and functioning in the world, and are diagnosed with dementia of any kind...you ARE a pioneer, whether you set out be one or not...you just are, you were cast into this role.  You will likely be forced educate your doctors, your family and loved ones, and ALL who come in contact with you...just what it is really like, and how able you still are. 

The other sad fact is, the stigma against us is pervasive...and even runs among certain forum members who are so early in the disease, are either non-progressing, and/or merely have MCI...so they indavertantly perpetuate the stigma without realizing the destruction it does our lives.  Sadly, some of them are on the advisory committee of the Alz Asso claiming speack for the rest of us. 

And while it does not excuse it, make it any better, or let the Asso off the hook...everyone should take heart in that nearly ALL associations are like this the people they claim serve.  This is true of cancer societies, of autism orgs, and a great many others.  That doesn't make it right.  It also doesn't make it any less shocking when you get diagnosed and try turning them for help...only find out they do not, in fact, help. 

And for those that argue slow improvements...in terms of actively progressing people with dementia, slow means, literally, not in our lifetimes...and truly, that is just not good enough.  It is truly, unexcusable...and people have a right be hurt, disappointed, and angry. 

When you deny them this, and go on about how great they are for you, it is "invalidating"...and is not, generally, a nice thing do.  Think of when you say, "my knee hurts," and some one else says, "no it doesn't," how you feel...that is how your posts come off. 

For the forum be safe for people with the disease...you have find a way make it ok for people post their dis-satisfaction with things, like services for us. 

Now please...let it go...and go out and enjoy the wonderful autumn weather...life is short.

<3