What would you ask ALZ association help with?


Am going to focus on the plight of the unpaid family caregiver, compassion fatigue and respite! I have an appt to meet with our local chapter of the ALZ ASSN to discuss my needs as the soul 24/7 caregiver for my mother, unpaid and overworked is all that is on my mind...besides respite...I don't really care abuot disease research at this time as it is not going to help me in my immediate situation....what would you ask about if you could? I need some idea's!

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yes i agree wholeheartedly....that is actually how it all started AUG 2013 local town counsel/alz org collaboration, big meeting with all the county SS workers and AA bigwigs... I stood up loud and clearly stated the typical does not work for a ALZ, it does not suit their needs...and was hushed...been eyes open ever since and that is probably the real reason i did not do the walk this year....why should i go thru all the stress of getting everyone to donate on our behalf for that ... I shall not let the issue go tho....i got a plan and will do my own to contribute to the need for proper caregiver support! Time permitting of course, i have decided we come first!
Thanks for your confirmation of what i felt, appreciate the feedback....i have three goals to support: Plight of unpaid family caregiver, burnout/respite resources, and death with dignity act!!!
Since i am in Oregon i am proud we have that but dementia i am learning may prevent that option, still researching that!!!
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jujubean - I am so sorry to hear that. This forum is really helpful, but we caregivers REALLY need help to ask about detailed questions interactively when we have emergencies. I don't think a lot of well meaning organizations understand that. I tried talking to a local government group last week, they really were too busy. Our geriatric psychiatrist for my Mom is good for big picture issues, but there are lots of "nuts and bolts" issues where we need help every day. I have had to just become resourceful for my own creative, Internet searching, forums like this, etc. But no way is it close to being enough. We really need a national Alzheimer's Family Caregiver organization. The issues we face are so big, so complex, so frequent, etc., that little local groups and the limited caregiver support of the Alzheimer's Organization (which is focused on social activism), really are not enough. My God, who are the next generation going to turn to when this tsunami of elderly with Alzheimer's hits them?
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nope Jeffrey that is what caused this meeting, I do the walk every year, they pester me for money constantly calling about the walk, which I usually do, and this year the phonecalls start and I tell them sorry things are too hard with ma I have no respite and I just cant"
response..."let me see what I can do to help" nope.it was "well let us know if you change you mind, we want you there: you want my $$ there that is it..

so last week in an emergency..... I needed 1 simple question answered and it took 3 days and me losing my temper so bad I threatened to have the media there to figure out where there dang money goes, as you have never lifted a finger for me... to get the freaking answer that was "here is the link you are looking for" that place is an inefficient joke and now I won in principle I have no desire to share a dang thing with them but to move forward on my own!
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I would ask about respite services in your area and caregiver training to cope with Alzheimer's Disease behaviors. To be honest with you, I am sorry the ALZ Organizations I have talked to have been focused on news reporting and activitism, which is good for public awareness, but in terms of answers and help, I haven't found any help from them. I really hope your experience is different, but I would try for information on things they should know about - local respite groups and caregiver training. I think if you have realistic (low) expectations, you will be less disappointed. Please let us know how it works out. I would like to believe some chapters are more helpful than mine.
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