For those new to this site, I'm almost 54, diagnosed about 2 years ago. The closest diagnosis to my symptoms would be Alzheimer's, Frontal Lobe Variant. It's like regular, but with an occasional attack of demon possession, and a lot of trouble with anything needing organization.

Now, the program: Watching tonight on my computer, I figured the first part, introducing us to people with varying levels of dementia, would make me sad. I didn't expect to outright cry! I don't do that. But a few of those stories . . . and the death. Wow.

And great job on the scientific part. It went way more into the science than I thought they would, and they made it understandable. Well, most of it was understandable to me, I'll watch it again & work on it.

I'm somewhere into the next section of the series, but just can't focus anymore tonight.

I plan on talking a lot about this project. Right now, who wants to talk about their first impressions?

My first impressions - and these may change as I watch it again (and again) and my emotions are not so present.

I watched in this order. Caregivers, Grandpa, Tapes, Science. I haven't gotten into all the little extras.

Bravo to HBO and all involved in making this. Excellent job. Mom still watches TV and understands things to a certain extent, but we will not be letting her watch these. That opinion may change as I view again. I pray that our extended family and friends do, I have sent many notices and links.

However, having said that (I feel like Simon Cowell now!) ....

After viewing all, I felt the Caregiver section lacked. Lacked what?? I can't really say. Were my expectations to high?? I am tempted to go back and watch again so I don't misspeak. But this is a first impression.... And most people will probably only watch this once, especially if they feel discomfort by it.

The segment focused a lot on the person with AD. But then again to get the caregivers side of the story you need to know the patient and how they relate to the caregiver, their personal story. I related most to Nacho and his son Mike. Perhaps because it was a parent/child situation. Mike talked about his own personal health, financial cost, etc.

I don't feel the caregiver segment gave a true reality of the devastating wake this disease makes on the caregivers, family and even society. But if it did, it could quite possibly be to harsh a reality for the general population in this format??

Taking all segments as a whole, viewers can get tuned into what caregivers go through on a daily basis via the other stories. "The Fence", was one of the Memory Tapes I related to as a caregiver very well. Also the one with the man who sang. Woody, was it?? How he has the moments of clarity and can sing like nothing is wrong, when that is far from the reality of his life.

I will have more to add as time goes by. Maybe I shouldn't have watched them all over the course of a day. WAY to much to digest and think about.

Again I say BRAVO to HBO and all involved. Standing Ovation!!

I watched the first session and then the one on caregivers on the Internet. Very, very sad. But what I saw were calm and serene persons with AD. No one came close to acting the way my husband does when angry or when he's confused. In summation....I didn't see anyone with AD as I know it.

Never the less, I am grateful to all involved for airing this documentary on this dreaded disease.

quote:

Originally posted by VAH:
I watched the first session and then the one on caregivers on the Internet. Very, very sad. But what I saw were calm and serene persons with AD. No one came close to acting the way my husband does when angry or when he's confused. In summation....I didn't see anyone with AD as I know it.

Never the less, I am grateful to all involved for airing this documentary on this dreaded disease.

My first impression was if I was not dealing with Alzheimer's in my life, I think I would have turned it off. I think I would have went into an avoidance and denial of this disease and would not want to know about it.

I cried from start to finish. I was impressed at the job done by HBO on the first episode, which is all I have watched so far.

Found it interesting though that EOAD was not mentioned, especially on the gentlman who was 63 and now I can't remember how long ago he was diagnosed.

I was quite suprised at the last story as well and even showing him til the end.

VAH, I wonder about the calm nature of those filmed, too. My brain started the anger thing as one of my early symptoms, and has continued to get worse. Except for medication, I've no doubt I'd be put away somewhere by now, though I don't know if it would be a nursing home, hospital, or prison.

Even medicated, there's still the occasional sundowning kind of thing, where I get mean, anyway.

Alice, was your first post a system test? Please come back and talk to me, ok?

Kathy, the people in the various stages of Alzheimer's evoked much pain in me. Being a part of the same club, I believe I either knew what they were feeling, or could make a good, frightened guess.

Of course I'm disappointed they didn't have somebody just like me on, or at least a non-familial AD guy who started having noticeable symptoms around 51 y.o. But they had to draw the line somewhere.

For those who are still just reading what others are saying, please, jump in and share your thoughts, too.

Hi to All the HBO viewers,
My name is Lisa. I was diagnosed @ 53 with Early Onset Alzheimer's disease (Not the familiar type). Thank you for watching and caring. HBO did a good job of conveying the difficulties of this terrible disease but not of all the drama! It all looked so clean! AD or EOAD is not always that clean. I think they didn't want to scare people! Alzheimer's is a horrible monster that jobs people of dignity and self. It, also, runs caregivers into the ground both physically, emotionally and financially! Oh well, that was three things!
It showed lots of emotion and sadness. I cried during many parts. I think Maria Shriver did a great job getting her points across. It was all just a little too clean for me. Ahhh, what do I know I have EOAD and so does my Mom. Well, she doesn't have EOAD, she has AD. She is declining rapidly which makes me very sad and angry.
I think the Science part was very interesting and informative!

Please, let me know how YOU feel!

I watched The Memory Tapes on hbo.com/alzheimers this evening. Although the people's stories held my interest, I don't think the stories would be interesting to anyone not dealing with AD because the stories were not put into context. I would like to have seen some mention of which stage each person was in.

I liked seeing the segment of the lady taking the written and practical driving tests. Her driving lapses really hit you in the face. Even though she was upset, she could not deny her disability in driving.

Iris L.

I too watched The Memory Tapes tonight. I agree that people unaffected by this would not watch it. I know that I wouldn't have watched it if my mother didn't have Alzheimers.

I was exposed to convalescent homes since I was a child. I have always remembered hearing other residents yelling "I'm dying". Years later when I was a teen and doing volunteer work, they wanted to send me to a nursing home and I said "No way!"

But the man that could sing, and lived in the Sunrise Home, was in a room with people yelling "Help me!""I'm hurting" etc... And he and others were not bothered by it.

Also I found it weird how they filmed this and the Alzheimer's patient didn't seem to find it odd or focus on the camera and the camera person. Like the singing man, he kept walking into rooms looking for people....but never acknowledged the camera person. Weird?

I speak now as an independent person outside the Peer Volunteer status.

There were some very poignant presentations within the first episode of the HBO Special and my heart ached for the patients and families. Such dear people experiencing deep losses. I too shed tears.

I have watched only the first episode, and though touched, I agree with the others who mentioned that it was a bit, "too clean." There just wasn't an accurate portrayal of what the majority of the caregivers/patient's daily lives are like when the going becomes severe and behaviors and loss of cognition and function become overwhelming in so many ways. This takes on increased impact when there are not sufficient assets to gain assistance, care, or even to pay for prescriptions.

For example, rather like the significant problems with our loved ones and care issues that we share with one another on a daily basis on the Caregiver's Forum. Somehow, though well filmed and well done, I felt a sense of superficiality in that regard. It did not sufficiently reach the beginning teaching level necessary to not only teach those without knowledge/experience, but also to extinguish preconceived stereotypes.

Almost everything I have ever seen regarding dementia from TV specials to movies are sanitized. This disease and it's many impact facets is anything BUT sanitized. And for those without adequate funds to meet the significant challenges, it can be beyond misery.

This is a disease that can strike every class; those who live within an extremely privileged lifestyle and have unlimited assets to meet all needs, as well as those who are middle class with limited assets which quickly disappear, and of those who are the poor with little to no assets with which to provide care and eke out a bare existence while teetering on the brink. There are also those who have lost all and fallen off the brink.

I would like to see all classes in our society being addressed in such a presentation; how else are we going to garner the support needed to meet the demands of this dread disease?

As I have said before, "We race for the cure; when are we going to begin to race for the care?" Both are extremely important. The impact of unavailable care is in the here and now. Families and afflicted loved ones are suffering.

NOTE: I was also a bit disappointed that they mentioned only the one dementia; Alzheimer's Disease. I so wish that this would begin to ALWAYS be addressed as, "Alzheimer's Disease AND Related Dementias."

A significant number of loved ones have a different dementia than Alzheimer's Disease. These other dementias have many of the same issues, problems and similar symptoms, but they get lost in the ether. Many dementias are "mixed." If we are going to educate the public at large, this definitely needs to be part of it. "Related Dementias" should not be relegated to the background.

Please don't misunderstand, the Alz's Assn. does a magnificent job in so many ways, and the special IS special, it's just that we continue to have a way to go.

Since this special has other episodes, I can only hope that people without an Alzheimer's loved one will continue to watch. They may not as the initial episode though quite touching, was bland and without much "new".

Again, it was filmed quite nicely and I appreciated it, and this is at least something to begin to build upon. Perhaps the subsequent evenings will garner increased education of the disease impact and display reality with true grit.

With deep respect and appreciation,

Johanna C., RN, MHA, MPA
- Daughter of Mother, FrontoTemporal Dementia
- Daughter of Step-Father, Alzheimer's Disease
- Heartfelt Supporter of the Alzheimer's Association, Online Community

I have only seen about the first half of the first episode so far, plus I have read through the responses above.

I agree with the statements that there seemed to be a rather "matter of factness" about a lot of the reactions of the people in the program. I'll need to see the rest of it before I judge thoough. Not sure If I'm going to wnat to watch the death scene since I already did that with my dad.

I would disagree that "most people would turn it off" though only because I think that more and more people have been exposed to ALZ in some way or another and since it is genetic they might want to know more - especially about the science parts (I know I am). I could be wrong though....

I watched the first segment The Alzheimer’s Project. I didn't like a lot of what I saw. I was also comforted by what I saw and can expect to experience myself.

Was it too clean? I don't know. I do know I do not want to dwell on the tragedy and the mess that my loved ones and me face in the progress of my disease. I want to stay as peaceful about it yet remain in the real world as much as possible. Does portraying it in the noir of its possibility do anything more for our family, our friends and others trying to understand our disease? I do not know.

I liked the presentation on the lady who tested and lost her right to drive. Right On! Been there done that! I felt exactly the same way when it happened! That was when my freedom left the room.

I loved the first presentation of an 87 year old in Early Stage. She was endearing, humorous, quite functional as so many of us in early stage remain. She perfectly introduced AD to the public. She was not the USUAL STEREOTYPE of AD.

The last segment tore my heart out. I hope I can go the same way. What a measure of love he left on! His loving wife, who wanted him to stay, to keep taking the medication to prolong him, when asked why prolong him by the doctor, decided, as much as she wanted him present in her world it was not fair to him nor consistent with his wish to not be kept going with artificial means. What a wonderful woman, wonderful caretaker, wonderful expression of the selflessness of love. I loved her right back! I cried tears of unadulterated love on his tender good by.

The fellow who bought his final brain box, an urn for ashes, talked my feeling about it all. Why hang around when the brain has exited? My JewBu outlook prevents me making these arrangements. But if the brain is gone is there cause for the rest of the body to remain?

The other segments were harder, but were not nearly as bad as I expected. I know there are worse conditions that can happen. I simply keep trying to accept my AD, keep a serene outlook trying to make the best of it and hope this will deliver a more accepting attitude into my dotage when the storm hits.

I have to agree with the rest of you on how clean the first episode was. I was emailing a fellow member back and forth last night and we were discussin how they did not touch on the rage or violent issue, which in my humble opinion is so much a part of this disease.

Interestingly enough I just spoke with a friend this morning about it who's dad has AD and told her she really needs to see this and I could tell as she hurried along in the conversation she had no interest. Again my feeling on that is a bit of avoidance and denial. Not that I am judging but I thought about the show all night and thought, I really don't kknow if I would have watched it not being involved in it.

When I first went to the website before the show, it flashed up saying "it is the second most feared diseased" that even made me cry.

I actually found some comfort in watching each of the stories, it just reinforced to me how many people out there are dealing with this. (which I already knew from being a member here).

I am a caregiver, so watching the individuals who had the disease and talk about it (when they could) really helped me. I found the one man who was 63 speak of the fact that he could feel pieces of his brain being sliced away so interesting. My dad never came to terms with this disease and never accepted that he had it. We have never even discussed it with him as he would have no part in any discussion like that. I often come to read on the forums under "I have Alzeimer's" as I just want to see what all of you deal with and feel or not feel. I know how I feel as a caregiver and reading all the storied under the I have Alzheimer's forum gives me so much more of an understanding of my dad and helps me so much.

As I said before I believe so many people won't watch out of fear and denial and maybe that is why they left so much out,hoping people will come and learn. The 7 stories were heart wrenching enough for me evening knowing there are so many other aspects of this disease. But I still believe they did a good job on giving, well I guess I would say and "overview" of people with the disease. I am looking forward to the scientific episode that airs tomorrow.

Somewhat disappointing. Definitely provoked some emotions in me, but it did not truly show this disease's ugly side. Everyone with the disease seemed to grudgingly accept it, nobody had to get guardianship over their LO, no siblings fighting, everyone had support, nobody except perhaps the people who lived out in the country (the place with the fence) seemed to have financial problems or have to fight to get disability or SSI.

What caregiver looks as put together as most of the caregivers on The Memory Tapes? Do they get out of bed looking like that or what? None of the caregivers work, either. Come to my house, where I have to do everything I do for mom AND log on promptly at 4 p.m. and log off at midnight because if I don't we don't eat. It doesn't matter if she hasn't slept more than 2 hours in the past 48 (meaning me also).

Winner of the nursing home I never want to be in category is the Sunrise chain, which from this episode looks like a beautiful place with a bunch of people sitting on furniture with very little stimulation.

Joe P was a member of DASNI for a long time we chated every day with each other til he got so bad.........

I watched the Caregivers video and will go back and watch them all.

Disappointed. The persons with AD appeared calm, gentle, receptive to care, and peaceful in bed in the late stage. Even the gentlemen who wandered the house at night was relatively calm about it and did not appear to be agitated or destructive.

It didn't seem like a horrible way to go. Lost memories but otherwise no apparent discomfort.

Judy, I thought the same thing about how well put together the caregivers and their environment looked. I have the mirrors covered. Not for my mom, but for me.

I am grateful this project was understaken and the publicity it received. Look forward to watching it in its entirety.

Hello, my name is Tom and I have been diagnosed with Early on-set dementia, most likely of the Alzhiemer's type.

It is important to rememmber that: If you know one person with Alzhiemer's you know one case! We are all different.

I agree with Ttom, even if your loved one has AD one thing I have learned thru these boards is just how different every other person is with this disease which is another frustrating part. Nothing is same, sure some symptoms are but no two Alzheimer's patients are the same.

I know there is so much more they could have showed, but I still think they touched on it enough to make those who have no clue aware to a certain point. I don't think there is enough air time on televison to show EVERY aspect and corner of this disease.

I am one of the participants in the Caregiver segment and it was a true slice of our life. However, I want to emphasize slice. We have many days and moments that are very stressful. We are fortunate that Chuck's fronto temporal lobe is still fairly intact so he isn't violent, mean, inappropriate. One thing that the film accurately portrays is that Chuck seems fairly normal to people who don't know him well. Losing his short term memory is very serious. Chuck lost his job, can't complete tasks well, has balance problems, vision problems etc. which all limit his successful functioning. He doesn't have to be having rages for this to be detrimentally affecting our lives. I was hoping our segment in the film would demonstrate this but I don't know if it did. I am not sure someone can truly understand the impact of even the earliest stages of the disease unless they live day in and day out with the disease.

Chuck's experience is different than some because he was also a caregiver. When he was only 13 his mother came down with AD at the age of 44. He saw most of his aunts and uncles die with EOAD. We are fortunate that his regimen of drugs and supplements appear to be helping with the severity of symptoms at this point. Chuck knows it could be worse and has chosen to face his disease with as much optimism and grace as possible. We are still trying to seize life and live the good parts as best as we can.

Our wish is that everyone who is affected by AD/other dementias speak out and tell their story.

M in Oregon, thanks for joining in, I know I really appreciate it, and I'll bet the house that everyone else appreciates it too.

I have a significant amount of frontal lobe involvement, and the Seroquel to prove it. It's still a problem sometimes. Your Chuck gets to choose his reaction, you say? Is that all the time, most of the time? Does he need something like Seroquel?

Another question, if I may: Are you aware of any plans to do further episodes, e.g. to address some of the dark sides?

I watched the Alzheimer's Project not because I have a family member with the disease, but because I wanted to learn more about AD and related dementias. I can understand the "sanitized" feeling many of you have, but for someone like me whose only experience with AD is writing about medical advances and possible triggers (like the diet/lack of exercise connection one of the researchers touched on), I can tell you that after 15 minutes my only thought was, they've got to find ways to prevent or mediate these diseases. The producers needed to reach and hold on to as wide as audience as possible and I guess that's how they felt they could do it. I feel that the concept of the documentary was really to tell the rest of the world about AD and build momentum for research--everyone needs to be on board so that funding can increase, not just those affected. For the general HBO viewer, the scene with the grandma yelling at her young granddaughter, as short a glimpse as it was, told volumes about the rage that you must see and deal with all the time.

I work on a website for caregivers of elderly parents and can appreciate that the caregiver role wasn't delved into deep enough, but I think that too goes back to the primary mission of awareness for the general public. There is almost no way to communicate all that you give to a loved one and the parts of you that can be eaten away in the process.

I would love to hear what kind of information and support would be helpful to you so that I can make sure I provide it on my website.
Thank you for letting me share my thoughts.

quote:

Originally posted by Alan in Colorado:
M in Oregon, thanks for joining in, I know I really appreciate it, and I'll bet the house that everyone else appreciates it too.

I have a significant amount of frontal lobe involvement, and the Seroquel to prove it. It's still a problem sometimes. Your Chuck gets to choose his reaction, you say? Is that all the time, most of the time? Does he need something like Seroquel?

Another question, if I may: Are you aware of any plans to do further episodes, e.g. to address some of the dark sides?

Alan,
Chuck is not able to control his disease progression but he has alot of awareness of his situation. This is not true for all even at this stage. It just depends on what part of the brain is being affected. Chuck cannot control his energy level. He gets very tired some days. What has helped his attitude is becoming involved in research and being an advocate. Chuck has contacted our local paper a number of times for interviews. He has written letters to the editor about AD. He contacted the local university and has spoken to the gerontology class for the last few years. He participates in research. He has volunteered for the Alzheimer organization and has been on the board of another local Alzheimer support org. He has facilitated an AD support group at the local senior center. He has gone to the Alz org policy conference and lobbied his state representatives. He has also testified before the Senate Commitee on Aging. I know everyone is not able to do this and Chuck is not able to be as active as he was even year ago. He can't get on his computer and write like he did even a year ago. It is much more difficult for him to gather his thoughts. However, trying to make a difference for himself and others keeps him going.

Chuck does not need Seroquel at this point. His brother who also has AD and is much further progressed has had to use anti-psychotics. He was having hallucinations. His wife was very proactive with his doctors in finding the right combo of medications to treat him. I know they have had to repeatedly tweak his medication.

At this point, I do not know if HBO will have a another series. I would think if there is a large public interest in this series that there would be more, if not by HBO then by someone else. HBO has their own blog on HBO.com about the series. You may want to post comments there. I know that frontotemporal lobe dementia is rarer than AD, typically strikes at a younger age, and the initial progression and symptoms are different than AD. It would be beneficial to have additional episodes that address other dementias to create more awareness in the medical community and general public so people are diagnosed properly.

Dear Julie: It is terrific that you are involved in supporting caregivers of the elderly. Such support is greatly needed and can add much to the quality of the lives of those you touch.

If you wish to know what sort of issues that caregivers need assistance with, I recommend going to the, "Caregiver's Forum", here on this Online Community.

There you will see the individual threads written by caregivers regarding their issues and the responses to them.

This is certainly a growing area of need which will continue to grow as the baby boomers age.

Thank you for writing and thank you for your efforts in supporting those who are caregivers.

Johanna C.
Peer Volunteer

Dear M: I have yet to watch the episode with you and Chuck, but look forward to doing so.

You have undoubtedly done a great service by opening your lives a bit so that education to AD will be advanced. Thank you for that.

I sincerely hope that all continues to go reasonably well with you and Chuck and do also invite you to become a member of the Caregiver's Forum if you wish to do so.

The Caregiver's Forum is a marvelous group of people and the support there is tremendous.

Again, thank you for your part in the HBO Special,

Johanna C.
Peer Volunteer

Dear M,

Thank you so much for all the help you and Chuck are giving to not only to the people with Alzheimer's disease but, also, related dementias.

How brave you both are to allow us into your personal life!

Please, thank Chuck as well. He is a real trooper!

I am a person with EOAD and a Caregiver to a Mom with AD.

Again, my deepest thanks,

Dear M
It is great to see you on these boards, I myself have not watched the rest of the series yet. I think Im still getting over the first episode, but will watch. I just think it is great you came over to these boards.

Your also right in saying there is no way to hit every aspect, that can only happen if the camera's were there 24/7 for quite a length of time and it would have to be a long time. Bless you for taking part in the series.

I watched the rest of the segments On Demand last night.

The science segment was fascinating, I found myself wanting to push the "fast forward" button so that science and research could move at warp speed. Soon, I hope, soon.

The caregiver segment was a just a bit more enlightening than the first installment was. I think that the series reached it's probable goal at being a light, generalized overview for the public at large. Evidently this series was not intended to address the more difficult aspects of deeper ongoing care issues, lack of ability to obtain necessary services and lack of financies, care coverage and lack of support that cause so much dreadful difficulty and profound grief for so many.

Though folks through their reading learn that FrontoTemporal Dementia happens at a young age, the Association for FrontoTemporal Dementia does present that the onset can occur up into the 80th year. This is what happened with my mother. There are different aspects of FTD. My mother has a non-Pick's variety.

Thank goodness that thus far, into Stage 6, my step-father's Alzheimer's Disease has been a much easier course. I could not imagine having poor step-dad having the horrendous course my mother's disease has had.

I strongly feel that the next presentations, whoever should take it on, really needs to address this as, "Alzheimer's Disease and Related Dementias." There are many.

According to one of the very skilled LCSW's at a local Alzheimer Association chapter, incorrect diagnoses are quite common. Many "related dementias" are incorrectly diagnosed as Alhzheimer's Disease. What a sad thing. Treatments can be very different depending upon the type of dementia and some meds are contraindicated in certain dementias.

The next series could also take the opportunity to explore the more difficult aspects of obtaining appropriate medical care, supportive care and alternative living care and the true ongoing impact upon families and the caregivers over the long haul when there are such profound issues; this is quite common.

The exploration of the impact upon family, the lack of financial resources and the dementia patient can be done at a more, "where the rubber hits the road", specific level. Frankly, if the production researchers came to the Caregiver's Forum in this Online Community, they would find a good place to start their thought processes. Initially it can be astonishing and sometimes, over time, it feels sadly overwhelming.

I continue to be deeply touched by the caregivers who strive and strive to move forward under the most difficult of circumstances over many months into years. They are the true heroes of it all.

NOTE: By the way; did many of you notice the Sanchez family particulars? The daughter who appeared in the film is a member of the United States Congress, and I believe her sister is also. These positions were not mentioned.

quote:

Originally posted by howdy2u:
Somewhat disappointing. Definitely provoked some emotions in me, but it did not truly show this disease's ugly side. Everyone with the disease seemed to grudgingly accept it, nobody had to get guardianship over their LO, no siblings fighting, everyone had support, nobody except perhaps the people who lived out in the country (the place with the fence) seemed to have financial problems or have to fight to get disability or SSI.

What caregiver looks as put together as most of the caregivers on The Memory Tapes? Do they get out of bed looking like that or what? None of the caregivers work, either. Come to my house, where I have to do everything I do for mom AND log on promptly at 4 p.m. and log off at midnight because if I don't we don't eat. It doesn't matter if she hasn't slept more than 2 hours in the past 48 (meaning me also).

Winner of the nursing home I never want to be in category is the Sunrise chain, which from this episode looks like a beautiful place with a bunch of people sitting on furniture with very little stimulation.

Whoa there,
I will have you know that my husband is Joe. I work a 8-5 job Monday through Friday. I do wake up after having a bad night with him and go to work. I took off a couple of days for the filming and they were at our house for 4 days. The weekend was when they started. So yes I understand the if they don't sleep I don't either. I know that Annie works too. It might not be an office job but she has to pay her bills and so do I.

I think people are projecting alot of their own perceptions on the people in the films. Like the wife of Joe, I also took time off for the HBO shooting. I am Chuck's caregiver. HBO was at our home for 3 days. They came at spring break because, at the time, I was working fulltime and going to school part-time for an MBA. Chuck was in the early stage of AD but even so, I was practically going around the clock. Also, we live in a very modest home. Chuck is on disability. I am currently laid off. We are not well heeled and do not have long-term care insurance. So we are in the same boat as many of you. We did not choose the footage that was put in the film and discussed other aspects of the disease with the producers. However, like I said in an earlier post, the slice of life that was shown, is how we are. Accepting the disease does not mean Chuck is resigned to rolling over and dying. That is why we were in the film. That is why Chuck is an advocate. We have experienced tremendous heartache. We don't want our family or other families to keep going through this. Chuck told a story to the producers that he remembers as a child pulling his mom from a culvert where she had crawled. (She died at 50.)Hopefully there will be more in-depth stories that come out of this series as the general public realizes the tremendous toll this disease takes.

I think the last two posts have made the points previously raised about incomplete information. Here we have caregivers with full-time jobs, juggling caregiving and advocacy for their LOs with careers, worrying about finances ... and nary a word about that in the final film. To me, the program did not give you ladies your full due. It made the caregiving look easier than it is, giving a false impression. (See how many people have made false assumptions about your lives just right here on this forum.) Thank you for filling in the blanks.

I suspect part of this skimming over was deliberate, because they did not want to frighten people who had no experience with Alzheimer's and related dementias. But I do worry about the poor frazzled caregiver out there who says, "Gee, I must do something wrong because (my LO is not that accepting and genial, I never have a chance to take a shower much less look so beautiful, I lose my temper all the time, my kids never come help, whatever). I can only hope they come here for support.

Another comment I want to make, is if you have not, you should write to your state representatives. Ask them if they have watched the HBO series and tell them all the rest that has been left out and needs to be said. Inform them you will be watching how they vote on issues regarding Alz funding, health care etc.

To M in Oregon
I appreciate your feedback but want you to know, you don't have to explain anything to me. I saw your segment, even though it was just a slice, and I know it was just a simple slice, you don't have to explain a thing your just doing what the rest of us do, gettin by... I appreciate the fact that you were willing to put your story out there for all of us to see. Thank you.

Kathy, you are perfectly right, from a moral viewpoint. I, however, am totally excited that series members are contributing!!

While it's conceivable that a politician cares about a letter that doesn't have a huge campaign contribution, I know without doubt that HBO and the show participants just did more for those of us with and touched by Alzheimer's Disease, than probably everything else that will happen this year.

So, HBO made a production decision to make most of the participant's lives look ideal, all things considered. That's their right, no argument. And, I also want them to consider doing a follow-up, showing the other side of the spectrum.

Show members, forgive us, we just believed what HBO was showing us.

Seeing is believing?

quote:

Originally posted by Wife of AD patient:

quote:

Originally posted by howdy2u:
Somewhat disappointing. Definitely provoked some emotions in me, but it did not truly show this disease's ugly side. Everyone with the disease seemed to grudgingly accept it, nobody had to get guardianship over their LO, no siblings fighting, everyone had support, nobody except perhaps the people who lived out in the country (the place with the fence) seemed to have financial problems or have to fight to get disability or SSI.

What caregiver looks as put together as most of the caregivers on The Memory Tapes? Do they get out of bed looking like that or what? None of the caregivers work, either. Come to my house, where I have to do everything I do for mom AND log on promptly at 4 p.m. and log off at midnight because if I don't we don't eat. It doesn't matter if she hasn't slept more than 2 hours in the past 48 (meaning me also).

Winner of the nursing home I never want to be in category is the Sunrise chain, which from this episode looks like a beautiful place with a bunch of people sitting on furniture with very little stimulation.

Whoa there,
I will have you know that my husband is Joe. I work a 8-5 job Monday through Friday. I do wake up after having a bad night with him and go to work. I took off a couple of days for the filming and they were at our house for 4 days. The weekend was when they started. So yes I understand the if they don't sleep I don't either. I know that Annie works too. It might not be an office job but she has to pay her bills and so do I.

Sorry you were offended by my post. I am giving my own experience.

What I didn't say is that I work at home (because we cannot afford any help) and I am working from my couch with my mother right next to me. I work a job where I am expected to perform a specific amount of work in 1 shift.

Imagine how stressful it is to have a magic number dangling over your head and mom's having a night where she is losing all of her things and wants me to find them immediately. Or how about the fact that if I have a job on my screen and it is not disposed of within 5 minutes I lose all my work and have to start over?

My mother gets $875 in Soc Security. This pays only for her Medicare supplement and her prescriptions, since she blows through the alloted Part D money by April of every year. I pick up everything else.

As I said, this is my experience. If you feel I was minimizing your experience, I was not. I don't care for the way each of the stories was pieced together. That's not your fault. They showed what they wanted to show, that's all.

Oh Alan I am right there with you, I was so glad to hear from M Oregon and Maple Corners. I think it is great they have come on these boards after seeing their stories on HBO. I just had such a sense of understanding them after watching their segments on the memory loss tapes. I just have such a connection (in my opinon) with people who either suffer with diesease or care for someone. I don't have that with my friends here in my life, and it's only because the really don't understand. I don't blame them for that. But alot of them do not understand why I am over at my parents place so much. I did have one friend honestly tell me that she could not do what I do, I told her if she was faced with something like this I think she would suprise herself.
She was very supportive of me when I had to move in with my dad for those 6-7 weeks. She would bring her girls over and visit me. I was unable to really get out and see anyone at that time so it meant so much to me that she would come to my dad's and visit with us and we go use the pool. My dad so enjoyed her daughters and I told her she should be proud of them, at 7-10 they were really good with my dad. The innocence of chidren, they did not seem to see anything wrong with him.

Whoa, I'm hella late for this discussion! I watched the entire thing on line last weekend, and loved it.

Granted they didn't show the really ugly side -- no poop smearing, tantrums, caregiver meltdowns. But I truly think that showing that stuff would have been way too much. From an awareness campaign perspective (and this is me with my professional public relations hat on) you can't raise awareness if the subject matter is going to freak your audience out so badly that they stop watching.

And even if they didn't turn the TV off, I'm not convinced though that people would rally around the cause if they saw shocking material. It would more likely have scared people deeper into denial.

In any case, all of that aside, they did a better job than any of the other series have done. There was a lot more realism in it than there has been before. And for the uninitiated (which is the demographic whose opinions need changing -- no sense in preaching to the converted) for the uninitiated, it was a really good introduction -- one that packed a good punch, I think.

quote:

Originally posted by howdy2u:

quote:

Originally posted by Wife of AD patient:

quote:

Originally posted by howdy2u:
Somewhat disappointing. Definitely provoked some emotions in me, but it did not truly show this disease's ugly side. Everyone with the disease seemed to grudgingly accept it, nobody had to get guardianship over their LO, no siblings fighting, everyone had support, nobody except perhaps the people who lived out in the country (the place with the fence) seemed to have financial problems or have to fight to get disability or SSI.

What caregiver looks as put together as most of the caregivers on The Memory Tapes? Do they get out of bed looking like that or what? None of the caregivers work, either. Come to my house, where I have to do everything I do for mom AND log on promptly at 4 p.m. and log off at midnight because if I don't we don't eat. It doesn't matter if she hasn't slept more than 2 hours in the past 48 (meaning me also).

Winner of the nursing home I never want to be in category is the Sunrise chain, which from this episode looks like a beautiful place with a bunch of people sitting on furniture with very little stimulation.

Whoa there,
I will have you know that my husband is Joe. I work a 8-5 job Monday through Friday. I do wake up after having a bad night with him and go to work. I took off a couple of days for the filming and they were at our house for 4 days. The weekend was when they started. So yes I understand the if they don't sleep I don't either. I know that Annie works too. It might not be an office job but she has to pay her bills and so do I.

Sorry you were offended by my post. I am giving my own experience.

What I didn't say is that I work at home (because we cannot afford any help) and I am working from my couch with my mother right next to me. I work a job where I am expected to perform a specific amount of work in 1 shift.

Imagine how stressful it is to have a magic number dangling over your head and mom's having a night where she is losing all of her things and wants me to find them immediately. Or how about the fact that if I have a job on my screen and it is not disposed of within 5 minutes I lose all my work and have to start over?

My mother gets $875 in Soc Security. This pays only for her Medicare supplement and her prescriptions, since she blows through the alloted Part D money by April of every year. I pick up everything else.

As I said, this is my experience. If you feel I was minimizing your experience, I was not. I don't care for the way each of the stories was pieced together. That's not your fault. They showed what they wanted to show, that's all.

I am not offended but all of you should know that we are in the same boat. We each have a different take on the same story. You are home working. I leave at 7 and don't get home until 5:30. Most of the day he is home by himself. Our kids help out as much as they can but they do have lives and responsibilities too. we are not well off. we had to fight to get disability for him. You could have a 5 hour film about this disease and not touch on all of the problems. So those of you who have a problem with the film and what it does not show get over yourselves. HBO decided what they thought would be a good compiliation of different stories. Our film was not about caregiving it was about the people with the disease and the different stages and how fast or slow it could go after diagnosis and how they were doing. The caregivers were secondary but still an importnat part of the story especially for those who were not able to articulate what they wanted you to know. My husband is still able to give thought to what he wants to say but it does not always come out the way he wants it too. I think the filming on all the parts was very good. I give alot of credit to Anne for allowing the filming of Cliff in his last hours. That brought home to alot of people that this is how it will end for all of us. There is not going to be a magic pill for those who have the problems right now. Lynn

quote:

Originally posted by howdy2u:
Somewhat disappointing. Definitely provoked some emotions in me, but it did not truly show this disease's ugly side. Everyone with the disease seemed to grudgingly accept it, nobody had to get guardianship over their LO, no siblings fighting, everyone had support, nobody except perhaps the people who lived out in the country (the place with the fence) seemed to have financial problems or have to fight to get disability or SSI.

I know some of what this ugly side can be or is. My story is too long to post right now. Being that I'm still trying to deal with the grieving process of my mom's recent passing without dealing with anger, would only trigger all the emotions I have gone through and make it tougher with the "let it go." I will say that what I went through and am still going through, deals with all the siblings, the reasons why my mom made a living trust, and how the "power of attorney" let the power get to his head and did everything that was against my mom's wishes. All that involved, elderly financial abuse, emotional abuse (isolation), neglect, and other things. Had I not gotten an attorney, most of the family would have never know where my mom was at or what was going on with her.
My mom passed away on 4/20/09 and we are still waiting to resolve some of the issues.

quote:

The last segment tore my heart out. I hope I can go the same way. What a measure of love he left on! His loving wife, who wanted him to stay, to keep taking the medication to prolong him, when asked why prolong him by the doctor, decided, as much as she wanted him present in her world it was not fair to him nor consistent with his wish to not be kept going with artificial means. What a wonderful woman, wonderful caretaker, wonderful expression of the selflessness of love. I loved her right back! I cried tears of unadulterated love on his tender good by.

I cried so much when I watched that part as it made me think of how I too had to let go of my mom. One learns not to be selfish.

Hi Lynn (wife of Ad patient)
Just wanted to say thank you for being in the HBO series and letting me see your story and just a glimpse of your life with AD. We all know how it is and your right we could watch 5 hours straight and still not touch on everything. One thing I know is this disease just frustrates everyone! Anger and frustration and sadness is the emotional rollercoaster that we are all on. Does not matter if we are wealthy or not, working or not or having outside help. It just plain sucks to deal with for everyone. That is all I can really say.

Once again thank you for putting yourself out there for us to see, I am sure that was not easy to do and some of the feedback is not always so great but I did want you to know that I personally was touched by each story, just saw so much of my dad in each of the segments.
And could really sympathize and empathize with you.

Take care and thanks for sharing part of your life with me.
Will be thining of you and Joe often....

It was incredible, wasn't it -- the generosity of all the people involved in the filming. I think there's another thread here thanking people, but I'll just toss my hat in here and say you ALL absolutely rock. I paused the film and googled Joe so I could leave a message on his blog. Opening your already busy/scary/stressful/wild lives up to scrutiny will help Joe Q. Public form a better understanding of this disease.