Tag Archives: Alzheimer’s

January 11, 2013 · 6:50 pm

25 years of Alzheimer’s advocacy in America

The Alzheimer’s Association Advocacy Forum will host its 25th national conference this year in Washington, D.C. from April 22-24. Check out this timeline of Alzheimer’s advocacy over the last quarter of a century. So many people have come together and broadened awareness of this terrible disease over the last 25 years. Certainly I know most advocates would hope we would be further along with treatment options or even, daresay, a cure, but awareness has grown greatly. Unfortunately, as Alzheimer’s cases have grown in numbers, the U.S. and the world have had to take notice and take action.

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I hope to get to attend this year. For those on a budget, registration fees are being waived in honor of the 25th anniversary. You can find out more about the event and the agenda details on the registration page.

Sometimes, caregivers and family members can feel so alone, so isolated in their family’s struggle with Alzheimer’s. Meeting others who share similar experiences can be a moving, yet rewarding experience.

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January 4, 2013 · 6:56 pm

The Memories Project on its one year anniversary

I can’t believe that I have been blogging for The Memories Project for one whole year now. I stuck to my personal goal of a blog post each day for one year, and despite the many challenges of this year, I was successful! Certainly not all the posts are award-worthy, but just the act of writing every day was quite beneficial for me. It allowed me to express some of my grief, and also kept me disciplined as a writer.

I’ve learned a great deal about Alzheimer’s and dementia over the past year. I’ve read many articles about medical studies and new treatments which offer some hope. I’ve also read many heartbreaking personal stories, from caregivers and family members who have had Alzheimer’s touch their lives. There are so many brave souls out there, who behind closed doors, deal with the demons that dementia can unleash. For many, their struggles go on silently, with no outside help.

The last photo of Dad and I together, July 2011.

The last photo of Dad and I together, July 2011.

One of my reasons for beginning The Memories Project was to showcase both the horrific and the tender moments that Alzheimer’s can create. I wanted to be a voice for others who were too overwhelmed with caring for a loved one with dementia at the moment, by sharing my own story.

The biggest reward of doing the blog has been all of the wonderful fellow bloggers I have met online. I have smiled and shed tears after reading the posts from Alzheimer’s family caregivers. While every experience is unique, there are some common issues that many of us deal with.

Now that I have spent a year telling my father’s story through my memories of him, this year, I want to turn my spotlight on to others who are dealing with Alzheimer’s in their families. So The Memories Project will continue, as I turn my attention to Alzheimer’s advocacy.

Thanks to the loyal core of readers who have joined my on this blogging journey over the past year. I so appreciate your kind comments and support.

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January 3, 2013 · 7:17 pm

Grief doesn’t necessarily get easier

When you lose a family member, well-meaning people usually say that things will get easier as time goes on.

But I don’t think that’s entirely true for everyone. Certainly, time marches on. But how one reacts to a death of a loved one, how they process their grief, well, that’s really a very individual process. I’m sure there are plenty of statistics and surveys out there that say generally speaking, people’s grief lessens after x amount of time. I think most of us know that when it gets personal, stats go out the window.

Mom and Dad in Ruidoso.

Mom and Dad in Ruidoso.

I’ve been thinking a lot about Dad lately, and that is understandable. The one year anniversary of his death was December 20th. Then it was the holidays. Certainly I have not been sitting curled up in a ball crying my eyes out with grief, but the pain still ripples through my heart. The guilt over what I would have, should have done differently still is something I’m working through.

Mom also remains grief-stricken, so I have to deal with that as well. On New Year’s Eve, she found a copy of the message she wrote in the 40th anniversary card she gave to Dad, the one she had cremated with him. While everyone else was ringing in the new year, Mom was grieving.

Tonight, she broke down again, letting me know she tells Dad every day that she loves him. Her message is always the same. She misses Dad dearly, but the way he was before Alzheimer’s. She could not wish him back the way he became with dementia.

I agree.

So for some people, grieving the loss of a loved one does become easier. For others, it may change shape and form, but it is still a pain buried deep within the heart.

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December 30, 2012 · 6:14 pm

Midnight munchies curbs Alzheimer’s wandering?

I found this article about the steps a dementia care center took to reduce the amount of middle of the night wandering by their dementia patients very interesting. The solution was simple and not nearly as expensive as medication. They simply offered the wandering residents snacks (a mix of naughty and healthy food) and the midnight snacks really seemed to curb their wandering tendencies.

I’ve written many times before about how Dad would wander at the nursing home. He was in a secure dementia care wing, so he couldn’t get outside, but he could still fall, which was the concern of the nursing home referred to in the article above.

When Dad wandered, sometimes he would have to be lured back to his room by a treat. One time it was a lollipop. Another time it was a piece of chocolate. The small bit of sweets seemed to calm Dad’s wandering spirit, at least for that night.

As the article mentions, the staff provided safe snacks for their diabetic dementia patients as well. I fully support care centers such as these that get creative in trying to accommodate their dementia residents. Offering snacks and the cleanup involved creates a bit more work than just handing out pills, but there are some centers that actually care about quality of life, versus just trying to make patients into “trouble free” zombies.

We need to encourage more of these proactive care centers in our communities.

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December 29, 2012 · 6:57 pm

Shopping trip blues

Today I had to go grocery shopping for the first time since I returned from being with Mom in New Mexico. It’s a chore I don’t enjoy, as it aggravates my vertigo which can send me into mini panic attacks. I can’t wait to exit back into the fresh air (though today it was quite chilly.)

I can’t pass the magazine aisle without thinking about Dad, and how that was his safe place, where he would kill an hour flipping through the news magazines while Mom and I did the family grocery shopping.

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That was before the Alzheimer’s. Once his mind began to fail, Dad lost all of his safe places. Reading went from Dad’s most enjoyable hobby to a foreign concept. Soon he was left with nothing but the ability to walk, to wander aimlessly with no destination and no concept of home.

Thinking about mundane tasks from a dementia perspective makes one realize that they are indeed fortunate to be able to go grocery shopping and run other pesky errands with their mind fully intact. Sometimes we truly don’t appreciate all of the little things we do to keep ourselves alive.

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December 28, 2012 · 6:04 pm

A sub sandwich jackpot

Mom is still doing well and is able to get out on her own to be around people, which is important to her to stave off depression. She still misses Dad immensely, and being so ill over the past six months has made the loss of Dad even more difficult.

She recently went to Subway, one of her favorite fast food places. Every time she goes, she has to tell me the story of how Subway played a key role in her hitting a lottery jackpot.

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It was my parents’ anniversary, and Dad was in the early stages of Alzheimer’s. He was becoming more of a homebody as the disease began to progress, as having to place orders and pay for items confused him and stressed him out. He didn’t want to go out that night, but Mom insisted. And the only way she was able to drag him out of his burgundy chair and away from a classic movie on TV was by suggesting they go to Subway. Dad loved their meatball subs.

He relented, and well, the rest is history. Mom nabbed a winning lottery ticket and Dad enjoyed his hot and tasty meatball sub sandwich. Not exactly a romantic anniversary dinner, but definitely a memorable one!

Usually Mom doesn’t order the meatball sub, as she prefers something lighter like tuna salad. But she must have been feeling extra nostalgic the other day, as she said she ordered the meatball sub for herself.

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December 23, 2012 · 5:58 pm

Home, sweet home

I finally made it back home. If I’ve learned anything over the past year or so, it’s not to take anything for granted.

I’ve always been a homebody, but after seeing Dad separated from his home in the last year of his life due to Alzheimer’s, I have a renewed sense of how important home and family and friends really are in this world.

We don’t know when disaster will strike and take us away from our creature comforts.

That lesson learned is better than any worldly possession that can be wrapped under a tree.

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December 20, 2012 · 7:07 pm

One year since Dad has been gone

It’s hard for me to believe that it has been one whole year since Dad died. So much has happened, with Mom being ill for most of this year. Through it all, I’ve thought about Dad each and every day.

Today I remembered Dad by walking along his favorite walking trail and visiting the local library, his favorite place. I will be making a donation to the library in his honor. It was an absolutely gorgeous day, and such a stark contrast to the hideous weather yesterday. Today, the skies were as blue as they could be, the sun was shining bright, and the winds were calm.

Dad and I at the assisted living facility, March 2011.

Dad and I at the assisted living facility, March 2011.

I started The Memories Project blog at the beginning of 2012 as my way to remember my father, to record memories and work through my grief. It has been a wonderful experience. From the NPR interview to all of the wonderful bloggers I have met that I otherwise would never have known, it has been truly rewarding and enlightening.

Today, I added an entry on Cowbird to mark this anniversary. It includes some priceless audio of my father singing to me as a baby. The recording is one of my most precious possessions.

While I haven’t been able to dedicate as much time to Alzheimer’s awareness as I would have liked this year, I hope to engage in more activities in 2013.

Thanks to all of you who take the time to read about someone you’ve never met. Dad would be so proud to know that he is making a positive difference in the world.

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December 19, 2012 · 7:21 pm

Howls of Alzheimer’s

It was a brutal, ugly weather day where my mom lives. The wind howled like a banshee all through the night and into the day. The wind was sustained at 40 mph, and geared up to 60 mph gusts at times. It left me feeling unsettled and on edge all day long. I set in the living room and in the chair that Dad spent most of his time in when he still lived at home. I watched the thin trees take a beating. They bent, but did not break with the vicious wind gusts. It was a miracle of nature to me.

At one point, blowing snow whipped its way through the sky.

Even though I avoided going out in the windy weather, I felt like the wind symbolized the battering my family has taken over the last year. And the howling made me think back to my Dad’s nightmares, and the sounds I would hear at the nursing home Dad spent the last year of his life in.

Perhaps we were lucky that Dad mainly became mute as his Alzheimer’s progressed, and there were no verbal tirades or helpless cries that some families have to endure.

Those howls and moans of souls trapped by the cruel disease of Alzheimer’s. It is a sound one can never forget.

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December 18, 2012 · 7:18 pm

Fleeting moments of connection

I read a moving blog post today about someone with Alzheimer’s who pleasantly surprised their family caregiver with a rare moment of lucidity. They were able to express their love verbally before Alzheimer’s moved back in and took the light out of their eyes, returning them to a glassy, blank stare.

For most of us, these lucid moments are few and far between.

This made me think about the last lucid interactions I had with my father. He was at the point where he was barely able to verbally communicate. He would sometimes be able to utter a few words that made sense, but most of the time, he carried that sad, faraway look in his eyes. But I remember that moment so clearly in the hospital room, when Dad’s eyes lit up with recognition while I was holding his hand.

“Oh, there you are,” he said, as if startled by this temporary retreat into reality.

“At first I couldn’t see you but now I can,” Dad said with a wan smile.

I knew that was the moment to say what was burning in my heart. “I love you Dad,” I said, slowly, clearly.

“I know you do,” Dad said. Then he began to drift away from me, back into the isolating world of Alzheimer’s.

But it is the moment of love that I remember the most.

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