24/7 Alz helpline

60 falcon

Twice now I've called the helpline and have asked to speak with a care consultant.  Both times the people have been nice and understanding and all that, but overall have been unable to assist me.  I haven't been impressed, just my opinion.

JoseyWales

That was my experience, too. They were nice, and were able to help me prioritize what I needed to do. But they didn't offer any true help or specific advice on where to turn next. Just nice people who listened to me.

I called 3 times. Once I was told they were busy and someone would call me back. No one ever did. The other 2 times they pretty much just listened. 

Fairyland

That’s too bad 60 F.  

I’ve never tried a helpline for problems like dealing with PWD.  I haven’t even been tempted since I started reading this forum, I felt like I could find most answers or ask and someone will reply.  Apart from the one about, how to not feel bad about the general situation! No easy answer for that, except maybe run away and change my identity!

What were you hoping for?  I wonder if there is a way to help specifically.

Faith,Hope,Love

I had pretty much the same experience.  I called once and they said someone would call me and never did.  Then I called another one to ask how to handle a situation with DH.  The person on the other end told me they were a social worker.  She was very nice and researched any help in my area, which isn't much.  Then she gave me the number for the local office on aging.  I redirected the conversation several times to mention the situation I was calling about.  She never gave me an answer.  She just continued to talk about looking for local help and sent me some info on a presentation she'd given.  I then, asked the same question on the message boards and got the help I needed.  I'm thinking that if you're not living with someone who has Alzheimer's/dementia that you really don't understand what someone else may be going thru.  What's that old saying about walking a mile in someone elses shoes?

EllisA

Same experience here.  My local ALZ chapter doe one thing only  "raise money on the longest Day".  What a joke!!!!!  no help for this patient at all.  Bummer

ImMaggieMae

I called once or twice in the early days. They weren’t very helpful. I was trying to find a neurologist and the gave me websites to check. Several of the neurologists were retired, two were dead and the others weren’t accepting new patients. I finally found one through a friend, but it took 7 months and an urgent referral from his PCP to get in. Even with the urgent referral it was still over a month.

Rescue mom

I was also disappointed with the call-in counselors in the past. They were nice, and did listen, but virtually no concrete help. My local Alzheimer’s office is FAR more helpful. At least they knew local resources, such as local docs and specialist attorneys..

 Now that I’ve been dealing with DH Alzheimer’s a while, and now helping family with LOs with Alzheimer’s, I think  there’s nothing the national especially  *can* do, in many cases. What was needed IME—not always, but mostly—was individual action.

The big exception was very early callers, who were truly clueless about anything regarding dementia. Maybe early on the hotline is helpful if somebody doesn’t know what POAs of health care directives, etc., are, or that they’re hugely needed, or that SS disability exists, or fibs may be needed and good. And hotline can help in crisis.

 But most people I know were in between those very early and crisis levels.

The #1 biggest problem was/is more caregiving help—how to pay for it, and/or actually finding good aides while handling work and kids. Or deciding to place, then deciding on which facility.

#2 problem, something that took action by the individual, such as choosing a facility or getting appointments, or even selecting, to a doctor/lawyer.

Those are things the hotline just can’t help much with.

I probably haven’t described the cases very well, but maybe you get the gist. Most times the callers (IME) knew what was needed, but couldn’t quite do it. Hearing it from experts often helped convince early caregivers, but things still had to be done. Hotline simply can’t help on a personal, local level. And many are almost in shock, they are the frog in the boiling water. They needed a lot of personal, localized help.

I still think more caregiver help is crucial, but I have no idea how we’ll ever get it. 

Joydean

Everyone’s experiences is a very sad situation. In my opinion! Mainly because when someone new comes on this board that is the first information they are given. It was enough of a disappointment for me I almost decided I was in the wrong forum. I’m so glad I stayed and read and learned from others experience. Just my opinion.

Rescue mom

I have absolutely had far more useful, practical help here, from this forum, than any other place.

But joy—and apologies, I don’t recall your early questions so this is not about you— also made me think: I’ve advised calling the 24/7 hotline. But in sort-of self defense, usually when someone had so many big questions, and seemed to be just starting with dementia care, it was A Big Situation, more than I could deal with.

Like, someone just now sees their LO is in (from their description) midstage dementia at best. They have never dealt with, or seen, dementia. They have so many issues and questions I would not know where to start, and I would advise the hotline as a first step.

A single, specific problem like wandering, or not reading, toileting, or what activity might appeal, seemed like something I *might* help with. But not explaining big-picture, everything from the start.

Lills

My son lives 160 miles from me and was very much removed from the day-to-day caregiving.  

DH didn't recognize him and son didn't know HOW to converse.  

On one occasion, son was willing to care for DH who was in stage 5-6 at that time so that I could take my darling granddaughter to the Children's Theater.  When son and DH were at a MacDonald's parking lot and ready to go home, DH jumped into the driver's seat of my son's car.  DS tried every thing to try to convince DH to switch seats and was beginning to panic.  After a LONG while (as per son's story), son called the ALZ hotline.  The lady with whom he spoke suggested telling DH, "Dad, let's go get a hamburger!"  DH immediately jumped out of the car and they both went back into MacDonald's to eat a second dinner.  My son was so grateful to the ALZ hotline! Son RAN ahead on the way back to the car

Ed1937

We called twice. Both times somebody would call us back, and they did. But it was several hours later, and no longer needed like it was at the time. 

I learned more, and got much more help here than any other place. This place has been a lifesaver for me. And I appreciate so much all the people who answered my questions, even if their particular post wasn't the one I followed. Just the fact that they were kind enough to take their time to try to help means everything.