Dazed--Exactly like Steve--his Dad was close to 20 yrs younger than he when it started. He sometimes comments about all the pills he takes, but I tell him they are making him better. If I were in his shoes, that's what I would want. I wish there was some way that I, too, could see the situation for something other than what it is! Ditto on the crying when reading here, but crying is supposed to be a "good thing".
I have seen bits of the Alzheimer's Project on Larry King last night and tonight, Mario Gomez on Entertainment Tonight had Maria as a guest. He said his Grandmother had the disease. I will watch it, because I learned so much by simply visiitng Memory Care Centers. I need to know as much about the enemy as is allowed. Isn't that what our battle leaders stress?
I have that kind of inquisitive nature. I read book after book on the disease and caregiving. I want to stay as much on top of this as I can. It helps me know when I've done all I can. It helps me know if there is something else I can do. I DO NOT put stock in any group leader or speaker who has not walked this walk. They haven't got a CLUE...as all of you will agree!
I used to hear "Those who can, do! Those who can't, teach!" Somehow I want to associate that quip with informational videos and seminars. I am convinced the Alzheimer's Project is a work by those who have DONE IT. Interesting that it begins on Mother's Day!
Isn't Maria a lovely woman. One can see her soul through her eyes, or so it seems.
For those of you with the Dish Network go to channel 102.On that channel you will find the info you need.This will be on 300 and 302 Sun. Mon, and Tues. night FREE! Every month Dish gives us a couple free channels in hopes we'll upgrade.Hope this helps.
I am undecided if I will watch this documentary. I am starring in my own movie about AD, and I already know the ending...seems pointless to watch a rerun or remake with different characters.....
phranque, I tend to agree with you. I'm going to watch because I've asked so many of my friends and family to watch, that I want to be able to speak to them about it and get their impressions. Those who do not live with this day to day, have not idea what it is like. This will give them an idea, and I want to be able to talk with them about it.
Hello All! I watched 90% ( not the science part yet) of the mini-series today. If you have HBO with "On Demand", you can access all of it now. Yup..tears flowed. Most in depth series I have seen on AD and those that work with AD, either by caregiving, Drs, hospice etc.
I will go back and re-watch the one titled Caregivers, as it was the first one I watched. After first viewing, I am left with their inability to truely get across how freakin' hard it is to care day in and day out for a loved one that is a shell of the person we once loved. But maybe it was me, unable to settle down to watch it, or absorb at one showing. Lot's of "gotta take care of yourself" stuff, stuff we all know intellectually, but difficult to truely implement.
Anyway...very interesting and worth each of our time, if you are so inclined. If not, I sure understand that, too. BTW, this was on while DH was wandering in and out from bedroom to TV and back. He showed little interest in the subject matter. He was dx with dementia long after he was able to comprehend the dx. (denial on my end lasted a good few years!)
Ann, thanks so much. I just went to 102 and sure enough the programs are listed and are free. Another example of how helpful this site is; without it and Ann's input I wouldn't have known! I must confess I don't watch TV much and have never checked to see what's being shown free at any one time. I'll probably record them.
We have DirecTV but not HBO. I found all the episodes of the special listed for Channel 101, which is free, so it looks like most of the providers are on the bandwagon. I have it set up to record, then I can decide what and when I want to watch. Not sure I'm "up" for all of it.
Susanhere, DirecTV not only put it on Channel 101, their free channel for all kinds of specials, they have unlocked all of the HBO channels for the entire weekend. DirecTV is one of the providers that has gone out of its way to do what HBO wanted done with this set of programs.
Information on Comcast's site says that HBO will be available to all Comcast subscribers today through Wednesday. I just tried our local HBO channel and couldn't get a signal, so I called Comcast. The representative I talked to said that you can't get HBO without a cable box. We don't have a cable box, because we don't get any premium channels. Nowhere on-line did it say anything about needing a cable box to get free HBO for the program. The representative said, "Maybe we should have had a disclaimer on-line." Ya think? I am furious. I told him that tomorrow I was changing to another service provider, and I intend to follow through. I was already angry with them because they recently took off the PBS channel we have always watched and supported and replaced it with another PBS channel. Now I am beyond angry.
I am watching the hbo ad project on my computer.....it is free streaming and works well if you have a good internet connection...thanks to guitar guy for the link above!!!!!!!!!!!!!!!!!
I'll probably also watch in on my computer, but I would rather see it on a larger screen. I'm going to explore hooking the computer up to the television.
I just put the link to the HBO streaming video of the documentary on the home page - www.thealzheimerspouse.com - it is right below the link to the DVD in the middle of the page. I will watch it on my computer - I absolutely do not want Sid to watch the first one. It is a brutal portrayl of AD from beginning to end. Wouldn't you know it - as of last night, he REMEMBERED that the program is on tonight. Let's hope he forgets.
I watched The Memory Loss Tapes online--very well done. Interesting that none of the people profiled showed any of the most difficult behaviors--rage/aggression. I wonder if that will be touched on in the later segments. I liked how they showed pictures of the people in their younger days and gave some biographical information--it made a poignant contrast with the present. Did anyone catch the age of the computer guy? I was doing something else and missed it.
I just watched the 1st show. You will cry. Both my daugher and I watched it while DH was wondering about. I didn't get to see it end-to-end but will do that later. Make sure to have kleenex on hand!
I did notice that they didn't show any of the more difficult behaviors. I wonder if it had to do with maintaining dignity for the patients. Maybe they will talk about it later without actually showing it. The program was very moving.
the little guy in the bed that had hospice at the end was so precious. it was heartwrenching to watch the end scene under hospice knowing all too well so many of us will be there at some point. just awful. divvi
the lady with the friend in the mirror was sad, and I was touched by the way the family reacted to the little "love story" between the 2 patients. reminded me of the situation with Sandra Day OConnor's husband.
I found this episode difficult and I didn't really want to remember the earlier days. I missed the last segment about the hospice patient. I also felt that it was not really an accurate portrayal of ad. Perhaps this was done intentionally. Mabe they just wanted to slowly introduce this disease to the uneducated public without totally horrifying them. My dh never spoke as much as these people did in the later stages. The brain is such a complicated mass.
This first installment, I think gives the uninformed a lot of clues that AD is way more than just memory loss and that it is terminal. That right there is a huge step in educating people. I think, if they'd covered the rage and aggression issue this soon into the Documentary it would have destroyed what they're trying to accomplish.
We were clueless when we started this road, but were motivated to research and learn because we had to know as much as we could. This Documentary is going out to the general public, who most commonly don't have that spur driving them to learn about AD. One Documentary is not going to be able to inform the audience of everything. Just from this first bit, I am optimistic that it will give the audience a lot more understanding of the Alz realioty--not totl understanding, just a lot more than now.
Yes, things the computer guy said did remind me of my husband. However, here's a big difference. Prior to dx, over the years Steve always told me and close friends that if he ended up with AD like his Dad that he would end his life. The man in the film certainly alluded to that, spoke about his remains, etc. But once Steve received the diagnosis, there has been no more talk of suicide. Yesterday was a hard day for me--Mother's Day--missing my Mom. When I got weepy about who would take care of me when I'm old, he tried to comfort me and said he'd always be here to take care of me. Even when I said that "men die before women" and that he's 4 yrs older than me, he insisted he wouldn't go first. Clearly the disease has blocked his understanding of the reality of it, and for that I'm glad.
The daughter whose Dad had a ladyfriend at the facility is Mary Ellen Geist--she wrote a book about her Dad's AD called "Measure of the Heart". She quit her job as a news anchor to move home and help her Mom take care of her Dad. If you haven't read it, it's a good book.
Carosi--I agree with what you said above. I thought the woman whose daughter was taking care of her out in the country came the closest to showing the difficulty of the day to day behaviors of an advanced AD patient. Her Mom didn't communicate well verbally, they showed the wandering, and the problem when she put a pebble in her mouth. Did anyone notice how they made a point of showing how the daughter chastized herself afterwards? I thought the wife at the end also was too hard on herself--I think she called herself selfish (?) when she clearly was devoted to her husband and very selfless. I guess this is something caregivers tend to do.
I watched and was particularly moved by the end stage gentlemen. My husband didn't speak or communicate for the last four years of his life and was totally bedridden that whole time but the last three weeks of his life were exactly like what was portrayed....except my husband was at home with me.....the sunken eyes, the mouth in the other worldly mask-like configuration....ghastly.....
My only fear is that only people who will watch the series are the people who are already involved with the disease. I can't imagine people flipping through channels stopping to watch....I hope the viewer numbers prove me wrong.
My wife and I both watched. I was the one crying. She was comforting me. It showed that they were all different yet, all the same. I do not want to watch that again. I hope that many did watch it, to get some understanding.
Moorsb, I also noticed more than anything else how they were all so different but yet the same disease. The reason they say "when you have seen one Alzheimer patient you have seen one." The years the disease lasts from patient to patient, the happy ones,the fearful ones, the wander, they are all so different and what happens with one does not always happen with the others. I also noticed how most of the patients were still talking late into the disease, and how my own husband has not talked for over a year now. How so many of them are still walking unassisted and then others in the wheel chairs, so this tells me that not all will be unable to walk for years, at least that is what I am hoping for. The Little man with the girlfriend had the disease for 14 years already, that shows us all how long this can really last.
It is really in so many ways a help just watching and knowing that so many are caregivers with this disease but yet not many of them still had the patient at home, did you notice that?
As others have mentioned-I doubt many outside the disease would devote so many hours watching a program about a disease that they know little about. I doubt that I would-especially as I don't have HBO. I am glad that I was able to watch the first showing with family and even if I can watch the rest alone at home I will go to a neighbor who has HBO so I won't be alone. I will bring my own Kleenex
I decided not to watch, which now I am glad I didn't. I have experienced my husband's maternal grandmother & mother suffer from this dreadful disease from beginning to end. And now my husband much younger than they were, is going through the same hell. I am sure as some have mentioned the only people who actually watched were the ones with family members with this disease.
We did not get home until 10 minutes to 9 last night, and would you believe it - Sid said - Isn't that AD program on tonight? I was so hoping he would forget, like he forgets everything else. I told him that it was, but I didn't think he would want to watch it. I was honest - I told him it shows AD from beginning to end, and I didn't see any need for him to watch it. Then I remembered that I'm not supposed to treat him like a child, and I'm supposed to let him make his own decisions on things that he can (according to my psychologist and social workers), so I said - "Well, it's up to you. Do you want to watch it?" Thankfully, he said no. But I could tell he was angry with me. I am sure he was thinking -"Oh, I'll just go along and do what she says just like an obedient dog." That's his favorite phrase now - he feels that all of his free will and decision making has been taken from him. Sometime this week, when I get a couple of free hours, I will watch it online. As I said, the 20 minute clip that Maria Shriver showed us at the DC Forum was chilling - enough for me to know Sid didn't need to watch it.
I decided to see if I had HBO on DirecTV yesterday and I did, though I don't pay for it. So, at least for me, it seems it was provided free and I never contacted them to ask. It was very sad to watch. I agree with Sandi about the man dying reminded me so much of how Hank looked at the end. The Hospice nurse tried to close his mouth, but it wouldn't stay, so why bother. I also found myself very sensitive to those who just couldn't seem to get a grip on the memory loss - like the son who kept asking his Mom if she remembered the dog, or whatever. I HOPE I never have to deal with Alzheimer's again, but watching this special made me appreciate myself and that I loved and cared for my spouse until the end - he was lucky to have me.
I thought The Alzheimer's Project was beautifully presented, moved along quickly, and let the people tell the story without a script. I believe that those of us who live with the disease, - in different stages every one... - will take away different impressions. Those who do NOT have to live with the disease, or do not know anyone with the disease, might focus on totally different impressions. They'd laugh at the woman driver who failed her driving test..(they'd say, "Oh Nooooooooo!...ha ha ha).
My favorite segment, was the gentleman who sang with his old vocal group, "The Grunions".. He was the one who had a special friend at the Nursing Home. He was totally confused, repeatedly asked the same questions, whistled all the time. He was taken to a performance of his old singing group and they had him come up and sing with them. He led the singing, solo, and remembered every word, had a beautiful singing voice, and it was amazing! I will rewind and watch that segment again.
My DH watched about half of it. I commented, "Those are the same questions the doctor asked you, remember?" He said,"What?? No, I haven't seen a doctor." Later, I'd comment about something else, and he didn't "get it". He watched, but it didn't mean a thing to him". When the man was singing, I applauded..and said, "He's great!.." DH asked, "Who is great?" I would suppose most of our DH's would watch it as a fictional movie and not "get it". He did NOT relate to it whatsoever.
Set your fears aside. For the most part, TV is fiction. My husband thought this program was just a movie, got bored and went to bed. I cannot imagine a caregiver NOT wanting to watch it. But, that's because I am one who wants to learn all I can about the different phases of the disease so I can be a better counselor and teacher when the opportunity arises.
i also watched it with DH half asleep, i doubt he saw any of it. i was questioning some of the activities they were using in the AD facility. the loud singing and noises and the aide asking somewhat difficult questions to 'stimulate' the minds. i found it stressful to see all the commotion and some crying while its going on. we know loud noises make AD victims ansy and while maybe some can answer questions about baseball i thought many were way beyond that activity. plus the only aide that 'got it' with the poor lady in the mirror seeing snakes on her wheelchair FINALLY changed wheelchairs for her- my dad passed with his mouth open like in the hospice sequence. we could not close it either-i agree unless you have someone close at hand sufferin gthe disease i doubt normal folks would want to stress themselves over watching it. i was also taken back that there was only one man in early 60's. we know thats not the case, there is much EOAD out there. i hope that comes to light. divvi
I watched online both the segment on the people with AD and the caregiver segment. Both were wrenching but felt they were well done. Agree they did not show much of the worst behaviors. Thanks to Joan for making it easy to find and view; we don't subscribe to HBO. Thanks also to all of you for being here each day -- I find I am checking in on you more and more as this FTD business goes along. Tom took a tumble the other day and has been sore ever since. Seems to get a little better each day -- his appetite is still wonderful so it's easy to make him happy with meals.
My husband knows nothing about it; I haven't talked about it to him. BUt I watched the first segment streaming last night. Very moving, but very worth watching. The constant noises! The constant fiddling with a gate to try to get out! the flashes of memory.l was actually rather heartened by the sweet little man at the end: he was still talking in sentences and responding to his wife (of course he couldn't name her, but that's ok) four weeks before he died! I agree though that it was sugar coated in one respect: no showing aggression. And no showing anyone curled up in a fetal position completely out of it. THAT would have been disturbing!
I watched the first part online - So glad Sid didn't see it. The last segment just about killed me, and it reinforced my decision to live one day at a time. I just cannot keep looking into the future, knowing that is what I will face. I'll deal with it when I have to.
Then I went into the den to watch tonight's segment with Sid. He remembered that it was on - geez, why can't he remember other things? Anyway, he was disturbed by the first part with the grandchildren and grandparents, but he was fascinated with the science part. He is a visual learner, and that is still kind of intact. He understands things if he sees pictures of them, and he remembers visuals much more than verbal information. And he always wants to know if there will be new treatments for him. So it was beneficial for him to watch, and he will watch the 2nd half tomorrow night. I have no idea how much he will remember of what he saw.
I do wish they had show rage, aggression, and both physical and verbal abuse. It's important for people to know.
Reminder - the link to all the streaming broadcasts is on the home page of my website - www.thealzheimerspouse.com
I can just imagine how the verbal abuse would sound.....bleep......bleep bleep bleep bleep...probably could not find an editor who could insert all the bleeps///
I started with the first part then finished just as tonights came on. Being on the west coast I was able to watch it on HBO-E which meant earlier. I was reminded of my mom when the lady was carrying her doll - my mom did that. Also the woman that had the yard fenced in. My mom would make those same sounds. I wish though they had shown someone that just walked around being a blank slate. The woman in the fenced yard was close, but she could still have a type of communication. But, the show is a good start. The portion with the grandkids was sad - know what that is like. I sent the link to my son hoping he would watch - but hockey came first. Due to his grandfather living 3200 miles away, he never saw him after he got sick.
The science portion was good. I am glad I have it recorded so I can watch it again. I am excited about what part 2 will show.
My son watched the program with me and had very little to say afterward. He came in today and was energized with the program and said he told everyone at work about it - He said he had NO IDEA it got that bad. He will stay here until Saturday and then leave on company business to Xu'an, China for the next month. He has said he is going to ask his counterparts in China about AD there. It's like suddenly a fire was lit beneath him. So The Alzheimer Project recruited one voice. Isn't that the point here? To disclose the factsand dispell the myths. Recruit newbies and hopefully open their eyes to the challenge caregivers, in particular, face.
I had quite a few interruptions during tonight's airings, and will need to go back and watch it later. Any comments about tonight as compared to last night?
Thought tonights episode was better for me. The first segment about the grandkids was so emotional. I have a 24 year old daughter and she is having a hard time with this disease. It is so painful to watch. I was fascinated by the science part but I think the special with David Hyde Pierce a while back was better. I guess I just expect to hear so much. I think they are really going easy on the public. If they got non alz affected individuals to see it, it is a success.
In the part about the children and grandparents, the one Grandmother appeared to order the granddaughter to leave. Also,Marie in her inputs mentioned anger, and implied outburst, possibly more.
As I said before, they can only cover so much in a Documentary, and including coverage of aggression and/or rage in this first major effort to Educate the public, could likely work against the goal of educating about Alz. The general public is not ready for that.
I have just watched the first tape and I'm am feeling very sad. My children spent a lot of happy hours watching the Cousin Cliff Show on TV. It was like watching an old friend die. I hate this terrible desease.
I am with you Ann but maybe it was not done to educate us "professors". I guess public awareness is the goal. I took my brother to see dh in the hospital yesterday. On the way home, he said to me that no one understands this disease unless it is personal. I think that is true of many diseases. I told him that I thought this is how our brain works. If we knew the actual reality of many diseases and how devastating they are to the patient and family, we probably could not function well. He is profoundly upset about my dh. He never had a brother and considered dh as his. He always looked up to dh as a role model and I see the devastation in his eyes every time we visit. This website is the best educator!!
I sent out the link to people in my address book. I got one reply back of a thank you. She had emailed me saying they thought her mom (probably in late 80s) had alzheimer based on my friend's sister who worked in NH. After watching the first one online last night she is going to push to have her mom tested and find out.
ya know, Charlotte, sometimes maybe knowing isn't all that it's cracked up to be. People in their late eighties - to go through all those tests,etc - my husband was 81 when he first did, and after that time it's been pretty minimal (he's now going on 85) ... if they're already in a facility, well, as one person who works in one told me, just about everybody here has some dementia...
I watched the one with the families and I enjoyed it. I watched it on my computer. I am going to check more out tonight. You were right, most of them were in a NH and doesn't show as much caregiver assistance as we have to contend with. I enjoyed the man singing. Starling, I think you would like that one.
I couldn't see a lot of my DH in any of them but I can tell you right now if he was placed and could walk, he would have a girlfriend in a minute. I could understand that and evidently he did not have a wife so it was ok but still if it was your dad, it would be hard to watch.