I've read various comments on this site about the Alzheimer's Association, and I was wondering how many of us have contacted them and what the results have been. My experience has been great with the local chapter, but apparently there's a lot of difference from chapter to chapter. Since we and our LO's are their target audience, I'm curious as to how this site's members feel they're doing overall.
My Alzheimer Association was a huge disappointment to me. We live on the outskirts of Houston. There have been quite a few walks and other events for AD in our area. In spite of the promise that 75% of all monies raised in an area will be spent on functions in that same area..it never happened. This fact is known by local Memory Care facilities and an executive in one said getting them out of "downtown Houston" is a lost cause...long since tried, never succeeded.
I called them on several occasions. Response to my requests were long in coming. As an example..I asked if they could direct me to some elder care attorneys in my area. Days later, I received a dim, blurred copy of a list that was obviously copied from copies... NONE were in the north side of Houston, much less my area...and some of the ones I called were no longer at the number listed. They were simply worthless to me.. and I know I speak for about a dozen other people I know in our area who agree 100%. This is specifically directed to the office in Houston. Very "self contained", - and they have their functions in the same places ...in the evenings particularly...which would have gotten me home at 11:30 or later...if they ended at 9:30. Scary to drive in the dark...who would stay that late with my husband?.. get my drift?
I do know others have better experiences with theirs. I get emails all the time asking me to pledge more money to them. No way, Jose!
I called their 800 number because I didn't know what to do about a neighbor. They put me in touch with all the right places and even called back the next day to see how things were going. This was all way after hours
I called them once about how to handle the problem with DH insisting oh ex lax. Their suggestion would not work so I ask about it on this forum. Someone suggested putting blue m&ms in the ex lax box. My DH had been wanting them for months. After I gave them to him he put them up and said he was afraid to take them. After that I always come to this forum for the best suggestions.
ROFLOL, Faye Bay I remember telling you that about the Blue M & M's, and taking the rest of the colors and a good book with you to a nice relaxing bath. That brought back a chuckle. Thanks!
I did not personally have a good experience when I contacted the Chicago HQ. I think there are better AD orgs. Can't vouch for it, but I've been told that AA was begun by a couple of women CG's with the idea of helping CG's, but as it grew, the powers that be changed the emphas to raising money for research. However, my personal experience aside, I think they do a lot of good for a lot of people. Having worked for different volunteer orgs, I know that phones are often answered by vols who don't yet know the ins/out of the org, so sometimes you get someone who has poor phone etiquette and just doesn't know the answer. No doubt regional offices are all different and I do recommend people call AA, but for me personally, it didn't work out.
I contacted the local chapter and asked for a list of elder care lawyers. I got a list of lawyers apparently copied from the phone book. None were elder care lawyers. My local chapter covers most of Illinois including Chicago. Most of the activities are in Chicago. We are over 200 miles from there. I have not contacted the crisis line.
In our fairly rural area there are two monthly support groups within 10 miles, one afternoon and one evening, and an early stages group as well. I don't go regularly because I have never learned much I didn't already know. I was frustrated one time when I went to the early stages caregiver group very upset and said so and the leader quickly changed the subject to the latest information from the newsletter. I got a few useful suggestions, for example for an auction company, but they couldn't help me with information on home renovations for disability and didn't show any interest in getting information from me on what resources I had found. There is frank talk at the meetings about local doctors and nursing homes.
Bettyhere--Could you please elaborate on the organizations you have found more helpful?
Nancy--Have you considered contacting the Alz Assn national office in Chicago and letting them know about the issues in your area? It may result in nothing, but the way they're operating sounds pretty ridiculous.
same here. seems the chapters need updating and modernization to really help. i called after i needed to get inhome help and wanted to know if they could recommend certain agencies for AD specific care. left phone number and an email later. no reply EVER. wouldnt ever consider calling them again or referring them to someone in REAL need -unless maybe that 24hr hotline. divvi
Mine sent me mimeo lists off the website of the state eldercare listing facilities that accept dementia patients - it was way out of date and useless. Otherwise, they send canned responses pulled from the "brochures."
Does anyone ever READ the brochures we get, with pretty pictures and nice type? (I mean not only us, but the people who write them!) They are so generic as to be useless.
I am not impressed by the AA around here though they seem to have a lot of walks. I have never been impressed by anyone's walk.
i have never been involved with our local group. Don't hear much about them, but we are a small town. However, one thing does bug me about the ALZ Store. All of their gifts and helpful items that are sold are very, very expensive. You can find the same items on other sites at a much less price. I find this troublesome - since they are supposed to be there for us.
We used to have an office here locally. I went when DH was first Dx'd and the lady was very nice, gave me a lot of brochures and pamphlets. A few months ago they closed this office down along with others in various places. I think they moved this one to Charleston SC which is about a 2-1/2 hour drive. I can learn anything I need to know from this site and have never thought of contacting AA.
Our local Alz Assoc is great. DH and I go once a month to a group for those with AD and their caregivers. DH really likes it and we have a lot of fun there. This group recently disassociated from the national group. They do lots of caregiver groups too.
I have had nothing but good things to remember about the Dallas Alz Assoc. The ladies on their staff are so nice and helpful. They have put on numerous seminars and they have been very helpjul for me but especially for my Kids and several neighbors. We are going to have our 50th wedding Anniversary next month, more later, and I lhave invited them to put up a little table with information. I have a Tribute page for my DW and hope to l invite donations from our friends. Alz needs more research and I am more than willing to help. Wish I had more money to contribute to them. Especially Denise Smiley. she has been our local support group leader also and it is so good. We need them. bill
I called the hot line twice. And the help I got there was wonderful. I also paid $100 for a caseworker visit. That was worthless. I've never been able to go to an in person support group. Don't know if they are good or not.
Most of the stuff I got from them by mail was also pretty useless or stuff I could have found for myself on the Web. For information and in-person caseworker visits, I suggest your local County Area Agency on Aging. All of their information was very useful and current.
Mixed reaction here. They try hard, but the info. is not as good as we get here on this site. Have tried to find out abut hospice from them, and although they say I can look it up on Internet, I tried and I still don't know. I'd probably get more info. from the nurse at the Community Health Care Centre, or G.P.
Dazed you can turn that off. Look at the bottom of the email. It will take more than one attempt to turn everything off, but they stopped the begging emails on my first attempt. In the end I turned it all off. I'm not going to Washington. I can't. I can't even get to my daughter in NYC, which is 2 hours away.
Thanks, Starling. I'll try that. It's not just emails, though, but snail mail and telephone calls also. I finally agreed to send out some stuff for them in February. I may need them later so I guess I shouldn't complain.
Bettyhere--Could you please elaborate on the organizations you have found more helpful?
Marilyn in MD - It was so long ago, I'm not sure how accurately I remember or how any of the orgs are now. The American Health Assistance Fdn had an Alz Family Relief Program, but I think they ran out of money--not surprising--or chose to use money to do a lot more Alz Disease Research among other medical conditions.
I was involved for a bit with the John Douglas French Alz Assn (still a mbr) that is allied w/UCLA and they underwrite young AD researchers. Art Linkletter is very involved in the org & I've donated a couple of old cars to them.
The Fisher Ctr for Alz Research has a very good reputation. I just know about them but never had direct contact as with the others. I think there are other family groups, can't recall any now.
I had occasion to speak to someone at the Ronald & Nancy Reagan Fdn in Chicago, I think they are allied w/the Alz Assn. Whoever I spoke to was a doctor and we had a couple long very agreeable conversations.
There was a Calif state family relief program that I used here in Los Angeles for a couple of years, they essentially paid for most of DH's day care. But they, too, were defunded, don't know their current situation, can't remember the name--something like LA for Seniors.
There are certainly many fdns & universities other than AA that do AD research. I walked once for AA, raised over $3000 I think, but I have chosen to support some of the smaller orgs, you never know where a breakthrough might come from. Things have chgd so much & money so scarce, I have no idea what's happening now, but I think you can stil get some good assistance from County facilities for aging, etc. At the time, I just kept looking and stumbling around finding places, but I'm not doing anything like that now. But stuff is out there--I think AA gets more than their share. Lots of big names, lots of publicity, lots of solicitation--but I'm not sure just what has come out of the org for all of that.
Haven't tried the local Alz Assn chapter or the hotline.
The Alz Assn message boards have been a real good source of day to day suggestions for how to fix specific problems.
This site has more specific advice about the financial issues for spouses than the Alz Assn boards, though. The financial answers on the Alz Assn boards are better for kids taking care of parents, not so much for wives-husbands-partners of ADLOs.
flouncy, I've found the same thing as you. The AA boards mostly deal with the specific problems that "the daughters" have when they are caregiving. They aren't harder or easier than the problems spouses have, but the two sets of problems are sometimes quite different.
Both this board and the AA boards are very useful for general dementia advice for caregivers. But once you have figured out the basics you only need one of them.
I contacted the local chapter when DH was originally dxd. They are kind and caring people but really don't provide any value added services. When I called asking for a list of neurologists who specialized in dementia, they told me to call the local hospital for a list. When I asked about facilities specializing in dementia care, they sent me a list from the state internet site on all facilities. When I asked them if I could attend the new seminar on EOAD without my spouse (since he was/is in denial) they said no because it was designed for both spouses, not just the caregiver. When I asked them what other resources they could provide for me with a EOAD spouse, they said they really didn't have resources yet but hoped to receive funding in the near future so they could expand and provide help for that population. I complained to the chapter's director that I felt they were only providing lists that I could get on the internet and what I really needed was good information on specialists in the field and specialized sevices, she advised that they do not recommend/endorse any doctor/facility because they do not have the resources/expertise to evaluate them. At the end of the day, I found their services useless.
Here on Long Island, NY, I have found the local AA resources relatively worthless. They also do not always provide truthful information. We were (and still are!)looking for an EOAD support group for my wife, and I would obviously join the spouse/caretaker group. The local Alz. Assoc. had no such groups listed on their website until a few months ago. Once I saw the new listing, I contacted them to be sure the group would meet my wife's needs. I was told that my wife would be meeting in an EOAD group of about 5 or 6 people while I met with spouses/caregivers. I was told this was a new group meeting monthly and we should come to their next Tuesday evening session. We came and ... they only had a group meeting for caregivers. The Director said they really didn't have an EOAD group yet ... but they were hoping to start a group for those with EOAD. Fine ... but why not be honest with me on the phone instead of telling us to come down for a meeting that they knew they weren't going to have??!! All of their handouts were 'boilerplate' and of no help to anyone who had already gotten even a little bit of information on their own.
Fortunately, however, we also have another independent group on Long Island, the Long Island Alzheimer''s Foundation. This organization does provide many services for people with AD at various levels ... and for spouses/caregivers ... although they do not have any group specifically for those with EOAD. My wife and I attend weekly support groups for those in early to moderate stages. These weekly groups meet in separate rooms at the same time, each led by a well trained social worker. My wife and I have bonded very nicely with those in our groups; in fact, we all arrive about an hour early to have lunch together before the gorups begin! The spouses/caregivers are very supportive of one another and we often call or email during the week if we think we can be of help and/or offer support. The social workers have also been very helpful to those who have needed guidance re assisted living facilities, in-home care or companionship, etc. I just wish LIAF were closer to where we live ... and that they had a group solely for EOAD!! Between LIAF and reading many postings each week on this website, however, I feel like I'm receiving good support. The Alzheimer's Association on Long Island seems to be doing a lot of good work in the area of 'day care' programs for those with moderate to severe AD, and they have lots of support groups solely for spouses/caregivers. But they have not met our needs as an EOAD couple at all.
Our Maryland Chapter has been helpful to me. Of course, all of the support groups are sponsored by them and I have participated in several and am in touch with several folks I met there. I called the hot line a week or so ago to discuss my dilema regarding Assisted Living vs Long Term Care and the worker (volunteer ?) talked with me for quite awhile and then sent me a packet of information regarding the nursing home decision.
My only complaint is regarding their incessant fund raising. I do donate to them but am hounded by mail and email to the extent that I fear that most of my donations must be going toward more fundraising.
I agree with baltobob about the fundraising. I don't mind the email, but I do resent getting so much mail that I know that what I donate goes to cover postage just to ask me for more money. In fact, I've pretty much quit giving for that reason.