The general agreement is that HBO showed families without many complications. I've been trying to ponder on that, but haven't gotten very far.

What if they'd shown my pre-Seroquel temper outbursts? A 6'4" relatively young and pretty darn strong guy, on the edge of violence? What would have been the general reaction?

Put another way, what did HBO fear would happen, if they'd showed the rage that so many experience?

I think that may have been too much for some to handle. Although I would like to see what I am up against with the outburst. I want to see it all.

Maybe that is something we should bring to someone's attention. I don't know, I still think they avoided that subject to attract viewers. Alot of people that I know do not even want to talk about it or hear about this disease, for that number one reason that they fear it. Kind of like burying your head in the sand and hoping it will go away or not effect you. However, as we all know within the next few years or even shorter it is going to effect so many more people.

We can also think about these specials as maybe it is the start of something, maybe someone out there who can make a documentary will watch it and see that there was so much missed and do something about it. This could just be the start of more awareness and things to come.

Ok, I will take my suzy sunshine cap off now

Kathy, please! keep your suzy sunshine cap on!! I need optimists around, as I have trouble being that way myself.

OK, it makes sense that the producers didn't want to scare people so badly that they turned the show off. Thanks everyone for explaining that to me.

Millions of us in just this country (USA), and still people turn their heads from the illness. Are they really that fragile? I'll bet not. I think, for the most part, that people find the strength when they have to.

Any ideas as to who to approach, for the sequel?

I was fortunate to be able to preview all the shows. And I know there is an ugly side; I've witnessed it.
However, I hope you can be as optimistic as I am after seeing both science sections. There is even some hope of reversal. It was actually working in clinical trials until a few people died. A friend commented at that time, I'd have rather had my mother die while on the trial than see her as she is now.

Hi to All,

LOOK, at least it's out there getting some Attention that We desperately need!!

I agree it was too clean, too sanitized but what did you expect for the first try? And most of the cases didn't appear to suffer the financial burdens most of us suffer.

Like someone already said, HBO didn't want to SCARE the public away it wanted to draw them in. I hope it did just that.

As a patient with EOAD and a Caregiver I was a little disappointed. But, I am very glad it is getting out there. Perhaps our VOICES will be heard??

My hope is that one or more producers are taking the time to read what we're saying, and they're taking notes.

You know what would make me think this was the best thing on Alzheimer's, ever? To know that this was just the first wave. To find out that more documentary is being planned, and they want our input.

That would make me the happiest I've been in years! (OK, my last few years haven't been that good, but you know what I mean.)

If you want to make sure your voices are heard, write a letter to the producers. I'm sure someone at National can give you names and addresses.

Alan, I think there may have been a number of reasons for a "sanitized" version.

For one, the majority of AD patients never develop behavioral problems such as rage and aggression. So they may have intended to show the "average" journey, not the extremes.

Also, there must have been a concern for the dignity of the patients, as well as serious ethical issues. Very few have the keen insight into their problems that you have. Few, if any, would be able to give informed consent to have their illness publicly displayed on international TV and the web, especially in the later stages.

Then there's the fine balance between educating and horrifying. We all want to encourage early diagnosis. How many family members would rush to diagnosis if they'd seen the very worst this disease can do? We want them to watch the entire series, and study the website. How many would do that if they were inundated in ugliness?

Then there's the concern over stigma. We do not want people to fear and shun our ADLOs, we want compassion and understanding.

Finally, there's funding. Many studies have been done on what causes stigma, and on how to get funding for patient care, and for research, for diseases with a lot of stigma attached to them. There is no question that news stories, books, and movies that portray the horrors of a disease do a great deal of harm to the "politics" involved. It is important to strike a good balance, between showing the desperate need for the funding, and that there is hope for developing early diagnostics and effective treatments.

If the disease is hopeless, and dreadful, then no politician is going to waste good money on it. The money is going to get moved to something where it can "do some good."

Jab,

I'm not disputing you, but where are your stats coming from that the majority of AD patients never develop behavioral problems such as rage and aggression? To me that's the main distinction between what I call plain old dementia and AD.

Bits of the aggression were shown: Grandma telling child to go away and mom refusing to give up stone and biting daughters finger.

And yes, I agree with the reasons you are putting forth for not showing some of the worst sides.

The families who did allow filming of middle to end stages were so brave. And of course, like us, they probably did so to 'get the message out.'

I have come to see this as getting the "toe in the water," so to speak.

The presentation had to be able to be watched and absorbed by the general public at large, many who have not had personal experience with AD.

Perhaps the next "wave" of HBO special can begin to deal with the challenging issues and aspects of caring for loved ones with Alzheimer's Disease and Related Dementias.

I did glean that in the first of the HBO installments, that the majority of the individuals followed were pretty well covered financially and they had significant support systems that were fully engaged. Challenges different from that aspect were not the point of that installment. There was only so much time available, and they had to reach out as best they could overall in a general point of view I would suppose.

One of the largest issues at hand for many, is the lack of services mostly secondary to the lack of money to pay for them.

We have many challenges to be met in the healthcare arena which seems to be magnified in AD and Related Dementias as the dementias go on for such a long time. I am at least heartened to see even a little step being taken to bring this all to the fore.

I don't think that it is necessary to show the full blown agressive rages, but that does indeed exist for many.

One very excellent Neurologist I know said to me, "It is not the dementia that requires a patient to be placed in a nursing home, it is the behaviors that are the primary cause of placement." For many, that statement is accurate.

My mother has FrontoTemporal Dementia, (a related dementia), and it's all about behaviors - extremely so. My step-father has Alzheimer's Disease, and he continues to be quite mellow as his AD has moved forward. In the early mid stages, he began to have behavioral blips that were affecting his quality of life. Lesser measures could not quell them and they began to accelerate. Thankfully, the Neurologist prescribed appropriately and step-dad is doing very well without any side effects.

To really understand the day to day care issues and challenges family caregivers are dealing with, I invite everyone here, (if they already haven't), to click on the Caregiver's Forum on this site and read the threads. It will bring much understanding. And, if you are personally caring or coordinating care for a loved one with dementia, I invite you to join us there.

It continues to touch me deeply to see such loving caregivers who are meeting tremendous challenges and continuing to put one foot in front of the other. The support on that forum is amazing and is what keeps many of us afloat when the very difficult times arise.

Johanna C.
Peer Volunteer

Why didn't they show the anger/rage part of this disease? That was my first thought after Part 1 was over. My dad has major anger/rage issues. It just would have been helpful to me to see another family going through that part of it - to see their reactions and see how they handle it.

Thank you, JAB, Johanna, MiMi, Alan et al.

I think the main issue is that the word is getting out!

I think HBO had to do something "watchable" so that it didn't turn people off. We need people to watch and re-watch the entire series to get the full effects!

As a person with Early/Young Onset Alzheimer's and a Caregiver to a Mom with Alzheimer's I am very glad to get people interested in talking more about Alzheimer's and ALL the other dementias.
You have to talk about it before anything can be done about.

Please, keep Watching HBO!

I've watched three parts so far (internet site, since Comcast doesn't offer us the option of Free HBO for the series), and still have to watch the second half of the science and the caregivers parts. I think thus far the series is very good, especially for those who have no personal experience with Alzheimer's. We have, or are, experienceing this disease and its effects on our loved ones and families, but there are many who are literally ignorant of this disease. I don't mean that in a negative way, but many have absolutely no real knowledge of AD. I certainly didn't until my mother showed signs of it.

They touched on the anger, but I think if they had shown the rage that some exhibit, it might have scared away many viewers from watching the rest of the series. Personally, I wouldn't want that to happen because I want as many people as possible to learn about Alzheimer's and how it affects our loved ones, their families, and our health care system. I wish all members of Congress were required to watch this series and discuss it so that they see just what this disease is doing to our families, and take steps to fund medical care and caregiver support.

I agree that show does not cover the ground and may look "sanitized" but since "Every ALZ patient is different" how DO they cover the ground adequately. Overall, from what little I have been able to see so far, I think that they are doing a pretty good Job. The program with the kids was the toughest on me. I couldn't watch it all.

One thing is that they probably want to, and should, portray a somewhat hopeful picture. There are many many families who are going to be facing this issue in the years to come and dealing with a Loved one who Acts out or is violent is very difficult. But most Caregivers see these behaviors early on and learn to deal with them. It would be a much grimmer picture to see someone dealing with a full blown manic/violent AD patient on TV.

It seems that this program is trying to give a good and balanced approach with hope and Love. Which I think all us caregivers will agree are our veaviest weapons. We Hope and We Love - And we Get By. (hopefully without punching a wall )

Not a bad idea to go back to Maria Shriver and the producers with idea's for a sequel, follow up or something. Who knows what kind of research they did on the individuals they picked or how they even picked them. Would be a good idea to bring them to these boards to take a look at postings from both a patient and a caregiver. I guess it is hard because you could pick one or two people and follow them thru the ENTIRE disease and touch on all aspects. Medical, Family, Caregiving, the patients exepriences you could have a segment on each one. But as well all know even if they found a few more individuals to follow we still might not get every aspect of this disease as we do not know how they will progress. I just really think this project has put it out there even more now, but I still believe it has to be put out there even more.

As one of my friends said to me, I saw the preview for that special on Alzheimer's on HBO I knew you would watch it. Now did he watch it? Nope he did not and he had been thru this with me a little bit in the beginning. But he did not watch it and I believe alot of people did not. The key is to really get it out there now.

After having watched the first 3 parts, I can honestly say that the portrayals are a good cross section of Alzheimer's patients. I too was concerned initially about the anger that some Alzheimer's patients display (my mother included) not being depicted. However, after watching the second part, they did touch on it.

That said, I do wish they would have included someone in their 30's or 40's who is battling the disease.

In my experience, the Alzheimer's patient is simply overmedicated to resolve the anger issue.

CGR, it's difficult to make fair judgments about how much medication someone should get, just looking at them. I consider being heavily medicated a small price to pay for living at home, and not hurting people.

Depending on how my brain continues to deteriorate, I could conceivably become so raging and psychotic that the amount of drug it takes to keep others safe from me, would leave me looking pretty over-medicated. (How's that for a thought to dream on?)

I've come to suspect that the producers of this series picked families they know, to feature in the documentary. All their friends would likely be wealthy, and accustomed to a world where price is not an obstacle to care. If they'd like to use another show to examine people with more problems, both with the disease and poor finances, I offer myself as one of their consultants.

Mimi, the studies I've seen indicate that less than a third of AD patients develop the really unpleasant behavioral problems. You're not the only person who has said they'd like more information, so I'm pulling together a "report" that covers those studies (with links to some of the better papers, so you can read them for yourself). It's taking a while, because I wanted to include studies on things that can help prevent behavioral symptoms from developing.

BUT! please note that I'm talking about AD patients, not patients with bvFTD, semantic dementia, Lewy body dementia, or vascular dementia. As Johanna says, some of these dementias are "all about behaviors -- extremely so."

Thanks JAB. I look forward to reading them.
And with all the data on imaging and what we are learning from it,[the Alzheimer project has been an eye opener.] it may be that a change showing up in a specific area of the hypo campus will clue the medical profession into watching a particular patient for symptoms, or even possibly medicating before these symptoms develop.

I would rather see my dad "over medicated" yet peaceful than to see the mental torture he is in right now. If he had a broken leg, I'd rather see him him over medicated to ease the pain than have him suffer in pain. In this case, it's not his leg that is broken, but his mind.

I don't know if it is appropriate for me to respond to this thread as I have not seen the series but reading the responses this far I feel more isolated than ever. We live on the dark side of Alzheimer's Disease where violence has been the most challenging issue yet.

In July of 07 my husband snapped before my eyes and was then diagnosed as having Alzheimer's plus psychosis. He was now truly dangerous. We tried every med on the market to find relief for him to no avail. Our only option was to place him at a State facility and that was something I just could not do so with great reluctance his neuro team released him to me after I had time to prepare this house for his care.


We may just be 1/3 of the population with behavior issues but we are the ones that fall through the cracks. Facilities will not accept a person whose behaviors are out of control so if you have a person out of control and does not respond to medication who do you turn to?

I wouldn't want my husband's behavior filmed for all to see but I think it's important to note that there are those of us that have no services and are pretty much on our own.

Kristen, about a year ago I started developing a block of symptoms, including insomnia, irritability, paranoia, hallucinations. Though many dementia patients respond to low doses of medications, I did not. Luckily, I had a doctor who kept increasing Seroquel until it worked, which means at least 300 mg/day for me.

I've worked with many psychiatrists in the past, work related. Some of them are quite inadequate when it comes to medicating Alzheimer's and related disorders.

If your husband is at all like me, he needs to calm down in a cool, dim, totally quiet place. No radio, no tv, nothing stimulating. It may be uncomfortable for him at first, as it was for me. But for his brain to have a shot at calming down, things have to be calm around him. Having you sit with him may or may not help, it probably depends on why he thinks he's angry.

Alan...We are on the downhill side of the out of control violence issue now. I was comfortable with his team of doctors but even they threw up their hands in frustration in my husband's case. His neuro suspected that he had possibly an adrenal malfunction that was adding to his behaviors but I was unable to transport my husband for further testing on that issue. During his rage his adrenaline pump made him actually hot to the touch.

When I said I prepared this house it was to eliminate anything that would cause confusion or be of danger to him or me. His rages were a block of time usually lasting from four to six hours and during that time he was at war in his own mind and nothing I said or did slowed it down or calmed him. Giving him an environment to be safe in was all I could do. My presence was necessary of course but I stayed out of vision because I was often viewed as "those guys" and would be his target. No TV..no radio..no phone ringing..no doorbell..and obviously no visitors. My sister delivered my groceries to the front door for over a year.

In the mornings when he was calm we would drive over to our property where he grew up. A friend helped me put up a cyclone fence to keep my husband contained if a rage happened there and there were times when I had to sit on the outside of the fence and literally wait for the dust to settle before entering.

I was lucky...these rages were a block of time when it got pretty crazy but once they were over my husband was spent and back to just plain old manic.

Believe me, it is not my intent to scare anyone as my husband's case is extreme and most people with this disease or a mixed diagnosis will never have to go through what my husband has but I think it is important to note that there are a number of us out here where the extremes have prohibited us from receiving services.

Although I see or hear a glimpse of the husband I knew this man I love is the direct opposite of himself. Never ever was he violent or discontent but once he had that psychotic break due to Alzheimer's he was never the same. It is possible that the progression of the disease would enable the once ineffective medications to now work but at this point I won't risk what little calm he has. He is never ever still and on the move always but there is a sense of contentment now that he didn't have before.

I don't know why this issue is bothering me so much. I have a sense of victory having both of us live through the rage but also have a sense of being the child left behind. There are few of us that have to deal with the extremes but we are out here. Maybe I just need to acknowledge to those in similar circumstances that I do know you are out there and truly know what you are going through.

CGR,
Yes, there are probably people with AD that are overmedicated. But for some, appropriate medication (the appropriate part ever changing) is the only way for both the person with the disease and the caregiver to survive day-to-day.

Over medication will not change the course of the disease. Many caregivers have had to call 911 out of concern for the safety of the patient and the family. I am one of those.

As Alan has added, for him, the appropriate medication was a big help for him.

PatB

Over medicating is really not the issue on if a person can resolve their rage. With this disease and the different facets (did I spell that right) of it, anger and violent behavior is quite common. People with these behaviors are unable to resolve these angry feelings medicated or not. I truly believe the right mix of meds can at least prevent or make and episode a little less severe.

My dad is on serequel and I was warned up and down by the doctor regarding this medication, he is also the one that recommended it. As the doctor put it to me, it's a crap shoot on what would work for my dad. It's all trial and error at this point to see what will work. I am willing to try anything in the future to keep him in a calm manner (if I can) I know when I watched my dad get agitated and angry like he never had before that it was this awful disease just waving at me like screw you Im here and your not getting rid of me. My dad was NEVER and angry person at all. With or without the medication his mind is not able to resolve whatever issue is going on in there.

We are never going to find help for our loved ones or ourselves if we don't try different medications...for some it's all we have right now. Even if a cure is found I know it's too late for my dad so pill's it is.

quote:

this

I have scanned many of the replies to this discussion, and I wanted to follow up with some points that struck me.

Lisa commented on making our voices heard. To me, voices mean the voices of people WITH dementia first, and second, their caregivers. Alan said that he would be pleased with a second wave, with knowing that another documentary is being planned and that "they" want our input.

Hmmm, as an aside, were there any people with Alzheimer's disease on the committee that planned the HBO documentary?

Anyhow, Lisa and Alan, I wanted to make you aware of MAREP, the Murray Alzheimer's Research and Education Program at the University of Waterloo in Ontario, Canada. They have spent many years putting together and implementing a forum called "Changing Melody." I attended this forum in Toronto in November 2008. It was the fourth or fifth one. The forum is planned in partnership (real, honest to goodness partnership, not token partnership) with people with dementia. People with dementia are the majority of the speakers at the forum. The forum is meant to provide a way for people with dementia to network, to learn about living with the disease(s) and to process. It is also heavily attended by caregivers and professionals in the Alzheimer's industry. I remember one professional activity director standing up and saying that now she would have to go back and rework all of her programming based on what she had heard. There were over 400 people at the forum in November. MAREP is now trying to take the forum local and is trying to find communities who will put on their own forum. Their web site is http://www.marep.uwaterloo.ca/. They are doing an immense amount of work in the area of supporting people with dementia in living meaningful lives. Perhaps a documentary? Who knows!

Also, check out DASN, Dementia Advocacy and Support Network at http://www.dasninternational.org/. This organization is made up of people with dementia.

And finally, if you have not heard of Richard Taylor or read his book "Alzheimer's from the Inside Out," I urge you to make his acquaintance. http://www.richardtaylorphd.com/. Richard has lived with "the symptoms of Alzheimer's" for nearly a decade, wrote a book about his experiences, and now speaks worldwide. How do you ask? Well, he has discovered a purposefilled life... there's something to it.

Hi, I'm Annie, the daughter on the farm in the Memory Loss Tapes.

Alan, I certainly am not wealthy. I struggle to pay my propane bill every winter month. I don't know the producers or anybody involved with HBO. They found me through my blog. One day, out of the blue, I got an e-mail from an assistant producer (actually, I don't know her title, just her name!) wondering if I would be willing to speak with her about a documentary on Alzheimer's. Many hours of discussions with the directors, flurries of e-mails back and forth, some ground rules laid down, and I cautiously agreed.

Somebody wondered, maybe in another thread, about why the individuals shown ignored the camera. There was only one small, hand-held camera. There was one sound person, carrying a small boom over our heads. No lights, no multiple huge cameras on wheels or anything like that. Plus, I think, the magic of editing helped.

Dear LBramly:
Welcome to the Alzheimer message boards. There is a thread on the Alzheimer's under age 65 message board of Books for AD/Dementia patients. Can you post your information about the book you recommended on that thread? I'm sure our members would appreciate learning of another book written by an AD patient.

Iris L.

Annie, I know what you mean about the camera disappearing, from photographers I've known. They've all said pretty much the same thing, that after a while the subjects get used to it, and their real selves start coming out. I've experienced being on local market tv back in the South, and learned that I could be scared half to death when the program started, but not too long into it I was pretty much myself.

When I was observing how relatively well off the characters seemed, I apologize for not specifying that your situation was obviously different.

No wealth on my end either. Too bad, it would sure come in handy in a few years, when I'm in more trouble.

Annie, are you allowed to talk about your experiences with the producers, directors, and all the rest? I'd love to hear your story!!

Hi Annie,
Welcome to the Board. I'd be interested in hearing more. What were the ground rules?
I hope you had some photos of your mom's work!
And what incredible neighbors you had to help get that fence up. However, even with it in place, with all the animals and their equipment you had to be ever vigilant.

I do hope you are getting some respite. Are there any other siblings to help out?

What impressed me about your segment was how you kept trying new approaches. The incident with the stone. It looked as though she bit you hard.
When people complain that the negative side was not shown, that is something I point to.

Hello Annie, my name is Tom. I would like to extend the warm arms of our on-line community to welcome you to our message board. You did a fantastic job in the HBO movie! We are all here for one anonther and your input is very important to us. Hope that we can be supportive for you as well!

In June of 2008 I was diagnosed with Alzheimer’s related dementia. I began visiting this message board in August 2008 and the people have become important to me. I’m sure that you will find a number of supporters here for you. We all have bad days and we were all new once. Please don't let small instinces of typed thoughtes and this One-way Communication upset you.

Please call the 24/7 Helpline at
1-800-272-3900 if you have any pressing issues!

Please come on back to visit us soon!

Serenity Prayer
God grant me the serenity to accept the things I cannot change;
courage to change the things I can; and wisdom to know the difference

Annie, let me say WELCOME to the forum and THANK YOU for your participation in the project. I found your segment to be the most real-life and the most representative of the challenges caregivers face. It was very brave of you to let people in to see a glimpse of your life. There were several points I felt you made in a way no one else did:

1. The cost on caregivers of giving up a career to care for their LOs.

2. The financial strain that loss of career and expensive treatments can put on people.

3. The need for hypervigilance at any moment which is draining on any caregiver -- how natural it would have been for any of us to say "hey, Mom, look at this!" trying to engage her. No one blame you for lack of reasonable care there. The same when you went to check the mail and she heads off down the road -- it's an every second antennae-up experience. (And I was impressed that when you told the dogs to come on inside the fence that they did, so you could concentrate on mom! Oh that my two were that mindful!)

4. The self-doubt and reproach that occurs when one of those instances occur.

So many of the other caregivers made it seem pretty easy -- you were vulnerable enough to allow us to see the real pain and love that are mingled there. Thank you.

I was thoroughly charmed by your mother. The whimsical side revealed in her little tableaux -- I'm so glad you have thought to photograph them. I'm glad you have found a way for her to roam safely. It almost appeared that one of the dogs was keeping an eye on her as well -- we take all the help we can get!

You are very creative to have launched a backyard business (how does one care for an alpaca, anyway??) to pay the bills. I know it is very hard. You, like the many caregivers here, are an unsung hero.

Are you comfortable giving us a link to your blog?

Hi Annie-
It was good to hear from you on the boards. I have to say watcing your segment really touched me and I thought alot about you alot after watching the episode. I found the photo's that your take of your mom's (darn I can't spell the word you use so im going with artwork ) so interesting and I hope you post those on your blog (can you give us the blog address).

I would be interested in the ground rules as well, but wondering if you are not able to speak of them.

Bless your friends hearts with helping with that fence, it is so nice your mom has that land to walk around on and you can feel somewhat safe.

I think what hit me hard with you is listening to you say you had a job in the big city but left it. I do not believe people understand what goes into caregiving with this disease and just how much time is required. I was glad you made mention of that. My dad has AD and although he lives with my mom, she went into heart failure in early February. I had to move in with my dad. My sister and I had shifts going so that I could put in an 8 hour day at work and dad could be taken care of, we also had help from the independent facility they lived in. They came in from 7-9 so I could leave for work and my sister came at 9 so she could get her daughter off to school. I would get home by 4 so my sister could go home for her daughter. In between all this we would go to the hospital and then the nursing home when mom had rehab to visit her. I thought I was doing great trying to do everyting but it took a toll on me and was noticed by friends family and coworkers. I am now on a 6 week leave of absence from work recommended by my boss. I thought I was handling it all just fine but I was not taking care of myself. (who had time?).
So, sorry got off track there, my heart went out to you that you left your job, as I understand we can't do it all. Alot of people do not understand that at all. Thier first question is why don't you put them in a home? It seems to be everyone's question who does not deal with this. My dad is not ready for a home yet, that is one thing I know. When he is I will address it at that time. That is my answer to everyone.

It frustrate's me how people have no idea what goes into caregiving for an AD loved one, and let me tell you, I have it pretty easy right now compared to alot of people on this web site and it's still hard.

Hang in there, from what was shown on HBO you are taking wonderful care of your mother, but you already know that.

I am also glad you came to this website, I came a little over a year ago and it is my support group. I have made some wonderful friends on this site and they have helped me so much. I have also learned alot here which has helped me in my caregiving duties for both my dad and my mom now.

Take care and I hope we hear more from you!

Hi all,
Some of the reasons people stay out of institutions:
1. it's very hard to find a good one.
2. The longer one can stay out, the more money is left for when it's too much for caregivers.

I'm an 80 year old woman with Early Stage. I've been adamant with my kids: at some point, I go into assisted living or nursing home. They are not to be put through what we've watched a dear friend go through with her mother.

Mimi,

I wish my parents felt that way. I have had to recently move them into ALF. They hate me for it and don't understand all the reasons why we did it - even though I have been over it with them again and again. I know it has to be frustrating for them to be in a place they don't want to be in and not understand why.

Hello, Annie, Let me add my welcome to these message boards. Here you will find support and we hope you can support us too.

Thank you so much for baring your life to us. Your segment showed your mom is still inside her AD cage, still trying to communicate with you and express herself. I loved her collages, if they can be called that.

I was scared at the scene at the road while you looked into the mailbox your mom wandered off. I was afraid another car would whiz by. My heart was in my throat for a few seconds.

When you were working with the wool to make yarn, I thought, She's really determined to keep her mother with her. If you can, please tell us more about your story. I'd like to know how you came to raise the llamas and alpacas, and how long you've had the farm, among other things. Thank you for your participation.

Iris L.

Hi Kristn,

One advantage of knowing one has AD early on is that one can make rational decisions. (Of course, my kids will see how I react when the time comes; but they know what I wanted.)

And I have had the opportunity to watch caregivers, very close to me trying to cope. Some are able to keep the person home the entire time. For others, the time comes when regardless of finances, you and the person are no longer physically safe. And physical safety aside, when taking care of me is exacting too much of a mental toll, then it's time.

Hi Mimi,

My mom and dad are both past the point of being able to make good decisions for themselves. My dad has wrecked their finances and mom just sat back and let him do it. They lived in their home for 44 years. It is a huge adjustment for them to be in an ALF. Your family and you are lucky that you are still well enough to express your wishes. God Bless!

quote:

Originally posted by Mimi S.:
Hi all,
Some of the reasons people stay out of institutions:
1. it's very hard to find a good one.
2. The longer one can stay out, the more money is left for when it's too much for caregivers.

I'm an 80 year old woman with Early Stage. I've been adamant with my kids: at some point, I go into assisted living or nursing home. They are not to be put through what we've watched a dear friend go through with her mother.

Hi Mimi: I currently writing a series of blogs on having the "talk" with your parents about future plans regarding living and care arrangements (and everything else that goes into it) to avoid having to make last minute reactive decisions. What was different in your situation that motivated you to be proactive and make the decision for your kids, rather than having a situation like Kristn, where her parents hate her for having to move them in ALF?

Hi LBramly,
The key is EARLY DIAGNOSIS!!!!! When I was diagnosed, shock though it was, I determined NOT to keep it a secret. I received the final report of the verdict shortly before one Christmas, although I had been told verbally weeks before. Several of my children were with me during that week and I took that opportunity to tell them. Through my tears, we were able to have a discussion about the future.
None of us knew at the time that because I was diagnosed at a very early stage and because I have a vigorous regime for dealing with it; medication, diet, vigorous exercise and brain stimulation I'm holding things at bay. Scientists who are working on the best ways of dealing with AD, say my results should be achievable by most. BUT FIRST YOU HAVE TO ID IT EARLY.
The average person usually isn't diagnosed until it's evident to the world that something is drastically wrong. And by that stage, they are in denial. "So I don't know who's president? Who cares."

I'm always stunned and envious reading of AD victims that are aware of their diagnosis and prognosis. I suspect it's much more common that it's too late for that: by the time family/friends understand there's a problem, the AD victim is unable to process it and denies any deficits. For those that "know", it's GOT to help the caregiver in small, occasional moments. Just being able to acknowledge "I sometimes forget things" would be HUGE to a caregiver whose loved one instead accuses, blames, rages, covers, or otherwise sees him/her as the enemy. From my time on these boards, I believe this is so much more the norm for caregivers than having a loved one who knows. (Not to trivialize their disease/issues, I don't mean to do that. Just a big sigh.)

Hi Barbilou,
In time, we'll have the answer to your question. The phenonoman of being diagnosed early is fairly new.
So those of you reading this Board. Do you know of someone who did acknowledge their diagnosis? Were their actions, as they sank deeper into the disease, any different from those diagnosed at mid stage?

And we'd have to get a lot of answers to generalize. Every case of AD is a little different.

Mimi, my doctors all marvel at my relative self-awareness. I'm literally at one of the extremes of awareness of my dementia. I'm assured it has nothing to do with me personally, it's just that the illness takes a little different path with everybody. There are areas of my dementia where I'm worse than average, too.

But, remember that awareness is relative. For instance, I have no idea why my wife won't trust me with handling money anymore. And for some reason, I won't ask, I guess because no good can come from the conversation. My mood is far more damaged than average, unfortunately toward the rageful area, and I have to be pretty heavily medicated to keep from being dangerous.

I didn't get to choose. No one gets to choose, but it's interesting how we're all different, yet in so many ways the same.

If you have particular questions, I'll try to answer.

I'll try to remember all the questions, please ask again if I've missed one!

Mimi, My ground rules were no filming of bathing/dressing/toileting. Mom has always been a modest woman, so no way on that. My other request was that if the filming was causing Mom to get upset, I could call a breather. We never had to do that.

Carolina Songbird, the blog is at www.maplecorners.blogspot.com. Regarding the business, I had the animals/farm/business before Mom came to live with me.

quote:

Originally posted by CGR:
In my experience, the Alzheimer's patient is simply overmedicated to resolve the anger issue.

Overmedication, wrong medications, hypertension, simple frustration with life. I agree the anger/rage would be hard to translate. My brothers are in total denial; I've heard of them talking of mom 'gaming me'. For me, when my mom gets mad I just try to give her space and time to cool down and it usually works. I know, I am lucky and I am happy to be lucky.

Hi Colleeny, thanks for joining in the community. Be sure to explore all the forums, there's some pretty amazing information and support here.

Living in the present is indeed worth being reminded about. I like it when you remind me. I don't like it when a doctor dodges a question, and tells me to focus on the present. Which is what I get more often these days.

Your brothers sound like my brother, practiced oblivion. Most families pick one to be responsible. I can't quite understand how some people are satisfied with being lazy jackals and turning their backs on their families in a time of need, but there they are.

I have not seen any of it yet as I have been moving my mom and dad from one city to another. I will now watch it online. I was so interested to see what you all thought of it since I missed it. I probably shouldn't have read all these reviews before i went to the "movie"

Actually makes me want to see it more. THanks for all of the reviews..i will come back after i see it. I am wondering, however, if I should watch it by myself without mom first?? She really wants to see it. I think we will just watch together...its dad who has AD.

Thanks again!
kim

My husband Steve, our 23 yo daughter, and I watched it together and he was okay, but I think many people would not be okay who have the disease. We have always talked about his memory problems and dementia and had quite a discussion during and after the various segments. For those who are in the earlier stages, it will be a shock to see some of the people depicted. We all shed tears throughout the series. If you have any doubts about how your loved one will handle it, I suggest to watch it first and then decide whether they might be able to handle it.
I wasn't completely satisfied with the Caregivers segment. I don't think it really reached the core of how profoundly the day-to-day life and emotional stability of the caregiver are altered. It would be helpful for future segments to show a very comprehensive "day in the life" of the caregiver of people who are in the early, middle and late stages and caring for this persons at home. So many people are completely alone in this - they need to find someone like this to portray as well. Regarding the research segment, it all sounded very hopeful, but others have commented to me that all the hope in the world for a treatment a few years from now doesn't help our loved ones who are suffering and deteriorating now. It may not happen for them. For those of you who know me from other posts, you also know that some very important research was overlooked.