I Still Do

January 19, 2010

Kids and Beaches

Alzheimer’s can be such a heavy subject to write about, and to read about.  I’d like to lighten things up once and a while with one of my photographs.  It works for me, but what I want to know is if it works for you.  Please let me know how you feel about this direction.

copyright 2009.   Judith Fox

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January 18, 2010

Good Old Days

Filed under: Alzheimer's Disease, alzheimer's, caregiver, good old days, memory, memory lane — Judith Fox @ 12:04 pm

Ed and I spent a lot of time yesterday on a verbal trip down memory lane.  I talked about trips we’d taken, and focused on those moments I thought were most vivid and might have the strongest emotional context for him.  Ed seemed to truly remember some of the experiences I described. After the conversation, he thanked me for talking about “the good old days.”   Sometimes I’m so focused on today—and wanting to share my day with Ed—that I overlook what’s important to him now.   And what’s important to him is recalling those few memories he still retains.

I enjoy telling, and retelling, these stories to him—I also enjoy the challenge of trying to figure out which experiences he’s most likely to remember.  It’s a way of keeping the old new and interesting for me, too.

What strategies do you use to keep your conversations alive and fresh when you’re talking to someone with AD?

January 16, 2010

Lucid moments

Filed under: Alzheimer's Disease, alzheimer's, brain, caregiver, lucid, memory, Uncategorized — Judith Fox @ 7:28 pm

Today, when I saw Ed at the facility where he lives, he was extremely lucid; and it was very painful for both of us. The first thing he said to me was that he felt as though he were in another world.  He told me he didn’t want to be around people with his disease (he doesn’t remember that it’s called “Alzheimer’s.”)    He said he just wanted to hide.  

Ed was diagnosed almost twelve years ago and his ability to still recognize and articulate his pain is amazing to me.

I told him that I was working hard and doing what I could to help people understand Alzheimer’s;  that a lot of great research is being done in an effort to find treatments.  His answer: “That takes a lot of time and is very costly.  I want to be able to function now.”

I don’t think there are many advanced AD sufferers who are able to describe their feelings as well as Ed does—but that doesn’t necessarily mean that they’re not feeling what Ed is.  Some people have asked me if I think it’s harder for the caregiver than for the person who has AD, because the person with Alzheimer’s must be unaware of his or her condition.   In many ways, I wish that were true; on the other hand, as difficult as today’s conversation with Ed was, it was a real conversation between two thinking—and loving—people.

January 13, 2010

Making the Ordinary—Extraordinary

Filed under: Alzheimer's Disease, alzheimer's, caregiver, photography, Uncategorized — Judith Fox @ 11:35 am

While in New York for the opening of my photography show at the Andrea Meislin Gallery, I bundled myself up—added a few extra layers—and set off for a Chelsea gallery to see new images by one of my favorite photographers, William Eggleston.  Not everyone loves his work, but I’m a big fan.

Eggleston photographs ordinary objects that are usually invisible to the rest of us, and makes them extraordinary and beautiful.  What a gift.  He was also the first photographer to really bring color to the world of fine art photography—for which I’m grateful.  I found his new work as wonderful and fresh as ever.  

I don’t think it’s stretching, too much, to see a link between his view of the world and to living with Alzheimer’s.   I believe our perspective changes when we love someone who has the disease—and we learn to appreciate the small, formerly ordinary events, as special moments worth treasuring and noticing.   I hope you’ll check out Eggleston’s work and let me know what you think:   http://www.egglestontrust.com.

January 10, 2010

Opening reception

The opening of my solo show of photographs from “I Still Do” was yesterday at the Andrea Meislin Gallery in New York.  There was a wonderful turn-out and I loved every minute of the event.  I was also very touched by the people who showed up: there were four women who were high school classmates of mine with whom I had been out-of-touch for fifty years; there was a friend of forty-six years who has seen the births and death in my family as I have in her’s; there were old friends and new friends—friends I’ve made in business, friends I’ve made through photography and friends I’ve gotten to know because of AD.  

And then there were the strangers who became close friends for a few minutes during the reception.  One of them was a lovely European gentleman by the name of Eytan.  His wife was diagnosed with AD four years ago.  We shared the pain of being married to someone with AD—the  experience of trying to do your best, but never knowing if it’s good enough.  Eytan and I connected during the short time we had together.  And there was Natalie, a young woman whose father has AD.  And Paul, the husband of a dear friend of mine who has dementia himself.

I was very pleased to see people connecting to, and through, the art; and coming together in the conviction that we want a world without AD.

December 20, 2009

Gifts for a shrinking world

Filed under: Alzheimer's Disease, alzheimer's, caregiver, Uncategorized — Judith Fox @ 4:40 pm

It’s sad when celebrations and special days lose their meaning.   Ed’s birthday is on November 29—my family and I always combined our Thanksgiving dinner with a birthday celebration for Ed.  It was part of our ritual and we always looked forward to our own tradition of carrot cake and candles at the end of our Thanksgiving dinner.  When our grandchildren were younger, they made birthday cards for Ed and bought him traditional birthday hats which he always wore for them.   

This year, Ed and I had a traditional Thanksgiving meal at the facility in which he now lives.  Surrounded by other caregivers and people with AD.   On his birthday, I brought the celebration to the facility; Ed enjoyed the sweets but he didn’t care that it was his birthday.  

This Christmas, one of Ed’s daughters sent him a twelve inch Christmas tree, thinking he might like to put it on his dresser.  It was sweet and thoughtful to send him this reminder of Christmas, but he doesn’t recognize the tree because of his visual agnosia (his brain doesn’t properly interpret what his eyes see).   At the facility, trees are decorated and hung with ornaments; it means something to the staff and visitors, perhaps, but nothing to Ed (and I haven’t seen evidence that it has meaning for other residents.)

So, as Ed’s world continues to grow smaller, what is important to him?  What gifts does he want?  It’s simple, really, he wants someone to talk to him; someone to understand what he’s feeling; someone to hold his hand; and someone to let him know he’s still important and loved.  Basically, what’s important to him is important to all of us.

I wish you many moments of joy during this holiday season and in the new year.  And I wish you the gift of love.

December 18, 2009

Talking with Friends

Filed under: Alzheimer's Disease, alzheimer's, caregiver, friends, Uncategorized — Judith Fox @ 7:18 pm

Earlier this week, friends of ours from Virginia stayed with me for several days.  It was wonderful spending time with them—lovely, easy and stimulating.  We talked about everything, as friends do, including Ed.  We reminisced about the time Ed made his fourth hole-in-one and how I held a surprise party for him and gave everyone a baseball cap with FOA embroidered on the back.  FOA stood for Friend of Ace; Ed had first been called Ace when he was a young pilot in the Naval Air Force.  Our friends still have, and wear, their caps.   

We looked through their copy of I Still Do together—laughing at some images and choking up over others.

I dropped Ed’s name into conversations; we talked about him as he was then and we talked about him as he is now.  We talked about Alzheimer’s.  And we talked about their recent travels,  their family and mine, our mutual friends, food, world affairs—the usual range of subjects.

I’m grateful for good friends—and I’m glad that Alzheimer’s no longer lives in our closet.   Alzheimer’s should be part of our conversations and something we can discuss freely with friends.  I remember the dark old days when I couldn’t talk about it;  it wasn’t very long ago.

December 9, 2009

Memories and Truth

Filed under: Alzheimer's Disease, alzheimer's, brain, memory, Uncategorized — Judith Fox @ 7:17 pm

I’ve always been interested in memory and there was a time in my life when I wanted to do research on the subject.  That was until I realized that statistics was a necessary part of the program.  So, I altered my career goals—but my interest in memory continued.  How ironic that, many decades later, I would be married to a man with Alzheimer’s.  And what I’ve learned is what I suspected all along: that our memories are less exact and less reliable than we’re generally willing to admit.

Did you ever see the film “Rashomon”?  It’s a Japanese classic from 1950 that tells the story of a rape and possible murder through the wildly contradictory stories of four witnesses to the crimes.  The film deals with issues of memory and truth—if you haven’t seen it, you might want to check it out.

My husband sometimes confabulates—tells stories he believes to be true, but which aren’t.  He’s neither deliberately lying nor intentionally trying to deceive.  His challenged brain is trying to make sense of his world.

We’re just starting to understand how our memories work.  Our brains are amazing and complex, and current research is so exciting that it almost makes me want to give statistics a chance.

December 3, 2009

Talking about Alzheimer’s

Filed under: Alzheimer's Disease, alzheimer's, caregiver, Uncategorized — Judith Fox @ 9:48 am

While I was signing copies of “I Still Do” at my New York book launch, I was deeply touched by several people who tried to tell me their story but were so new at it, so raw, that they couldn’t complete their first sentence without crying. There were hugs, and Kleenex tissues passed, and then—slowly—the stories came. In two situations, young women were crying because their fathers—also young—had just been diagnosed. It’s very hard to witness such grief and know and others, about the gifts that we can receive when we care for someone with Alzheimer’s: we can (and must) learn patience; we can understand, viscerally, what it means to live in the moment; we learn to adapt and—yes—go with the flow. It was these kinds of warm and very human interactions that helped make my trip so memorable.

But there was also a situation that made me angry and disappointed, and reminded me that one of the reasons I wrote “I Still Do” was to help reduce the stigma and shame associated with Alzheimer’s. This is what happened: at a local Alzheimer’s Association event where I was a speaker, I overheard a physician tell someone that he and colleagues avoided the use of the word “Alzheimer’s” when talking to families and patients who were dealing with the disease. He thought the name was “wrong” and the word frightening. So I turned to him and explained that I had a different point of view, and that I thought it was important to use the words “Alzheimer’s Disease”. I believe that the only way we can take away from the word “Alzheimer’s” its negative power is to use it casually and often in conversation and to educate people about the illness. I don’t know if I changed, or even slightly opened, his mind—but I do know I had to say something. What do you think about his comment?

November 23, 2009

Missing the Conversation

Life has a way of interfering with blogging; at least my life has. Since I last blogged, I’ve had to move my husband to a facility near our home; my book “I Still Do: Loving and Living with Alzheimer’s” has been released; I just completed a three week east coast book tour; my new photography projects have expanded and I have several gallery and museum shows scheduled. So, that’s why I haven’t been keeping my eye on my blog. But I’m trying to understand the world of social media and the part it plays in global conversations—and I believe blogging is an important way to increase awareness of the issues surrounding AD. So I will try to add blogging to my life and hope you’ll help me by adding your own stories.

In traveling and talking about “I Still Do”—to caregivers, scientist, researchers and health care professionals—I’ve observed how inconsistent training and education is and how much work needs to be done in order to get the desperately needed Alzheimer’s funding, support and resources. We all need to share our experiences and stories with our governments, our media, our neighbors, and the members of our health care communities in a global effort to help them understand the nature of the epidemic we’re facing.

I’m optimistic, because conversations are starting to take place and AD is starting to come out of the closet—but I’m also realistic, and I know this is just the beginning.

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