I started a separate discussion, because I don't know if others felt this way and I didn't want to be a negaitive on their discussions.

I also went to the Preview.
I watched all three nights of shows.
And I feel the same way as I did the night that I saw the Preview.....DEPRESSED.

I don't feel encouraged or optimistic.
But I also don't know if the films could have been done better in a different manner.
Truthfully, Granpa, do you know who I am?, I thought was the best. My mother doesn't have grandchildren, so it doesn't apply to us, but I thought that of the four this would have the best impact on the general public. That is just my thought.

The other films had touching stories, but I think that if someone had/was not dealing with Alzheimer's, they would have turned them off in a few minutes.

My fantasy would be a film that shows a person with a brief history of their life before AD a film history over the next 10yrs with AD. To see the physical and mental changes. Of course everyone goes through different symptoms, but it could just give an example.
Also the family crisis. How they cope, help, fight, fund it, etc.

Okay I'm off the soap box...........Your turn...

Another gripe.
The Memory Tapes
The daughter on the llama/alpaca farm caring for her AD mom. They are walking on the property and the daughter shows her mother a rock. Immediately mom puts the rock in her mouth and will not spit it out. The daughter frantically gets it out after a number of failed attempts. Later she reflexs in the kitchen and blames herself.

WHAT THE HELL WAS WITH THE FRICKIN' CAMERAPERSON???? Why did they keep filming while the daughter was trying drastically to get the rock out.
And then why did the editors keep all of the footage in????

Stupid insensitive unhelpful footage!!!!
Had the mom swallowed and choked to death, would they have kept that footage????

They should've stopped filming immediately after it went into the mouth and the daughter's first attempt to get it out. Then they could show after it was removed and the kitchen scene.

Your right Anita about the rock in the mouth scene. I've cried so much since Sunday watching this 3 evening event.
Here's something to ponder and I'm wondering if I made a huge mistake.
I asked my mom if she would like to watch some of this. I thought she would enjoy watching Maria interviewing the kids and learning more how the doctor's are working every day to come up with a cure.
An hour later she said she had seen enough. Mind you, this is a woman who shouldn't be driving but did for me as I had a procedure at a local hospital and was told I needed a way home.
I thought she would enjoy and embrace the new knowledge as much as I did. But when I called her today she said she had been awake all night with bad thoughts after watching the programs.
I told her I would never mention again watching all of this even tho I have it all saved on TV.
A real set back for me thinking this would be great for my mother to watch, but alas, it was not.
Awh, what we live and learn.
Marcia

Marcia don't be hard on yourself about recommending her viewing it. You didn't know, nor did any of us.
Kinda like the daughter with the rock...when she is alone in the kitchen saying, I should've known!!!!!
We are loving caregivers just trying to do our best with a bizarre disease that no one has the answers too. We are going to make more mistakes along the way...we are the Explorers.

Not to make light of the situation. But at some point when you make mistakes, it will be forgotten as soon as it is recognized. In my case Thank God.

Recently my mother was talking about her father that she loved more then anyone. He died more then 40 yrs ago. Mom is 95, but somewhere in her childhood. So when I mentioned that her dad was dead, because I wouldn't take others advice and lie, she cried like a child for two days.
Never again........I'm a liar now.

Personally I was glad they showed the rock incident. I think it was a much grittier (sorry no pun intended) depiction of caregiving than taking Dad for ice cream or filing his nails. It demonstrated how caregiving keeps you on your toes, that things we would do without a second thought can turn dangerous.

If the cameraman had swooped into help, the poor lady would have been so scared you would have probably swallowed it right there.

Not that everyone raises alpacas in their backyard, but that vignette showed many of the most common situations for caregivers: safely caring for a wanderer, financial restraints and the giving up of one's own life.

Hi. I'm Annie, the daughter in question. I've actually lurked on the Caregiver forum off and on for a several years, but finally had to register because I feel compelled to defend Nick, the cameraman/director. He apologized afterwards, saying he didn't know what to do. Should he stop and try to help, or keep filming. I told him then, and I still firmly believe this, that he did exactly the right thing. Keep filming. If he had put down the camera and tried to help, it just would have made things worse. Mom would have struggled even more if a relative stranger(If I remember correctly, that happened the last full day of filming), and a man to boot, had tried to intervene in any way. I was so focused on trying to get the dang stone out of her mouth, I didn't even know he was there.

Incidentally, I saw him a few weeks ago. He told me that he carried the stone in his pocket all this time, but had just lost it just a couple of weeks before.

How could they have left it out? It is the perfect example of the struggles we face every day. It seems many here feel that the films were too sanitized, yet this shouldn't have been shown? No, it is perfectly right that it is there.

By the way, Mom doesn't wear her dentures anymore, so my fingers were in no danger. Also, did anybody catch what she said when I finally got the stone out? She said, "You'd better run." She cracks me up!

I was more upset at the scene of a car whizzing by when the mom and daughter were at the mailbox. The mom wandered off a bit while the daughter was checking for the mail. I was afraid another car would whiz by. Even in the country cars drive fast.

Iris L.

Annie, I'm so happy you're joining us!!! It's unbelievable, that we actually get to hear some of what went into the making of the series.

Are there dogs around, Annie? Because her behavior was exactly like a golden retriever I had, I mean exactly! When I watched the two of you struggle over something in her mouth, that's what it reminded me of. So, I wondered if she was copying some playful behavior she'd seen?

Hi Annie!

I was just about to post that I disagreed that the cameraman should have stopped to help and I refreshed and saw your post.

My (and my dad's) situation is most like you and your mom's, out of all the scenarios that were presented.

I once had to practically wrestle him to get an eraser out of his mouth (and he still has most of his teeth!).

I know exactly how you were feeling when you were saying, "I should have known better." The problem is--you just never know for sure what they're going to do.

I did catch the "you better run" thing--that was very funny. My dad would have called me a SOB and glared. They do make you laugh sometimes!

Thank you for being so brave to share your story with us.

Iris, don't worry, the road in front of my house is very flat. I can see for miles, and I always check before we venture onto the road.

Alan, I suspect that my dogs do have some Golden in them, but they don't retrieve much. Mom just doesn't like me putting my fingers in her mouth!

KTdid, Ouch! I'm lucky I don't have to deal with that!

Hello Annie,
Sorry but I wasn't saying that the cameraman should help......Get the hell out of the way!
I'm glad that you were able to get the rock out of her mouth.

quote:

Personally I was glad they showed the rock incident. I think it was a much grittier (sorry no pun intended) depiction of caregiving than taking Dad for ice cream or filing his nails.

That was my thought as well. That and the scene afterwards in the kitchen, although hard to watch, showed well the things that can happen and how caregivers can get frustrated and (even temporarily) a little hard on themselves.

quote:

Also, did anybody catch what she said when I finally got the stone out? She said, "You'd better run." She cracks me up!

No, I was weeping for both of you...I've been in situations where I have wanted to kick myself because I didn't catch something quick enough, I really felt for you. That is funny!!

I wonder - -
Are any of us who are dealing with this issue on a day to day basis going to be satisfied with program like this series???
I mean - What were we expecting?? That they would show all of the horrid behaviors the frustrations, the absent friends and families?? In other words all of the negative aspects of caregiving??

Were we expecting the research segment to give us some timeline for the development of a cure?

I mean really - What were we expecting???

This program was designed and produced for an audience of people who are, or will be faced with this disease and I think that, over all, they did a pretty decent Job. Yes perhaps it was a bit "sanitized", but it didn't keep me from crying along with those other caregivers and grandchildren and people suffering.
I found the research aspects very helpful as the showed all of the different components and possible avenues of treatment. I freely admit to being poorly educated in all of this and found it to be very good.
I will be watching it again and believe it will help me in the care and treatment of my DW as well as looking out for myself.

Sorry for the little rant above.
Hope all will for give me.

Dear Annie: Welcome to this marvelous Online Community. I am so glad you have joined in this discussion.

I have to say, your segment was my favorite segment of them all. I felt closer to your story in the sense that the vast majority of those who join these forums are pretty much average people performing caregiving under often difficult circumstances with no large financial cushions to fall back upon, so your story was easily identified with.

Your mother, she is truly something; that twinkle in her eye is still there and I could really see her inner spirit. Those "art projects" she leaves that you film - I was astonished and then some made me burst out laughing. She certainly still has a very strong sense of whimsy. It made me wonder more about what she was like prior to the onset of dementia.

Of all her treasures, her Annie is the greatest. Your loving kindness and respect for your mother as an individual shone through loud and clear. You are an example for us all.

I wondered how you manage everything. The area in which you live is quite beautiful, but so much needs tending to. Do you have any assistance either with your mother or with the animals? Are you ever able to get a bit of respite relief?

I sincerely do hope you continue to drop in on the Caregiver's Forum and let us know how you and your mom are doing and also to share some of your wisdom. And of course, we are also here for you.

With a big hug for you and your mother,

Johanna C.
Peer Volunteer

quote:

Originally posted by MapleCorners:
Hi. I'm Annie, the daughter in question. I've actually lurked on the Caregiver forum off and on for a several years, but finally had to register because I feel compelled to defend Nick, the cameraman/director. He apologized afterwards, saying he didn't know what to do. Should he stop and try to help, or keep filming. I told him then, and I still firmly believe this, that he did exactly the right thing. Keep filming. If he had put down the camera and tried to help, it just would have made things worse. Mom would have struggled even more if a relative stranger(If I remember correctly, that happened the last full day of filming), and a man to boot, had tried to intervene in any way. I was so focused on trying to get the dang stone out of her mouth, I didn't even know he was there.

Incidentally, I saw him a few weeks ago. He told me that he carried the stone in his pocket all this time, but had just lost it just a couple of weeks before.

How could they have left it out? It is the perfect example of the struggles we face every day. It seems many here feel that the films were too sanitized, yet this shouldn't have been shown? No, it is perfectly right that it is there.

By the way, Mom doesn't wear her dentures anymore, so my fingers were in no danger. Also, did anybody catch what she said when I finally got the stone out? She said, "You'd better run." She cracks me up!

Hey Annie,
I started another thread about folks expectations and am curious about the particulars of being filmed for the program.
How long were they with you?
How many people were around?
How long and What Hours were the crews around?
How did you ADLO handle these people hanging around?

Please don't criticize Annie, she is doing the best she can. She is a full time caretaker to a person with Alzheimer's, she is doing a very difficult job under very difficult circumstances.

CGR nobody is critizing Annie.
Many of us are FT caregivers.

quote:

This program was designed and produced for an audience of people who are, or will be faced with this disease and I think that, over all, they did a pretty decent Job.

James,
That is your opinion. I feel differently and know that if my mom didn't have AD, I would have never watched any of these programs after the first few minutes.
I don't know you, and don't know if anyone close to you had breast cancer. Would you even watch an hour program about breast cancer, if you didn't know anyone that had it?
BTW, breast cancer can be more fatal in MEN, because people don't relate bc to men, it goes undetected too long.

Dear Annie:
Trying to make ends meet while taking care of a loved one with A.D. is daunting and can be very lonely. Thank you for sharing your story.
Where/how can the items you create be purchased?

Annie, so glad you registered. The segment of you and your mom most reflected my situation and I related most to yours.

The rock incident is one of a million "good ideas gone awry" that I've been through and I cried with you while you were in your kitchen.

What fascinated me was the collections of things your mom puts together. The one I see in my mind is the blue one, with the Dawn dish detergent in the middle. I'm glad you are photographing those - they are just amazing to me.

I am one of the people who was overall disappointed, but that doesn't mean I was disappointed in the families chosen to be profiled.

The producers/directors of the project should have known that a large part of their audience would be people dealing with Alzheimer's (and if they didn't realize this, they should have) and I would have preferred they get more into the daily frustrations of being the main caregiver with little or no support from anyone else.

The financial aspect wasn't mentioned at all. I certainly would have welcomed them to come along when I had to file bankruptcy last month.

The research portion gives me no hope at all. None of the drugs out currently were able to significantly slow mom's decline. In 2 years, she has gone from a stage 4 to a full-on 6 with some features of end stage.

I don't think they've even begun to narrow down the field as far as what they need to treat with the disease and it's going to be a number of years before they do. When they narrow it down, the future for treatment or cure will look much brighter. I don't expect it in my lifetime.

quote:

Those "art projects" she leaves that you film - I was astonished and then some made me burst out laughing.

Yes, I thought they were wonderful too!

I had watched bits and pieces of each one and I agree with Anita. I was very disappointed. The best one was the "Grandpa, do you know who I am?" and felt that was even a little disappointing. I watched the caregiver one last night and couldn't help but think this was a lame way of getting the word out about the disease. It was very mild in my mind and didn't show the full thruth of the disease and what it does to the patients and the caregivers.

On the other hand, it was a good start, but they need to delve deaper into the subject and really show the people out there what the truth is. Take away the sugar coating and be honest.

In a way though, the more I thought about it the more I thought that this was the right way to go with this series. AD is the second-most feared disease after cancer...showing the worst aspects might have been too much for many people and as a result many may not have watched more than one program.

There are so many questions, I hope I didn't miss any. Please let me know if I did.
Johanna, I am mostly doing this alone. I get help from friends when I have a special project going on (shearing), but the day to day care of both the animals and Mom is done by me. How do I manage? I don't get a lot of sleep! I get a weekend off about once every 4 to 8 weeks, and sometimes my sister will come over for a day.

JRKH, they were here 3 1/2 days. There were three people, the camera/director, sound/director, and one I don't know what her title was. The hours varied. 10-7 one day, 6 am to 11? pm the day we spent at the Mayo Clinic, 12 to 7? another, and just a few hours the last day. Something like that. Mom handled it pretty well. She mostly just looked at them like what the heck are you people doing. Sometimes she would try to look around the camera at Nick, trying to see his face, I think. At one point, on one of the longer days, she told them to get out! And you know what? They did. They stopped filming and we just chatted a bit before they left for the day.

FamilyFirst, I would gladly let you know where I have my stuff, but I wonder if that would be considered advertising. Maybe a peer volunteer or somebody could let me know if it's ok?

Gee Annie, I wonder how I could find your website????????Maple Corners Camelids
Hmmmmmm???

I thought the down times were lacking. The closest thing to what happens in my life is the guy taking care of his father. The father was pacing at night and they mentioned how he doesn't know where the toilet is anymore. We are not that close but it was the closest thing I could relate to.

I could not believe the one woman was driving all over creation to sing and stuff. No way she should be driving.

And I did feel bad for the mother daughter farm scene. It is too bad mom can't go to day care but it sounded like money was tight.

The science stuff was long, drawn out and boring but did have some good points.

And the hardest was the segment with the grandkids.

I also felt for the computer guy who planned on taking care of things when he got close to losing control.

just goes to show..we caregivers are as different as those we are caring for. I have only seen part one so far..i'm sure those of us "in it" are much more interested than the general public BUT at the very least, there has been information of AD given now that was not out there before. Wonder what the actual ratings were?

After having watched through most of the programs on video now I noted one thing that sort of stood out as a negative for me.
It wasn't how "sanitized" it seemed but rather it was the fact that they introduced teh programs and segments with no narration. They just put up a written text telling the audience about how bad ALZ is, how many have it etc.
Personally I think it would have had more impact if it had been spoken by a good narrator.

We all know how bad AD can get but why scare the normal population? They will learn soon enough.......

Annie,

It's so nice to see you here. Your website looks great and I will be contacting you privately soon.

The biggest things we caregivers feel and experience on a daily basis is the frustration of what I call "house arrest" and the financial stresses. The lack of money and caregiver respites were underrepresented in the documentary series as a whole, and I think your segment was one of the most honest and touching in the whole series.

Thanks for joining and introducing yourself. I wish I were closer to your part of the country so I could give you a day off!

Annie, I have to say that your mother reminded me so much of my mother in the way they sounded and acted. I did catch the "You'd better run" part, and it did remind me so much of Mother. She'd say stuff like that out of the blue and it would always make me smile.

Watching the scene where the man passed away was really hard. It took me back to Mother again.

And the lady who had to give up driving, well, all I have to say is that the people who get into a car with anyone who has AD and takes them on a drive to see what they can't do anymore, well, those folks are right up there with lion tamers and school bus drivers! How brave can one be? There was no way I was going to let Dad drive anywhere with me in the vehicle...

Annie,
Hello and Welcome.
Thank you so much for sharing your stories with us. You are an amazing woman! I'm not sure how you do what you do but thank God you can still do it.
I have EOAD and am a caregiver to my Mom with AD. Life can be pretty tough sometimes.
Again, thank you for allowing us into you and your Mom's world. You're doing a great job. I just hope you get a little more help and time off then you already have.

Please, continue to come here and let us know how you all are doing.