Michael Reagan had one about his father. Can't look it up right now and I would not do it justice writing it from memory (not intended as a joke).

Thank you so much for posting this and mostly for your continual support. I'm so pleased you believe in this project. There is a real need to see the 'lighter side' of this heartbreaking illness. Humor can provide comfort to the care givers while smashing the terrible stigma associated w/ Alzheimer's. Yesterday in the HBO series currently airing on this subject patients themselves laughed about memory loss humor and as one said 'you can't cry about this all the time, we MUST be able to laugh about it too'. I'm a big believer of survival humor to get you through to acceptance. These are the stories I want to hear.

So again - thank you - you know I'm one of your biggest fans in all you do, and I'm just a very lucky person to have you guidance and wisdom pushing me forward!

Hey - not sure why the above post said posted by John b/c it was posted by ME _ Deborah Levin!!! John might agree with all I said but I'm the one grateful for your support and assistance w/ my Alzheimer's project and I'M your biggest fan!

Best wishes to your friend, but my experience with Alz was that any humor, no matter how compelling, was a pathetic fragment of the spirit that would have been present without the disease. Humor, and it's appreciation, appear with any human presence. If and when they're earnestly sought, they'll turn up in infinitely greater proportions than what you'll find in the old folks home.

Some silver linings are wrapped in thick, horrific, dark clouds. Looking on the bright side can be pushed too far.

Gah, Crid!!!!! That link!!!! You're killing me.... Now I'm just going to smash up some glass, take a couple spoonfuls, chew, and swallow it all down. Ugh.....

Dont do that Juliana, the trick is to grind up finely before eating, that way you dont chicken out from the pain of chewing shards or getting them lodged in your throat

I understand what you are saying. However, this is a personal experience for me and seeing that my mother still has a sense of humor and/or some of what she does is funny, has made me more accepting AND less fearful, therefore a better daughter. So I can say that humor can save the care giver. I'm not trying to look on the 'bright' side as in denial but in the 'brighter' side as in survival. I know that to be open about this 'lighter' side - such as it is, has helped a lot of families cope and be more open. It's made it easier to discuss and that's never going to be a negative. My mother also still likes to laugh and luckily still has fun, even if she can't remember. In watching the current Alz HBO series, there was a discussion around a table w/ patients and their care givers. The patients talked about 'memory humor'. One man agreed and said he couldn't cry about it all the time and he needed to laugh, and admitted he did some rather funny things. Hey sometimes when we are standing on the gallows, gallows humor just makes good sense. I have lived w/ this for 7 years and laughter has made acceptance and my ability to live w/ this a lot easier. Honestly, I've heard this over and over again from others.

BTW, what is your link suppose to mean? Are you comparing my attempts at better understanding and living with a horrible disease to that of the death camps of the Nazi's?

However, this is a personal experience for me and seeing that my mother still has a sense of humor and/or some of what she does is funny, has made me more accepting AND less fearful, therefore a better daughter. So I can say that humor can save the care giver. I'm not trying to look on the 'bright' side as in denial but in the 'brighter' side as in survival.

I truly understand this, and it's why I think what she's doing is important.

Debbie, you should tell the story of the cartoon and its effects on that woman if you don't mind sharing that. It made all the difference for me in understanding why what you're doing is right on and much-needed.

OK, here's the story that made me realize this is needed....

In 1991 I received the following letter from The Alzheimer's Association:

Dear Ms. Levin:

In a recent edition of the Riverfront Times, you printed a cartoon depicting a square dance as and ‘Alzheimer's Hoedown.’ Several of our family caregivers of AD victims contacted our office to voice their outrage at your insensitivity...

No doubt, AD people will make foolish mistakes and not use good judgment. However, this loss of cognitive function is a result of a disease process. AD victims should be treated with dignity and compassion - not ridicule...

I suggest you owe an apology to the Alzheimer's families though out the country.

Sincerely,

Kathleen Higley
Executive Director

The cartoon showed a group of older men on stage shouting out calls to dancers below the stage. They were all 'older' people, the men on stage were repeating the calls over and over- the dancers were confused - standing around not knowing what to do.
(it's funny when you see it!)

At the time I was sent this letter I was an artist manager and 
syndicated the cartoons of a recovering alcoholic and quadriplegic,  
John Callahan. I was involved in many ‘discussions’ w/  directors of many associations, readers of papers, editors of those papers, and concern citizens who sometimes expressed outrage. Did John have some sort of special license to offend b/c of his own hardship? Did John touch the truth too closely for the comfort of some? Or was he just FUNNY!
 
This cartoon brought other letters telling me I had a warped sense of humor (true) and was insensitive (false). They suggested I would be more ‘aware’ if I only knew the pain that came with this decease. Interestingly at the same time I was opening these letters, I received a call from a friend, Lisa. She called to ask me to thank John for the cartoon because seeing it brought a belly laugh to her mother. You see her father had Alzheimer’s for 3 years and her mother was his primary caregiver. They lived in Miami and Lisa lived in Los Angeles and didn’t see them often. Her mother rarely talked about what was going on or how she felt. Lisa thought her mother was intentionally protecting her from what her father had become while she was also protecting her husband’s dignity. When the Alzheimer's Hoedown was published, Lisa clipped it and reluctantly sent it to her mother. Days later her mother called simultaneously crying and laughing. It was the first good laugh she had in years. The cartoon hit her funny bone. She admitted that not only had she been afraid to expose her husband’s condition, but she was also afraid to laugh b/c it could be misunderstood. The cartoon shed light on formerly dark areas for their family and they began to communicate about the topic no one wanted or knew how to broach. This same sense of truth has gotten me through my own situation when faced w/ this disease years later.

Thanks so much for posting that. Hearing Debbie tell that story made me understand how important humor is to people who are dealing with relatives with this. People assume they aren't allowed to laugh at a topic like this, but it's when you're really in pain that laughter is a really, really important release. I think what Debbie's doing, and the way she's posted about it (the thing I reprinted above) will give people who are dealing with much-needed relief.

Please do post stories on her site and encourage others who are dealing with this to post as well.

Oh, and go read the comment by Stef on her site, about her grandmother with dementia. It's the last one on there now I think, and moving, and explains what Debbie's trying to do even further.

I'll tell you THE only way I've been able to take care of my mother is with a sense of humor. I can still see the sparkle of humor she has too. I have a story for her blog..........and it's funny!
Humor is something u should never be afraid of.

My mom-in-law started to develop symptoms about 10 years ago, shortly before her husband died. We added on to the house (a bedroom suite with wider doorways, grab bars in the shower, etc.), and then had her come live with us.

The decline has been slow, but steady. Her worst moments are her most lucid -- when she realizes that she is, literally, losing her mind. At those times, I hug her and tell her that she is not alone. My wife and I know that the coming period, until the time arrives when we just can't take care of her at home any more, will be the worst. Ironically, because of mother/daughter issues, and because I am "the man", I am the one for whom she is most willing to cooperate when it comes to personal care. Thus, I end up providing the lion's share of that care when I'm at home. Life takes you some funny places, ...

But, light does pierce through the ever-gathering clouds. Her sense of humor is still there; she laughs at the jokes on TV ("I Love Lucy" is a favorite!), and at my silly antics performed for her amusement. She loves when I sing to her, or whistle a tune, and her smile of joy is radiant at those times. At those moments, her regression backwards from adulthood is almost liberating. The same type of interaction that brings pleasure to both parent and toddler is present. Her enjoyment of the moment is pure and undiluted with adult reserve. I, in turn, can joke and play with her without being self-conscious -- just as one is free to be silly with a small child.

I know this phase won't last. But I will try to enjoy it as much as I can, and try to bring her as much enjoyment as possible, until the darkness eventually wins.

Humor is one of the first things we get (think about babies laughing for simple reasons), and one of the last things to go (think about old people laughing for simple reasons). Clearly, it’s important -- a survival tool. When you are taking care of a loved one who has lost their mind, who is a childish version of themselves with wrinkled skin and hearing aids, you need survival tools. People who think that finding humor in diseases like alzheimer’s is wrong or pathetic or disrespectful have probably never actually cared for someone with the disease. It reminds me of people who have never cared of someone who is handicapped yet decide it’s rude to let some handicapped person struggle a moment with a door. Knowing how to preserve someone’s dignity can sometimes look selfish. I spent five years helping my mom care for my gramma who had dementia. Part of giving her dignity was knowing that she would never! want to be a burden and she wouldn’t want me to be sad. She would want me to laugh. She would agree that life is at the very least fucking absurd, that it is sad and funny and sad and funny.

I posted this on Debbie’s site, and I think she’s doing a great thing:

"Hey, gramma, look at Longs Peak today."
"Heey, heey, heeeey, oouuch, C-o-n-s-t-r-u-c-t-i-o-n W-o-r-k A-h-e-a-d."
"Yeah, that's right, should I push it to 80!?"
"Wooo, woo, ooooh, heey, heey, H-o-u-r-s O-f O-p-e-r-a-t-i-o-n."

My grandmother has gotten up in the middle of the night and toilet papered her walker and tied toilet paper bows around her ankles. She's called from her comfy chair in her library to tell us she's been stranded and that she's at 3340 Lariat Way, which is where she's lived for 15 years. Of course, we are dealing with the mysterious brain here. Sometimes, just when I was about to classify gramma as "not lucid today," she'd do something like tell me Bill Clinton stopped by earlier and then explain perfectly what a split infinitive is.

The most important thing was to never let her be wrong and to learn to laugh, but to get her to laugh, too--at times by doing things that made us feel really ridiculous and childish, like: putting on funny hats and making funny faces. Putting my shoes on the wrong feet and pretending to enthusiastically walk out the front door was always a real side splitter. I feel fortunate to have made her laugh hours before her death. She was no longer speaking and was loaded with morphine. I put on all of her jewelry at once, and I tossed my hair and made faces like I thought I was beautiful with 12 pairs of earrings clipped to my ear. Her nose crinkled--a laugh, because she could no longer swallow.

When my mother was in the hospital last year for cancer treatment, I took Dad's car keys away (something my mother should have done herself years ago but didn't have the heart to do), and I hired a home aide so I could work. My dad was convinced that mom was trying to keep him a shut in because she watched too many soaps and thought he would cheat on her while she was away. Because Dad thinks he's a super stud. He would never believe that both were my ideas. Poor mom took a lot of shit from him for it.

> this is a personal experience
> for me

It was a personal experience for me, too. It's a personal experience for everyone it happens to. So when discussing it publicly with people who haven't had the experience yet –but who almost certainly will have it someday– I think it's important to speak in proper proportions to the nature of the challenge, which is like nothing else in life. Car repair stories often have good jokes in them, cocktail-party stories that can almost make $600 worth of dent removal worthwhile. This isn't like that.

As the spiral began for my loved one, I mentioned it to a friend who'd had it happen to his father. He got the gist of where the conversation was going, and before he began spooling anecdotes, he stopped me with a palm on the breastbone as we were walking down the hallway. He waited for nearby traffic to clear, squared his shoulders, established direct eye contact, and waited a beat to allow our preceding conversation to well and truly expire. Then he said: "I advise you to put her finances in order." Then and only then came all his stories. As it happened none of them were funny... though several were outrageous. But the sequence of responsibilities had been established.

My aunt's finances were in order, anyway. But he'd made it clear that these times were not going to be about personal fulfillments. I was going to have to a better nephew whether I was amused or not, because it wasn't about me.

> I'm not trying to look on the
> 'bright' side as in denial but
> in the 'brighter' side as
> in survival.

I'm not just being a hardass here: The end of life isn't about survival.

Listen, I'm sorry this tragedy is happening to you and I hope genuine comfort comes to all parties soon. But everything I've learned about death –and it's not as much as my personal statistics might have offered– tells me that the only way to make death forgivable, no matter how it happens, is to have lived a good life beforehand. When the Big Hour comes, it's not about sex on the beach with busty babes and drinking and fuzztone guitar and elegant clothes and good books and laughter. You need to have already packed those things into the vault by that point.

> Are you comparing my attempts
> at better understanding and
> living with a horrible disease
> to that of the death camps

No. I'm saying that an earnest, back-slapping search for humor in those circumstances is "wildly misplaced", as Shearer puts it at link: "It's not funny, and it's not good, and somebody's trying too hard in the wrong direction to convey this strongly held feeling."

A tragedy like this drains the soul, I know. Afterwards, if you want to go to the Laugh Factory in Hollywood or the Giggles Club in Cincinnati, have a screwdriver, and listen to a wiseass tell jokes about TV commercials and airliner food, no one would begrudge you the outing.

Of course, the end of life is not about survival - but there is a quality of life that's important in getting to the end, as you point out. For the care givers who are caring for people with this disease the process is often very long - years. Along the way honest humor can make it all bearable. No one is saying this is about 24 hours of laughter, that would be insane. Much of my sanity has come from knowing I have put my mother in good hands, with a loving care giver, that I have taken care of her finances, that I have provided her with a comforting home - you get the idea - I have taken care of it all. And the reality remains that life has thrown us situations that make us both laugh out loud. We are not living in a back-slapping comedy film, we are living in real time and I love to see smiles come to my mother's face from SOME of those real time moments. This is also a part of my sanity.
I have been watching the HBO series currently airing on Alzheimer's. Two nights ago a group of people w/ Alzheimer's were sitting at a table w/ their care givers having a discussion. One of the men w/ Alzheimer's said there is a lot of 'memory humor' we laugh about. Another agreed and said 'you can't cry all the time, you have to be able to laugh'. He then inadvertently made a memory 'mistake' that he and everyone else laughed about. It was a way to exhale during an intense examination of what they were living with.
When my father passed away it was not from Alzheimer's and the process took months, not years. In his final hours the doctors allow us to enter the ICU with a guitar, we played music and sang. We sang Beatles and Sinatra songs my father loved. We weren't attempting to turn the ward into a nightclub b/c we needed a break, we gave my father a piece of his life - that gave him comfort, pleasure and peace.
I know I give my mother the same when we share a sense of humor. You might not agree, this might not be your way. I have talked to enough people to know humor HELPS many get through some very tough life experiences - including Alzheimer's.
And thank you for the conversation, I find it compelling - we just don't agree...

> we just don't agree...

I'm cooler with that than you think. I hate preciousness in all contexts.

Solemnity is one of the ugliest ways that people manipulate each other, and I'd rather have people's feelings scratched by inappropriate good cheer than by smug seriousness.

Futhermore, deaths like these are by definition a process, not a moment. I've seen a loving good men righteously laugh and trade jokes on the night of his wife's funeral, because her passing had been a several-year ordeal. The patterns and grinding had been so enormous that there was no need to pretend that any particular day of it was special.

Two requests:

First, When you talk about this experience, do not hesitate to tell them about the bad parts right out front. When I was going through it, the ugliest times were with people who wanted to pretend that it was an unusual outcome, or something surprising. It ain't. The horror of deaths like these doesn't get the respect it deserves. People oughta know. They'll laugh about something else later, anyway.

Secondly, be very thoughtful about how you approach people with this enthusiasm. The best-balanced, warm-hearted and easy-going people in the world might well draw a blank when approached for memories of something funny about these crises. Don't push them...

I have a story or two regarding my mother's life long total hatred of dogs, including ours. Then I started spray painting our dogs (with nontoxic washable paint) for every holiday and we have shared lots of better times with the dogs as the center of attraction. I'll go to your friend's blog and write several stories b/c these are the things I want to remember. I too feel wonderful about bringing my mother any kind of enjoyment because we all KNOW this won't last.

Humor when caregiving is a requirement. Many people don't get it. The last couple of years of my step-grandfather-in-law's life, he thought that he was living in a full service bed and breakfast with a very nice couple. That nice couple was my father and mother-in law. It was hard to live for such a long time without him knowing who they were, but they were able to build a nice adult relationship that made their caretaking easier for him to handle.

My husband has cerebral palsy. He is ambulatory, however several years back he broke his 'good foot' and was relegated to a wheelchair while things healed up. This made things difficult because he was unable to toilet himself. So, the first night after the break we are both up in the middle of the night trying to get him to the toilet. He is twice my size, btw. I managed to leverage him up and was spinning him around to sit when he slipped, bounced off the wall and fell to the floor. My husband started to laugh, then I started to laugh. We sat there at 3 AM laughing until we cried. I don't remember how we got him on the toilet that night, but I do remember the feeling of that laugh. It was what we needed at the time and it was a good memory for the months to come.

-Julie

I've had virtually identical experiences with Alz patients. The problem is that you and they won't often see that the same moments are funny. You're alone, they're alone, you're not alone with them.

Tell your friend t go to the Alzheimer's Association site, they have a humor link. Looks like they have come a long way from the year they sent her that letter!

My mother Anne went to visit her mother. She brought our dog, Trooper. When they arrived her mother said to the dog, 'hey Trooper, thanks for coming - why didn't Anne come?' My mother pointed out that Trooper didn't drive himself and she, Anne, was the person standing in front of her. They had a good laugh. She made lots of 'mistakes' like this but we never knew if she was just pulling my mother's leg b/c she had a great sense of humor - which is how we remember her!

my brother was one of the few i have heard about who didn't get upset when it was suggested he no longer drive. for most this is such an understandable loss of independence, but not for my brother. once he heard the doctor say we should consider letting him drive only during the daytime, only short distances, my brother heard he could no longer drive at all, which was probably for the best anyway. he LOVED not driving, even when he could still drive, he LOVED having me have to drive him around everywhere and suddenly he wanted to go places he had never driven to himself. we had gone full circle b/c when we were younger he was forced to take me everywhere. he felt like a prince being driven, we laughed how he finally got to be what he thought he was meant to be all his life. i really miss driving him around!

Personally I don't have any humorous anecdotes for this one.
I had a close relative whose Alzheimer's was hidden from the family for a couple of years. Shame and guilt seem to know no boundaries sometimes.
Some time after his death, his wife mentioned that he had moments when he recognized his own deterioration. I can't even imagine the terror of knowing you're losing yourself.
I think it was during one of these moments of clarity when he shot himself.
These days when I hear some idiot claim that suicides are selfish or cowardly I'm pretty quick with a "go fuck yourself".
I like to think he'd have laughed at that, at least.

> These days when I hear some idiot
> claim that suicides are selfish or
> cowardly I'm pretty quick with a
> "go fuck yourself".

Word.

Anyone still reading?

Even if they are cowardly, they're not necessarily immoral for being fearful.

I resented Cobain's suicide. He was a fucked up kid who had a small gift for pleasant melodies. He was financially golden, and he knew what it was like to walk into a room and have 20,000 people stand and applaud. And he was a father. But he was a junkie from a culture too patient with suicide.

And I once (distantly) knew a sensible younger woman who just made so much room for melodrama in her life that no one was surprised when she checked out early.

But these are the exceptions. Life can be terribly difficult, and we should be patient with people who don't see a sunny horizon dawning.

Otherwise sensible, I meant. She wasn't plain depressive....

Mark Evanier tells a story about animation legend Joe Barbera who began to grow older as he grea older:

"Paul Dini and I went to lunch with him and J.B. told us, almost by rote, an anecdote right after we ordered and the exact same anecdote once again just before dessert. Paul and I exchanged uncomfortable glances. Mr. Barbera was on Autoplay, no longer thinking clearly but still determined to be entertaining and to not disappoint his audience."

http://www.newsfromme.com/archives/2006_12_18.html#012601