AlzHub

2006 Alzheimer's Association Memory Walk Los Angeles

The Memory Walk was a huge success again this year.  They announced that this walk alone had raised over $500,000 and counting.  I won't even attempt to estimate how many people were there, let's just call it "thousands".

I'm guessing, but the Los Angeles walk has got to be one of the largest of all the walks held around the country.  The actual walk part was supposed to be 3 miles but it couldn't have been much more than a mile. 

There was live music, information booths from various companies and organizations and some food.

Since this is Los Angeles, there were also celebrities.  Celebrities whose lives have also been affected by Alzheimer's.  They come out year after year to take part, help raise money and to cheer the rest of us on.

Thanks to everyone invovled.

And now, the photo's:
(Click the images for larger versions)

Celebrities leading the walk.
L to R: L.A. County Supervisor Yvonne Brathwaite Burke, Rafer Johnson,
Ron Rifkin, Shelley Fabares, Steve Edwards, Leeza Gibbons, Bryan Cranston,
Victor Garber, David Hyde Pierce, Bob Goen.

Start of the walk.

Walking along the infield of Hollywood Park.

Walking along the water.

and what would an event be without dancing...

More celebrity images:

Bryan Cranston

Leeza Gibbons

Shelley Fabares

Peter Gallagher

Rafer Johnson

Ron Rifkin

Victor Garber

Steve Edwards and David Hyde Pierce

Memory Book

Mom always liked reminiscing about things she remembered from years ago, especially her parents, sisters and the house my sister and I grew up in.

Like most Alzheimer’s patients, mom’s long term memory was pretty good while her short term memory was very bad.  But sometimes even the people, places and events from long ago would get mixed up. 

One day, while looking at online photo printing services, I saw that one of the products they offered was a photo book.  What a great idea.  I could get some photos together and make mom what I called a Memory Book.

I went through all our family photo’s and picked out some of her parents, her sisters, dad, their wedding day, relatives that we saw all the time, our old house, pets, etc. and put them all together in the book and labeled them so she could always read who and what they were even if she couldn’t remember.  I even put them in chronological order as a guide to when things happened even though I wasn’t sure she’d notice.  I thought maybe on some level that would help. 

The book was a hit.  When mom asked about someone or something that was in the book, I could bring it out and we’d look through it.  It never failed to bring a smile to her face.  Being able to see the photo’s really helped her memory too.  When she saw the photo's she remembered names of people that I had forgotten.

Of course, when she put the book away in a drawer, she’d forget about it.  Out of sight, out of mind.  But I was always able to find it pretty quick.  We were able to spend a lot of time looking through that book together.

--I made and purchased my book (typically called photobooks on the websites) through Shutterfly.com.  The quality was very good.  Now that mom’s gone, that book means a lot to me.  There are several other online photo printing services that have something very similar such as:  KodakGallery.com, Photoworks.com and Snapfish.com.

Technorati Tags: Reminisce, photo book, memory book, photos, photography

Merry Christmas 2005

I'd like to wish everyone a Merry Christmas and offer a little advice for today.  If you are going to be spending the holiday with someone with Alzheimer's, remember that, like everything else today, moderation is the key.

Whether you stay at home and have people over or you take your loved one out somewhere, what is fun and relaxing to you can be confusing and disorienting to someone with Alzheimer's disease.

Have fun, just be aware and try not to overdo it.  By including someone with Alzheimer's in your holiday activities, that is a far better gift than anything you could buy in a store. 

Merry Christmas!

Memory Tree

In times of loss, good friends can make all the difference.  Just knowing that they are there with support and that they care about the things that matter to me.

Some friends surprised me recently with an offer to plant a memorial tree in moms honor in a local park.  What a great idea.  A living tribute in the town we called home for so many years.  A way for me to visit with her since she's buried out of state with her husband of 51 years.  A tree that will grow big, provide shade and beauty for many people and be there long after we are all gone.

The tree was planted last Thursday:

I can see mom's smile now.  I know she would have loved it.

Alzheimers Association 2005 Memory Walk Donations

The Alzheimer's Association Memory Walk for 2005 here in Los Angeles is being held on October 22 at Hollywood Park.

If you have the time and want to help raise money for a good cause, I encourage you to sign up for a Memory Walk in your area.  If you can't make it to a walk, at least consider making a donation for the cause. 

You can make a donation directly on the Alzheimer's Association web site or if you know any individuals (like my site here at "AlzHub"), groups or teams participating in a walk this year, you can show your support for them through a donation to the Alzheimer's Association.

Unfortunately, it doesn't look like I'll be able to walk this year since I just started a new job.  They've been very generous with bereavement time recently and I don't think I should push my luck by asking for even more time off.

That doesn't mean I can't help with some fundraising (and donate some myself) for this years Memory Walk in Los Angeles.  I've set up a direct link in the upper right hand corner of this site to a Memory Walk donation page in memory of my mother.  Check it out.  The Donation page is through, and all money goes directly to, the Alzheimer's Association.

Help fight the fight against Alzheimer's disease.

Links:

Alzheimer's Association.

My Memory Walk 2005 donation page.

Memory Walk 2005 home page.

Mom

This is the post I didn't want to write.

My mother passed away suddenly this past August.  I had prepared myself for The Long Goodbye so this was unexpected.  Luckily we were able to be there with her at the end.  My sister stood at one side of the bed holding her left hand, I stood on the other holding her right.

My mother set an example that will be difficult to follow.  The way she lived her life, the way she faced adversity and the way she treated others.  She made an impression on people that led to many long term friendships. 

The Alzheimer's slowed her down, but it couldn't touch the core of who she was.  The more it peeled away at her memories, the more her positive attitude, appreciation of the simplest of things and concern for others over herself shone through.

I got to spend a lot of time with her these last three years.  Visiting her, helping her, taking her on outings.  I also became responsible for her.  Looking out for her and taking care of all the things she was no longer able to do herself.  I hated the disease and loved her.  At times it was difficult, but I'd do it all again in a heartbeat if she needed me.

The way she lived her life will always be a guide for how I live the rest of mine.

This is why there haven't been any updates here for awhile.  I took some time to grieve, took a step back, handled the details that needed to be handled in a time like this.  I took some time to breathe. 

I'm ready to get back to research and providing information.  Mom's fight against Alzheimer's is over, but mine isn't.

Life With Alzheimer's #1

I like reading encouraging and uplifting stories about how people deal with Alzheimer's disease. 

Stories that are about someone dealing with the disease themselves, loved ones dealing with someone else with the disease or, best of all, people dealing with issues that come up together.

Stories about people who, when the going gets tough, don't run the other way.

Stories that renew my faith in love, humanity and the willingness of people to help others.

Stories that we can learn from.

I've linked to stories like this before but I want to make this a regular, periodic part of this site.

If you come across stories, or have stories of your own that you'd like to share, feel free to send me an email.
---------------------

And now, Life With Alzheimer's #1:

This is a story about a married couple, Mary and Darrell, and how they have dealt with Mary's memory loss.

"But seeing the married couple so long ago is only part of the reason for pause. The rest has to do with the writing on the picture.

''Mom'' is written low over Mary's dress.

''Dad'' is written on Darrell's left arm.

At almost any other house, this would surely be the work of a child who got carried away with a pen.

Not here, though. Mary wrote the words a couple years ago.

She simply didn't want to forget her husband.

Or the woman she used to be."

Click here to read the complete article by Scott Patsko from the Morning Journal in Ohio.

Happy Birthday Mom!

Celebrated moms birthday last week.  With Alzheimer's, you can never be sure how someone will react to a situation, like a birthday party.  Luckily, you can learn from past experiences and make adjustments as you go along.  Moms last two birthdays provide a good example of this.  For those not familiar with Alzheimer's, these examples are pretty typical.  For those with a loved one with Alzheimer's, this will probably all sound familiar.

A year ago, it was moms first birthday after moving into the assisted living home.  My sister and I wanted to do something special for her so we asked if they could make a cake, we reserved the small private dining room off the main dining room, we had lots of little party favors and balloons for everyone and we had the women mom normally sits with for meals join us as guests.

The cake was a highlight.  The best birthday cake I've ever seen.  We were expecting a small cake big enough for our little group, but they brought out a huge decorated pineapple cake that even had rose petals from the garden sprinkled across the top.  The cake was big enough to feed every resident and staff and then some.  Amazing. 

Everyone had a good time.  We ate, sang happy birthday, played with the party favors and mom opened a couple of gifts.  Part of the time mom knew it was her birthday. Part of the time she wasn't sure who's birthday we were celebrating but she was enjoying herself anyway.  After the party, we walked mom to her room.  We visited there for a while and when we left for the day, everything seemed great.

You never know how problems will manifest themselves.  The party must have been too much and left her overstimulated and agitated.  She called several times a day angry because she wanted her car or she needed a ride home (referring to a place my parents had moved from about 15 years earlier).  She needed to get dinner ready for her husband (who had passed away a few years ago) and even insisted that her parents were expecting her to visit.  This went on for about 3 days before she calmed down and things got back to normal.

We learned our lesson.  The next birthday would be much more low key.

This year I decided to take mom out for lunch.  This would allow us to get out for her birthday yet keep things pretty routine since I take her out to lunch almost every week anyway.  I also stopped on the way and picked up a couple of cupcakes (instead of a cake) so we could have something when we got back from lunch.   I brought a candle to put in her cupcake ready to sing happy birthday to her but she wanted to skip all that and just eat the cupcakes.  So that's what we did.

As mom walked around, the other residents wished her a happy birthday.  The staff wished her a happy birthday and gave her a hug as they saw her.  They taped a happy birthday sign and some balloons to the window near moms seat in the dining room.
My sister visited her separately to wish her a happy birthday. 

This year went much better.  We were able to celebrate her birthday, others got involved, and we kept it at a level that mom could handle.  I visited her a couple days later and didn't notice any changes in her behavior. 

It's like the subtitle of my site here says: "A learning experience".  Things are always changing.  You take in as much information as you can, learn from it, adapt and do the best you can.  I guess my goal is to keep her safe, help her to live the best life she can and allow her to push her limits when she wants to. 

Happy Birthday Mom!

Alzheimer's Talking Point Forum By The Alzheimer's Society

The Alzheimer's Society (the UK’s leading care and research charity for people with dementia, their families and carers) is providing access to an Alzheimer's forum about the disease and related aspects.

From the Alzheimer's Talking Point forum website:

The aim of this discussion forum is to share information and experiences about all forms of dementia. It is available through the Alzheimer's Society website but is run and hosted by discussion forum members themselves.

Like a support group, the forum provides a place for people suffering from Alzheimer's and their caregivers to ask questions, learn about resources and support options, ways to raise awareness and, most importantly, talk about what is happening and have someone listen.

The forum has over 1,000 members from all over the world and offers an amazing amount of information.  I read through some of the posts and there were comments on so many of the things that everyone asks about at one time or another.  Things like guilt, when is it time to move into a home, how to find a good home, emotions, wandering, etc.

Check it out.

Link:

Alzheimer's Talking Point forum - The Alzheimer's Society

Alzheimer's And Going With The Flow

"By the time I awoke to the reality of her illness, I had completed graduate training in theater studies. I would never have guessed that the degree I earned would prepare me for a decade of dementia."

This is a section of an article that was on HoustonChronicle.com on May 15, 2005 written by Elinor Fuchs. 

I wanted to point this article out because I think it illustrates very well an aspect of dealing with someone who has Alzheimer's disease.  One of the hardest things to adapt to is that you can't expect or force someone with Alzheimer's disease to live in the same world you do.  They don't understand or process information like they used to.  Their reality is different.  Their past and present collide and it all seems the same to them.

The author realized that sometimes the best thing to do is to join them in their world for awhile.  Call it role playing or just going with the flow, it does take some practice.  But it's worth it.

If it makes my mom happy to believe that she went to a party last night or that she visited her parents this morning, then that's not necessarily a bad thing.

Link to full article:

Alzheimer's: the final curtain - HoustonChronicle.com