I have cared for 4 people in my immediate family for the past 30 years. My mother in law passed away two years ago after a 12 year battle with Parkensons and Alzheimers. Now my mother has Alzheimers. Her condition did not become apparent until shortly after Katrina and she had to evacuate New Orleans. One year ago her husband of 20 years literaly put her out on the street and told my brother and I he didn't want to deal with her any longer. At this point she was still lucid and could do light house keeping and personal grooming for herself. Still he and his family told her to live elsewhere as he was sick now. HBO doesn't and perhaps is not aware that this happens on a regular basis, as was told to us by her doctors. We took care of her as long as we could at home and against my wishes, my brother put her in a less than adequate nursing home. Now I am saddled with even more grief and guilt. HBO didn't touch the tip of the iceberg when it comes to lives destroyed. Those of the loved ones and the ones they love. Also how do normal people deal with such extrodinary circumstances and stress without loosing their minds in the process.

What would Desmond and Molly do? And welcome to the forums, Beatle-maniac!

Neither HBO nor any other major media producer is going to touch a story like your mom's. Unless it was the middle story in a 3-parter. No way they'd end a show on such a somber note.

How do normal people deal . . . without losing their minds? Well, some do lose their minds. But most caregivers rise to the occasion. What's interesting is how families choose who the caregiver will be. I think if the right person weren't chosen so often, there'd be a lot more minds lost.

Pat, you mentioned grief and guilt. Grief I think I understand, but what do you feel guilty about?

I can't speak for Pat, but for me, Alan, it was second guessing my decision. A head over heart thing. I knew what I was doing was for the best because my folks could not look after themselves, I was forty country miles away and I could not handle any more middle of the night emergencies. Plus, Mom was so delusional and paranoid, it was a matter of time before she hurt herself or someone like Dad.

I knew all that in my head, but in my heart you always ask "could I have done better?" "Could I have gotten them more help at home?" "What if I moved them closer to me?"

None of those things were viable, but that's the head over heart thing. Guilt, I tell ya!

It might have been nicer if the film had shown what happens to families. The whole sibling thing, the frustrations of having no support, and what happens when the LO doesn't want to and will not give up their DL's.

I guess you'd have to make a mini-series about it. A different caregiver/family per week and their journey.

I am sorry to say I missed the HBO special. I can tell you that I feel that the actual experience of caring for a loved one with alz is almost more reality than most people can handle.

quote:

Originally posted by Michelle W:
I am sorry to say I missed the HBO special. I can tell you that I feel that the actual experience of caring for a loved one with alz is almost more reality than most people can handle.

You do not have to have missed the special. It can be found on the HBO.com website and can be veiwed free anytime you have some freetime to watch it on your computer.

quote:

Originally posted by rosanne3121:

quote:

Originally posted by Michelle W:
I am sorry to say I missed the HBO special. I can tell you that I feel that the actual experience of caring for a loved one with alz is almost more reality than most people can handle.

You do not have to have missed the special. It can be found on the HBO.com website and can be veiwed free anytime you have some freetime to watch it on your computer.

I missed it too. I'm checking it out on youtube right now. But, I suppose if everyone else was dissapointed, I will be too. So I might as well not waste my time with it.

Well..... look on youtube if you want to see it

I think that the first response for most of us dealing with Alzheimer's on daily basis was disappointment. Then I started wondering who the target audience really was. I think that HBO was trying to educate the population at large, not to educate those of us intimately involed with AD. I think this was a good first step for HBO. If HBO has showed what most of us go thru on a daily basis I think it would have been too much for the population at large. I think people would have become uncomfortable and turned it off. I think there's a fine line between trying to get the word out on how horrible this disease is and scaring people away. I wish there was something different for those of us who are more experienced but still looking for advanced information.

Terri in Iowa,

I'm in agreement with you. I think HBO was trying to educate people who don't know much or anything about AD/dementias. It was a good start. I don't think they wanted to show the horrors and have people turn it off or just become terrified!!
Hopefully, they will do many more segments (at least that's what I've heard/read).

I am a person with EOAD and a caregiver of my Mom with AD.

Perhaps we should contact HBO to find out?

Thanks for sharing.

i am surprised at the responces I have read. I have dealt with Alz for over 10 years losing m mother in 2007. I felt the special did a good job of raising awareness and touching on the breadth of the issues associated with the disease and related care. Yes it did not go deeply into the emotional trials, the economic cost, the STRESS, the conflict it creates as you try to do your best and to do the right thing. To some extent only if you walked in a care givers shoes can you do that and each case is individual. It is a blessing Alz has received the exposure it has this year and the significant new level of awareness. Congress that provides funding most certainly has become a beleiver to a greater degree. I felt it provided the oppportunity to open new doors and allowed far more to realize what we have dealt with. The fact is my own extended family was never aware of how this effected my life and my direct families life and I am sure they became more aware. Was it to the extent needed no. Yes they donated at the time of my moters funeral but I doubt support continued after that. None contributed to my flame on the Mall. But getting one convicted of a cause takes time. Thanks HBO you at least gave us a large stage to broadcast from

I was glad to see the HBO special, although there were a lot of questions I had during and afterward. Where was the anger? I saw some sadness and a lot of angels who never seemed to feel anger, but I know that just is not the case. I get angry so often, at my siblings for not "getting it", at my mother for having the disease, at the disease itself, at God. But with the special out there (HBO.com has it) at least there is a place to point people who are clueless to inform them. A starting point. And I watched with interest and hope the medical progress being made.

Hi Kat, where was the anger, indeed? That's been a huge and challenging problem for me. I've talked with bunches of people, and they all say the same thing: That HBO was correct in keeping away from the scary stuff. That if civilians saw what the dark side looked like, they'd turn their heads and pretend we don't exist.

Kat, I think they're right. There's such a lack of basic information about dementia out there, especially the earlier stages, that I now celebrate HBO for giving it a shot.

I think the next step in medical progress will be drugs that are better at slowing down what's happening to us. And soon, please, a drug that stops our progression. I've lost a lot, but I can still enjoy some things. The way I feel now is tolerable.