i watched all the ones available on hbo ondemand today. my eyes are swollen. bawled at all of it. DH seemed not to intersted in the content but was visibly upset withmy crying and out of the blue tried to comfort me.. awww.. everyones stories are so close to home, its hard to not feel their pain. divvi
I watched part 2 last night, but had missed part 1 on caregivers, so watched it this afternoon. It saddened me, particularly the segment with the the gentleman who used to do the kids TV show and his obviously devoted wife, but I didn't cry. Later on, I found myself bawling the entire time I walked the dogs. Go figure.
Saw the episodes tonight and was very interested in the research. I want to get my husband in the trials to remove the amyloid. Where do I call? I know everyone of us wants the same thing- a miracle!!!!! My dh is only 61- maybe there is hope for him yet. Please dear God, help me find the right place to contact. I asked my 24 year old daughter what she thought of the show and she said she only watched the first one but didn't feel it adequately portrayed what the disease is. She said she did not see her dad portrayed in any of the stages-even the last stage showed someone more alert than her Dad. I called her tonight to tell her to watch but she was out. I know my dh is an organ donor but did not consider donating his body for md research till tonight. ANybody have any experience with this?
Well, there has to be something wrong with ME!! I have not felt like crying at ALL while watching it. Am I numb? I didn't think I was. I've found some of it very interesting some a little 'slow', a few parts really slow, but informative. I have enjoyed the parts with the doctors explaining visually .. how the disease affects the brain tissue. I will definitely watch it again. I have a house guest, and it's hard to really get into the program when they are talking and DH is moving about, and the dog has to be let "out".
I have enjoyed it...but agree totally with Joan. I probably wouldn't have dedicated the time to watch a special program about Lupus, even though I realize it's a horribly debilitating disease. She is correct in saying that only those who live with or are close to an AD patient would be interested. Just wondering if any of us have actually LEARNED anything we didn't already know?
I did enjoy the program, but I don't think I really learned a lot, and as others have said, it didn't show much of the real problems one runs into day in and day out. I ordered the DVD and will watch it again. The truth: I have learned so much more from this site and think it is the best education I could get as well as the support. Thank you, Joan!
And I thought I was the only one who didn't cry. Maybe it is our way to cope day by day. I don't tend to ruminate about things. I look ahead for solutions. Maybe I'm to "stoic" or done crying every day. I found most of the first day boring too. Glad to hear it wasn't only me.
Nancy - you probably didn't cry because of the detachment you have already done.
I believe those that needed to see it or were meant to see it - will. I love to watch programs on discovery health. Mystery diagnosis is one of my favorites.
I didn't cry either. I can't cry anymore. I don't know if it is the dry eye syndrom that I have or not. Also I agree I have become more detached to protect myself somewhat.
i am thinking that caregivers go thru 'stages' right along with the spouses as far as mental changes. i hardly ever cried before AD. never really found any remorse from not crying either. the detachment we are referring to, could be a protection mechanism set internally to protect us from the crying and feeling the deep pain associated with the losses mounting up. i worry if you arent able to shed tears during this process. i think if i didnt cry my body would find another outlet to deflect the pain in a more dramatic source of release, like super depression or neuroses of another sort, blood pressure or diseases of my own. one thing i have become aware of now is i feel so much more compassion now and am super sensitive to others pain which i didnt do prior AD. i think its a good thing for me to be spontaneous about my emotions now and release them when necessary. divvi
Thank you for your positive affirmation. We all need to hear that we're OK doing what we are doing. When everyone said they cried and cried, I felt so odd. I have cried a river of tears ...and maybe you are right, ... I am developing a detached attitude.
I was not looking at the TV but was in earshot when I heard someone say, "If you don't love them, you can't be their caregiver". I think that is true. But, along with love has to be a bit of detachment, to remain objective.
I watched the Caregivers and Part 2 of the Science tonight. Now I've seen all the segments. I've already commented on the parts shown Sunday night and Monday night. The Cargiver segment was okay, as far as it went--just not ndepth enough to suit me. I did like, however, the gentleman who'd care for his wife, lost her, kept his hand in helping at the NH, and met someone, remarried 2007. She helps at the NH too. The Science Part 2 was, I though quite informative and indicated a lot more progress in research than I was aware of. That section was a little more challenging than I expected, but I got it.
My DH walked in and out catching bits of the children section, and the caregiver section ans science tonight. He was teary a lot. Yesterday he asked me if he had Alz. "NO. You have VaD. It's a different kind of dementia." Tonight after the program he asked again, and when I answered he said "What's that?" I just verified wiuth him he knows how the blood vessels are big by the heart and branch out all over the body, getting tinier so they can transport food nd Oxygen to all the cells. Then I told him his vessels are weak and someimes clog or break and then th food and O2 can't get to the cells. If it happens a little bit the cells can heal but if it happens a lot or bigger, they get too hurt and can't work any more. He got that.
On a side note, one of my sister's stopped by after work, on her way home. While here she spoke with DH for a few minutes. After she left, he told me he'd talked to her about the shelled corn he needed her step-son to bring him--not the ground corn. He told me in a confused manner so I beeped her cell to verify. This sister, who does "get it" had to tell me, "He was really confused. Had me mixed up with another sister, and who had which son/step-son." She seemed a little shocked. I told her, patients with dementia can hide a lot for long time if you only see them in short visits. I told her it makes me feel like a fool, when I tell someone, and he seems "fine" to them. I also told her I'm glad she saw it, because now she understands more.
I watched the program about the patients last night. Although I did feel sad during the last segment when the patient died, I did not cry. Instead I found myself praying that my husband has that good a passing. He didn't suffer. His family, while in pain and sorrow, weren't in shock or surprise. I want that! I don't want to take it away from anyone else. I just want it too when the time comes.
The other think that hit me was that although he was being cared for by hospice at home, he died in the hospice house. Now that is a luxury most of us won't have.
I am glad I tapped because I did skip over a lot of the early sections. They did some things very well including showing the driving problem all of us have sooner or later. Because it was a woman patient she didn't get violent, and I think that was a mistake. Yes, they should have shown some anger as well.
I saw bits of the children's program and the first bit of the caregiving one. The big two part science program was still recording when I went to bed. I wanted to see the children's program most, but I doubt if I'll get much from it. The first bit of the caregiving program bothered me because it seemed it was more about the patient than it was about the caregiver, but I'm going to see the rest of it before I really comment.
My husband is so far along that there is no longer any hope. I doubt if the science program will have anything for me.
One thing that really bothered me about the entire group of programs is that they keep saying Alzheimer's and not DEMENTIA. Even in this group lots of us are dealing with dementias that are not Alzheimer's.
I think I've also moved beyond an emotional response to this terrible disease ... detachment, resignation, something like that. Maybe the emotions will return, I don't know.
Since my wife was diagnosed I've also noticed how fast people drive. Why does everyone have to be in such a hurry?
I've been journaling and had another thought I wanted to share.
Patients 5 and 6 out of the 7 probably upset me the worst in the show I watched last night. Almost certainly because my husband has not reached those levels of confusion. I know I've been thinking he is much worse than he really is because he is losing his language abilities very quickly, but he certainly is nowhere as near confused as either of those two people. I also think it is interesting that I skipped over a lot of the earlier patients, but not over anything in the last three patients. That was the information I needed. That is where we are going.
They talk about FTD in the science program, Starling.. are you talking about the lady on the farm, the one in the mirror, and the TV guy? Somehow I thought the TV guy had more awareness than the other two, yet he died only four weeks after that.. Note he wasn't in hospice until the very end.
Starling--You brought up a good point that I've been struggling with for a while. Once they start losing language, it's difficult to asses their abilities in comprehension, judgment, etc. I've made some assumptions about my husband's losses that were probably incorrect, not as bad as they seemed, simply because of the language problems. Once language is gone, how do you assess what's left? Much more difficult.
On the programs, the only one I've cried about was the one with the kids. That really got to me--seeing the pain they feel losing the grandparent to AD.
briegull....The TV guy, Cousin Cliff, loved being on TV. I really believe that he was aware of the cameras and that they were a comfort to him. My children grew up watching his show on TV. He was great with the children on his show and they really loved him.
I am the daughter of a recently diagnosed AD mother. We are certain she has had this for at least 7 years but now is starting late stage. The HBO program i saw last night really helped me in that I could relate to the stories told. My daughter and son help me take care of my mom and my dad. I was wondering if anyone had comments about the Exelon patch. Thank you!
also for Starling - I live in Virginia. With regard to Hospice. you can get hospice care in home. I have that for my mother. the nurse comes out 2 times a week and aids come out everyday to wash her, clean the bedding, feed her etc. My father helps with the caregiving as well as myself and my kids. The hospice is covered by medicare.
The TV Guy, Cousin Cliff...Did you notice that in the segment filmed while he was still home.. He had visited with his wife, Ann..and she reminded him that SHE was Ann...and he was surprised...THEN.... she said good night and left the room. Obviously the film guys were still in there..filming and he finished with a comment to them and gave the sign the guys behind the camera give ..the closing of the fist, which means the final seconds countdown on a show.... showing fingers...at 5, 4, 3, 2, 1...(close fist) program over! He remembered and I could see he was very comfortable with the cameramen in there. It was a good thing for him. I'm happy he got to be on TV..for his own spirit and it brought a little fun, perhaps, into his final days.
I thought the HBO doc was very well done. Hopefully it will fuel an increase in scientific research funding. It is scary to know that rapid scientifc progress is still measured in years. I know some people feel the series fell short because it centered pretty much solely around AD and just mentioned vascular dementia and did not address other dementias like FTD. But it think it was a good start to increase awareness. I have received very positive comments from friends and acquaintances who watched the series. They felt it was powerful and opened their eyes.
For those who are interested, the below is part of a news brief from the Alzforum.org.
http://www.alzforum.org/new/detail.asp?id=2122
"Visiting the labs of 25 research groups over a period of six months, HBO shot more than 500 hours of footage for the project, and only a small fraction made it into these four feature films. There was much more worthwhile material, however, and the editors, led by Hoffman and Matt Heineman, sliced some of it into two separate packages. One is the Supplementary Series, a set of 15 short films geared toward a general audience. Anyone can freely stream them off HBO’s website starting 10 May. Alzforum readers will see some familiar faces (Dennis Selkoe, Suzanne Craft, Richard Hodes, Gerry Schellenberg, Steve DeKosky, Randy Bateman, and many others). They will also “meet” families with autosomal-dominant early-onset AD (the DeMoes of North Dakota) and late-onset AD (the Nanney-Felts of Tennessee), who contribute so much to AD research but whom most bench scientists never have a chance to meet. Beyond that, HBO is currently editing a further 18 short films that will be simpler in their cinematographic presentation and geared toward a scientific audience. Alzforum will host these 18 films as they become available. HBO offers for sale a companion book, titled The Alzheimer’s Project: Momentum in Science, and published by Public Affairs, as well as a DVD set. Parts of the project will be available as HBO podcasts, and the HBO channel on YouTube.
Bench scientists around the world who labor daily to advance the understanding of this disease may enjoy seeing some of their colleagues featured in this multi-platform series. More importantly, the series affords them a rare view of the real, human calamity and the heartrending sadness behind the disease they are fighting with gels, pipettes, and microarrays. As a sharp and intellectual scientist, do you really know what it’s like to slowly lose your mind? The first film shows that. Readers who are not researchers may take solace in seeing that the disease that affects them so deeply is slowly giving way to broad-based scientific investigation. This is television well worth the time. Watch it, and let us know what you think."—Gabrielle Strobel.
Momentum in Science gave me more hope than I have ever had. Thought the episode with the children was fantastic. But again I have to wonder how many "outsiders" bothered to watch the series.
I must be the only person that didn't want to watch others going through what I already know is my future. I hope that doesn't make me non-compassionate. If my husband was not suffering from this dreadful disease, I would have really been interested...I love medical documentaries, however, this one was just to close to home for me.
Kadee, I didn't watch either and I don't plan to watch it. My DH is pretty functional except for short term memory. I have learned enough from this site to know what could be down the road so I don't think watching this documentary will make me any wiser.
Kadee and Jean21, I didn't watch it either and don't intend to. My DH also is functional except for short term memory and traveling. I too have learned from this site what our future may be like. Thank God for Joan's place!
I have also learned more here than any other place, but I was still interested in seeing the different patients, walkin, talking and interacting to compare with what I am seeing in my dh. Seen little similar to what I am seeing here. A lot of what I am seeing here is spinal stenosis with extreme pain causing walking and standing difficulties and I didn't see any of that on the show. I still wonder how much of my dh posture and back pain is due to Parkenism or stenosis. I may never know.
I thought the episode "Grandpa, Do You Know Who I Am?" was the most powerful of all the films. If only adults of family members who have AD could be as empathetic and caring as those wonderful children. Very moving. For me, it was the hardest one to watch.
Overall, I think they did a very good job and I feel that at least, some awareness has been raised.
Now if only Ken Burns would do a film about AD and all other forms of dementia!
Tonight Sid remembered AGAIN that the documentary was on. He watched the 2 science episodes, but when he mentioned tonight's, I told him point blank that it showed the descent and death from AD, and suggested he may not want to watch it. He thankfully declined.
The segment that showed the pictures of the woman professor as she progressed from the beginning to the end were so disturbing that when we saw that clip in DC, Tony had to leave the room. He said it was exactly how his wife (age 43) looked on her death bed.
And she didn't die from AZ, but from kidney failure, apparently.
Look, we ALL die. In a lot of ways I don't think that death per se is any worse for AZ patients than others, and most of the way along the progression the pain is for the caregiver more than the patient. I agree about not encouraging people to watch it, but I don't think it's any more disturbing for us than my DIL who's had breast cancer watching a documentary about AZ.
What I have never done is watch much in the way of "depressing" TV series. No Law & Eternity; no med programs, few "tear jerkers" of whatever variety. I don't even read novels that are sad. But a GREAT many people DO! and we can hope that a great many people will watch this and get some awareness of what is going on with an AZ patient, and maybe be more compassionate, willing to give to the cause, etc.
Death is the price of life. Right now, with the blooms everywhere, the greenery, the young beasts and birds - it's enchanting to be outside and enjoy it. Come join me in a walk!!
I wish it was not so expensive for the MRI where they inject radioactive to see the plaque. Since my hb was diagnosed with aMCI with no sign of dementia, we would love to know if there is plaque buildup.
I found the part on the BAP interesting. Wish we had known this information when he was evaluated a couple months ago for the study. We have the paperwork, but the segment on the Science part 2 really helped to know what it was more about. Other thought - how would they know if there is less plaque if there is not contrast MRI done before hand?
I know there are ones in the study - did you know how widespread it was beforehand?
My DH is in the Elan bap study. He has had two infusions thus far. Of course we don't know if he is on the drug or placebo. I think the Elan study MRIs are to check for bleeding or abnormal inflammation. (Does anyone else know more?) DH had a PET scan thru another independent study prior to the Elan study so we do know how widespread the plaque and amyloid was before the Elan study infusion. I can't recall if DH also had a PET scan thru the Elan study.
Can anyone else comment on their experience thus far with the Elan Bap study?
One comment I have to make about the HBO film is I am so thankful to all those who shared their stories and have participated in the research. When I first found out about the AD in my DH's family more than 30 years ago, there was a dearth of info. My DH family got involved in research around that time. I am so grateful to the DeMoe (EOAD) & Nanny-Felts (LOAD) famiies. They are so brave to put their stories out there. We are all benefiting immeasurably from their involvement. It takes volunteers to move the research forward as is apparent from the numbers involved in the Phase 3 of the Elan study.
My DH is in the Elan BAP study as well. He has had two infusions and is due for the third next next week. There are sub studies within this study having to do with further MRI's, PET scans and spinal taps. My DH signed up for the MRI and PET scan sub studies (Not for the spinal because has a problem with those.) I believe that the MRIs are looking for changes, or lack thereof, of the brain as determined by size and black areas or 'holes'. I assume that the sub studies are trying to see more detail so that future studies might better identify the delivery method of drugs to the brain as well as better imaging of those plaques and tangles. IN the Pet scan sub study there are 4 scans over the 22 month period. The extra MRIs are done with the regular study MRIs so I am not sure how many there are.
I am not seeing any result from this yet. I know that things effecting the brain work slowly, but......
I already commented on the series but will add that the Grandkids on the 'Grandpa' section are beautiful and amazing. I cried throughout and mourned that my DH will probably never know his future grandkids. (Something we always talked about and had great plans to enjoy.)
A couple of things I want to comment on from what some of you have said:
The "TV guy" was already on hospice, and was totally bedridden, 4 weeks before he died. It was a hospice nurse (aide?) who was giving him a bath. From the looks of what we were shown the caregiver had help for a lot of the day even at that point. When we first saw him he had hospice at home. But he died in a hospice house. That surprised me because except for the first hospice I ever knew about, The House of Calvary, which was across the street from my childhood apartment and where my sister in law died in the 1980s, I have never heard of a hospice house anywhere else, and to the best of my knowledge none of our LOs has died anywhere but at home or in a hospital.
I didn't think I would want to see these programs for all of the reasons divvi mentioned. I, also, have problems with TV shows that are too intense. I love LOST for example, but always watch it from recordings, because I have to skip parts of it in order to deal with some of the intensity. There are other really good programs that I know I would normally enjoy that I've given up because they are too intense for me right now.
But I've learned a lot from the two programs I've watched so far, and I'm glad I tried to watch them. And one of the things I've learned is that my husband is not as far into the disease as I thought he was.
Divvi, I agree with you! Starling, I agree with you too!
Briegull, I agree with you - it is a beautiful day for a walk - to enjoy Spring and the rejuvenation of plants, flowers and trees (for those of us who don't live in Florida, California or southern Texas and have had them around for a while!).
I want to learn everything I can so I can be prepared for what happens next. I have read books, gone to as many sites as I can online and those that interested me, I read them as well. This HBO documentary will be of help to those without any knowledge, and may help those in denial - if they watch.
My husband made a comment on the phone to our younger son three years ago that shocked him so much that my son called me at work and said that "Dad just told me he way dying and would be dead within a year" and wanted to know what I was keeping from him! I knew NOTHING at that point! My husband had not been diagnosed (wasn't for another year!) and was still good at hiding symptoms! I wonder if he knew that he was losing to much in his thoughts and physically, but didn't know what it was and didn't discuss it with me....I'll never know now.....
We all react to other people's stories in different ways....just as we are all reacing to our OWN spouses (spice) present situations in different ways. No one is right and no one is wrong...we all just handle what we have in our own way....
Starling, My 92 year old mother was in a NH, not for AD, but for other serious problems-end stage ovarian cancer, hip fracture, etc. She was in a hospice wing of a hospital at the end. My sisters who were with her said it was very peaceful and so much better the the NH.
maryd A hospice wing of a hospital. Yet another option I gather. Someone way to sick to send home because of everything that was wrong with her, but they didn't want anyone prolonging her life either. What a smart hospital! I'm impressed.
I have all of 2 of them and parts of the other two. The scientific ones I found very interesting. It was really neat seeing what research is being done. It does offer some hope but I am not too sure it will help most of us here as it will be years before much of what they are working on will be available. That said, I think those that are comfortable with and can do trials should because that will help. The two that I didn't watch all of - I'm not sure that I could watch them from start to finish - they hit too close to home.
I asked my daughter to tape the series and bring it with her when she comes to Maine next month. Then I will look at it with her. I had been told I should not watch it alone, and I didn't want my wife watching.
Mary, interesting thought we hadn't considered - people may watch and realize they've been in denial. And then go for tests - although i am avowedly a skeptic about what difference the very specific diagnosis makes (apart from med changes) I DO think people should begin facing the facts as early as possible.
Marsh, I don't see why you shouldn't watch it alone. I think people who say that are not used to what we go through on a daily basis.
Marsh, frankly, I thought it was very very mild, according to the life I live. My husband is trying to pull the crowns off of his teeth...now. You are a doctor, and you've seen much much worse. I think the absolute worse thing about the entire series was the few minutes they showed "cousin carl" in his hospital bed with his mouth agape as he took his last breaths. Earlier, the scenes with him were bittersweet, and loving. Sad, true, but very sweet ...Obviously he had a sweet personality that lasted till the end. Factually, the info presented Day Two would be of great interest to you, as the doctors shared their studies and research. You'd understand that much better than all of us. I found it interesting.
Nothing BAD. It was sad when the black woman applauded her granddaughter reading a picture book to her..then abruptly began to look angry, and the little girl, about 8-9 asked, "Grandma, What's wrong????" Her aphasia is pronounced. It shows several patients who have aphasia. I have said before, that it did not make me cry..It was rather sad, but not horrible.
i agree marsh, nothing we havent discussed on these boards. our stuff we discuss is much worse. the sweet little guy nancy is talking about the TV man, cousin cliff? or carl-whatever, was the tearjerker for me personally. he was such a sweet demented little guy and so lamby, like mine is now. and to have died only 4wks after filming, he was quite lucid at moments. his wife was a true treasure to him and seemed quite devoted to his care til the end. i guess his sweet nature and his life dedicated to making kids laugh was the clincher that added to the sadness. of his demise. bless his wife for sharing his final breath with us. the scientific parts are very good and i think i learned some from them too. by no means do i think they touched on the 'real nasty part of AD' or the tremendous caregiving and stress involved. but the awareness was brought out in a plain laymans way for the public to grasp the essentials. divvi
I found I was fine watching it on my own. In fact, it is better I watched on my own because I could think,process it and did not have to answer questions. I will watch it again with friends and family. I did not cry either but felt very moved and inspired by the love and courage. I don't think any of the parts about the patients or caregivers would be news to any of us on this board. I would definitely be considerate of LO. My DH can watch it because he is very open and shares alot about the disease.
For any of you with early on-set especially if you have an early on-set mutation, a supplementary film about the DeFoe family is now on the hbo site. My DH is also involved in this study at Pittsburgh.
Briegull re the early dx. In our case,an early dx helped because DH got on Aricept & Namenda right away. These are effective if started in MCI. My DH had a marked improvement when he started the meds. Also, he was able to get disability retirement rather than getting fired. (His employer was getting ready to fire him.) People don't realize the person is ill and can think it is just poor behavior. Although the HBO series did not address disability, medicare, health costs etc., I hope there is followup series that does.
Marsh--I had also been told not to watch alone, but I agree with Nancy and Divvi that what we all go through daily is much worse than what they showed. We have all felt such sadness over our spouses and there were no surprises for anyone who is already educated as to how AD devastates the persons with it and their families. The program was well done, but I think anyone who has experienced it in real life would say it was a somewhat sugar coated version. I don't think the general public could take a more accurate portrayal--they would just turn the TV off.
There is a real nice hospice home here in Vancouver. My sister used it for a week of respite care when her husband was so ill - before he died. It is costly though. It was a beautiful, serene home. My sister wanted her husband to die at home, but for those that do not, they can move to hospice when the end is near. That seems to be what happened in the film.
As for the mouth being open, that is normal on death, so are open eyes. It freaked my younger brother out when he saw our mom that way.
I am going to have to get caught up and keep track of when new film is released. They said there was 500 hours of science research filming done and it will be slowly be released on their site or you-tube. Should be interesting.
Tonight was the Farah Fawcett documentary. In case you missed all the publicity about it, she's been documenting her cancer for several years. She's apparently near death.
I'd be curious about the ratings of her show vs. the AZ one.
Probably get good viewing since 1) it is on network television 2) she is a popular and well known actress so people will want to see it - those who care and those who just want to see her suffering. Also, how many of us know someone with anal cancer? Didn't even know it existed until she was diagnosed.
If a well known person with AD did a documentary of their downhill slide, it probably would get a lot of views too.
Say: Charlton Heston...MOSES, for heaven's sake. But, unlike all of us, too many people want to go into hiding when they have AD.. It was, what?, 5-6 years ago when he made his announcement... Perhaps then it was something no one would want to share.
Anyone will talk about heart disease, cancer, birth defects, and spinal cord injury and everyone will relate to it because someone they know had the disease. I heard Maria Shriver say on Larry King (I believe it was) that she tried to get this Project going 5 years ago and no one was interested, and she kept on until she finally sold the idea to HBO. That isolated many of the viewers right away.
It's so hard. I keep thinking about Susan's poem. It was a true picture of what we face daily.