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Mary E.
I've been thinking that until the difficulties of caregiving become more "comprehended" by the general population, uninvolved siblings, distant relatives and others will go on not appreciating the primary caregivers of the world..  As the population continues aging, there will be more of us, going into OUR own older age, still caring for our very elderly parents..  This needs to come more into the attention of the population, not hidden and secreted away.. 

How many of us have TRIED to explain to our siblings how hard and overwhelming caregiving is, only to be scoffed at, or receive the suggestion to take anti-depressants, (wonderful for some but NOT just so we'll stop "complaining" to them). 

I think that popular culture - films, novels, TV shows - which demonstrate the difficulties - are one of the surest ways during the next decade or so - that people will begin to understand..  And maybe once there is understanding there will be more help for the caregiver..  So, I'm trying to think of different shows or books that have been successful...

Away From Her with Julie Christie.     Specifically about a Dementia patient whose husband could no longer care for her at home and she went to a NH and fell in love with another patient..  It showed the husband's torture over not being able to attend his wife's needs.  It didn't totally reveal the difficulties of caring for someone with Dementia other than her gettting lost and her confusion..

Now Voyager.  This addressed the difficulty of a young woman who was put into the role of caregiver for her elderly, controlling mother and expected to completely give up her life..  We've discussed this movie before - how Charlotte rose above and managed to be a caregiver and yet have her own life..

The Savages, recently discussed here.. 

There was an episode of Ugly Betty last week where the sisters had an argument and revealed to each other their conflicting feelings about caregiving..

I remember a PBS series that explored different family situations where one person was often designated as caregiver and the others "felt" they were doing their part when in actuality, one sibling was taking the brunt of the worry, stress and responsibility..

Can anyone remember other titles??  It would be nice to have a list.. 

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Hi Mary E, Here's a list of movies, etc. from the New York Times New Old Age Blog:

I've seen some of these and none really showed the nitty gritty of caring for aged, ill people -- certainly nothing that matches up with what I've experienced. But I do remember in "Iris" the husband's disturbed surprise at realizing how resentful he felt at dealing with her.

Slightly off the subject, but on the same page as the NYT article were some caregiving quotes and one caught my eye. I have always felt a flash of resentment when people remind me that mom took care of me as a baby. It is NOT the same thing. This is what a home health aide named Dave had to say:

"The problem is that home health aide work is not as simple as it sounds. It is not being a live-in maid. It is taking care of a needy adult with a lifetime of accumulated behavioral nuances often complicated by chronic diseases. It is far more difficult and demanding than taking care of an infant. The liability is greater and the potential for error is greater. Then outside family members impose their own additional subset of demands and expectations. It is absolutely a labor of love which underpaid caregivers rarely adequately deliver. Any one of you consider the work of bathing an adult or cleaning up one after a ‘potty’ incident?'"

I thought you would relate to most of what he said, including dealing with 'a lifetime of behavioral nuances.' At least, unlike you, Dave doesn't have to cope with a parent/child dynamic on top of everything else! What I'm trying to figure out is how to dramatize a very un-pretty problem. If you want to inform the average American, you have to entertain him/her, huh? Steven Spielberg presents his latest big-screen blockbuster, 'THE POTTY CHAIR"! ... probably not.

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2nd kathy
while it wasn't particularly a movie characterizing caregiving, I found the Jack Nicholson movie, About Schmidt, detailed one particular moment that displayed what I felt my dad was about when he moved in here immediately after my mother died. Schmidt's wife dies and he expects his grown daughter, who is about to be married and living all the way across the country, to drop her own life, move back home with him because 'someone needs to take care of me.' The man was capable, able, healthy but had to have someone 'take care of him.'
 Prodigal, you are very well written. Have you ever thought about doing the kind of writing that would be needed to bring the emotions, struggles and processes to life?
Personally, I don't do dialog well but I certainly would buy a 'fiction' book about one's caregiving struggles. All that's needed to make a book marketable is an audience and this board proves everyday that there certainly is one.
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I will buy the book, as soon as one of you writes it.
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Mary E.

Thanks for that list - I'll check it out..  I really liked that quote by Dave.  It was so accurate except for what you perceived - that the parent/child dynamic is upside down and turned around.  The parent wants to hold onto his or her power and gets resentful about receiving the care and advice that he or she needs..  And the relationship suffers, because it puts the adult child into a servile role.  It is NOT like taking care of a baby at all..

The fact that incontinence and hygeine are not things people want to think about or deal with in topics of fiction is probably the very thing that keeps them from being addressed in films and book..  Who DOES want to know about this until they have to know??  But it's similar to some of our siblings who turn away and just don't want to KNOW what is happening and how the ONE sibling is able to deal with it.  I think it should be put right in people's faces, somehow..  It's not pretty but someone has to do it...

2nd Kathy,

I think that this is such a typical feeling among - well, (some) men in particular - but even women..  They just assume, like Schmidt (I'll see that movie) - that one of their children will take care of them and they don't know (or care) what it involves AT ALL.. 

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Mary E.
Prodigal,  Thank you so much for that link!!  I have already written down several titles and will rent them (hopefully) and will refer back to it often..

You know what I think I'll do??  My mother has a new DVD player.  If I watch a movie and think she would benefit from it in some way, I'll have her watch it..  I certainly don't want to make her feel bad in any way, but I imagine that some of these films may be interesting and enlightening even to someone 91...

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Speaking of the written word and caregivers, I just had to share one more item from the NYT site entitled "Learning to Be Good Enough." This is a quote from the essay by Jane Gross:

"In the past year, I have learned that there is no such thing as a perfect caregiver or perfect daughter or perfect son. Just when we think we have a plan, just when we think we have it all figured out, everything changes: a fall, a no-show paid caregiver, an irate sister or brother, a placement option that doesn’t work, or a medication that turns everything upside down. I think we should try to do the best we can, when we can. We should strive for good, sufficient, satisfactory, helpful, and healthy, or okay — never perfect. Perfect does not exit in the world of family caregiving."

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It is true there are not a lot of movies, tv shows or books detailing caregiving. In fact I was trying to think of one but kept drawing a blank except for one movie.

The movie was actually a love story but caregiving was a part of it as a husband struggled to have his wife remember him due to her dementia.

The notebook in my mind went through some of the emotional issues of caregiving, and was a tear jerker that left me crying for hours after it ended.

I remember one scene where the adult children kept trying to get their father to come home (Both wife and husband were in a NH), and to give up because their mother was never going to get better, and the husband refused.

He spent time daily at the NH doing things to try and get her to remember, sometimes he was met with anger by his wife, or confusion, and at other times she would remember and the husband's heart would soar only to be dashed a few minutes later when the wife again forgot.

Just a great great movie
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A long time lurker to these boards.

Try 'Three Women' by Marge Piercy - perhaps the outcome would not be palatable to all, but certainly deals with nitty gritty of daily care and coping with full time work on your own.
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The one's I've seen that are pretty good are (listed before on another thread):
The Savages (2007):
Mrs. Palfrey at the Claremont (2005):
Hanging Up (2000):
Click the links to read about them at the Internet Movie Database.
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A British TV show I stumbled upon recently: "Waiting for God".  It's about life in an upscale Retirement Home featuring a optimistically (mostly) man and his cranky contrary neighbor lady.  It's available for free automatic download for people who subscribe to Netflix.  I have no idea how I stumbled on it, but I've found it pretty interesting.
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Fictionalized stories are entertaining, but not helpful.  I wrote Stuck in the Middle...shared stories and tips for caregiving elderly parents.  My audiences told me that they need true stories and essential information. If you are stuck in the middle of kids, career, and aging parents, who has the time and money to go to a move?  You can take a book to the doctor's office or read on a lunch break.  It is time for publishers and screenplay writers to realize that there is a 50+ million audience of adult children caregivers.

Thank you for the list of movies.  I will share them on my webinar this week.

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Mary E.
Hi Barbara,

Thanks for the title of your book.  I'm sure some of us will love to read that, too.  The reason I've been searching for fiction is that I believe that sometimes, what people see while watching their "entertainment" can be very true to life and dramatic, and might seep into the subconscious.  I'm hoping that our siblings who fail to see the enormity of what we're doing or judgemental relatives who might say, "well SHE changed your diapers when you were a baby" will begin to "get" it through a medium that they WILL visit (while they wouldn't necessarily buy a book which is about something in which they are in denial).

I don't mean that true life stories are not interesting, educational, consoling and so on.  We need them, too.  Your book sounds wonderful for us and thanks for mentioning it!

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Prodigal (for 2nd kathy)
Hi 2nd kathy! Somehow I missed your post yesterday. Sorry! Thanks for the compliment about my writing ... I do think about creative projects from time to time but never seem to find the, well, time. Rather than a book, I fantasize about submitting a script for one of the popular TV shows (many will consider freelance submissions). Some of these shows will occasionally highlight a societal problem, and I think this may do more to raise awareness of our dilemma in the public mind. Probably kind of a dumb idea, but I do think about it. Don't know how I could effectively convey the long, exhausting journey you are on, or the 20-year saga Mary E has lived (and continues to live). My own story is too strange to make sense to the most audiences, but I think if I just focus on the eldercare aspect, that might work. Hang in there -- I know it's really rough right now for you and I wish I could think of something comforting to say that isn't totally inadequate or lame. Guess I'm not such a good writer after all ...

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2nd kathy for Prodigal

I know what you mean about never having the time. Actually, I could probably carve out some time to write. It is the interruptions that would hinder any attempt at writing something cohesive.
Nevertheless...I am still bold enough to encourage YOU to try it. You are right, some shows will accept an unsolicited script. Also, have you ever looked into Writer's Market? The book has an entire section dedicated to scripts and lists who will accept, who won't, prerequisites for submission, submission guidelines etc. Each company's website is usually included for further info on submission guidelines, what they are looking for etc. Since there has now been a little 'breakthrough' into a series with regards to caregiving and the fact that you could make a great case for a larger and growing audience due to aging babyboomers and the increase in the population who will be dealing with these issues, you would probably have a great shot.
My plan.....(whether or not I can work it eventually..who knows?) is to write a non fiction book about both my mom and dad and their love story through to their deaths. It will begin with a scene that I will always remember.
 My mom, 2 weeks before her death was going through experiemental chemo which was working well but really wreaking havoc on her body. She and dad decided to move into a retirement condo. Beautiful view of the mountains, they had already picked one out and construction of the project had wrapped up. Mom had been shopping for a new couch (what she did each time she moved) and they were quite excited. On the day they were to pick out final colors, they (and me) were waiting in the lobby for the agent and mom leaned her head on dad's shoulder (she was SO tired) and dad said, 'It all went so fast didn't it?' They had been married 53 yrs, since my mom was 18 and dad's statement about how quickly life had gone by has stayed with me. Perhaps this is why he is having such a hard time letting go of life now.
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