Tag Archives: dementia

January 21, 2013 · 8:04 am

Day of service for dementia

Today, in addition to the presidential inauguration and the federal Martin Luther King Jr. holiday, is designated as a day of service. In the spirit of MLK, everyone is encouraged to go out into their communities and help those in need.

Participating in events like this can be difficult if you are a full-time family caregiver. Certainly when you are caring for someone with dementia, they cannot be left alone for even a minute. And while those in the early stages of Alzheimer’s might be comfortable attending a day of service event, others might feel overwhelmed. Financially, things may be difficult as well, so financial donations may be out of the question.

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My feeling is that as caregivers, we are providing a day of service EVERY day. So don’t feel guilty if you can’t actively participate today.

There are volunteer opportunities with the major dementia organizations. There are many more volunteer opportunities on a local level. Do what you can. Promote the needs of the Alzheimer’s and dementia communities as best as you can.

The most important thing is to have a voice for those who can no longer express themselves.

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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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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 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 16, 2012 · 7:20 pm

Connection between loneliness and Alzheimer’s?

I read an interesting study today that suggested there may be a connection between loneliness and Alzheimer’s. What was most interesting was that it was those who felt lonely versus those who lived alone but didn’t express feelings of loneliness that had a higher incidence of Alzheimer’s.

It was a surprising result to the researchers. I’ve read numerous studies about social isolation leading to everything from dementia to depression. I wonder if these studies have some inbuilt bias towards extroverted people. There are some people who need constant company or they feel lonely; others can interact socially with people once or twice a week and be perfectly happy.

I’m not sure if Dad felt lonely before Alzheimer’s set in. Dad certainly had a passion for “alone time” activities like reading. He also had a solitary job as a security guard for many years. So like me, he was comfortable being alone and entertaining himself. Did he yearn for more socializing? That I will never know.

But what is clear to me is that once Alzheimer’s took hold of my father, he was whisked away into an isolating world, where we really could no longer connect with him in a meaningful way. And I saw that same isolation play out on the faces of every patient in the dementia ward of the residential facility where my dad spent the last year of his life. I remember so many residents reaching out, touching my arm, trying to communicate with me, hoping to make some kind of human connection. I often felt like I let them down when they shuffled away after an awkward, confusing exchange.

I hope there are more studies investigating social isolation and dementia, and I hope they take into account that both introverts and extroverts exist, and that the definition of loneliness is different for every human being.

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December 11, 2012 · 7:07 pm

Cheap cologne sets a reminder of Christmas

I had the misfortune of finding myself shopping in Walmart today. Mom wanted to stock up on some things prior to surgery, so she wouldn’t have to worry about it when she is released from the hospital after her surgery.

Any kind of giant store like Walmart makes my vertigo go crazy. The entire store is sensory overload, and then there’s the constant dodging of other customer’s carts. Mom went to get her hair done so I was left alone to shop. (And if you’ve ever shopped with an elderly woman, you know it’s preferable to shop alone!)

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As I sped through the Christmas gift section, to get from the pharmacy department to the grocery side of the store, my gaze picked up a gift box of men’s cologne. It immediately gave me a pang in my heart. Every year, I would buy Dad one of those box sets of cologne. I would usually get Stetson or Grey Flannel. It was an easy to select gift that I honestly never put any thought into. Dad wasn’t into presents, so he never asked for anything specifically. I didn’t want him to feel left out so I tried to get him almost as many gifts as I would get my mom, who would gush over every little cheap trinket I would get for her.

Dad always seemed to appreciate the cologne, even if all he did was mumble a thanks when he opened it. He definitely used it every day, and the scent of men’s cologne will always remind me of my father.

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December 4, 2012 · 9:14 pm

Gifts for those with dementia

I was reading this blog post today about gift ideas for loved ones with dementia. The holiday season can be awkward when you are trying to accommodate those with Alzheimer’s and dementia. I think often, we as family members go to one extreme or another. We either bombard the poor souls or we pretend they don’t exist. As usual, the solution is somewhere in the middle.

First of all, there is no “one size fits all” solution. Each person with dementia will react to the holidays in a different way. For example, Dad was never sentimental about the holidays and his interest didn’t change once dementia took hold. I did buy him a personalized New York Times edition from his birthday and birth year once he was in about the mid-stages of Alzheimer’s. I wish I had bought it for him sooner. I believe he was able to look at the pictures but I believe his reading ability was limited by that point. It was a gift I had meant to buy years earlier, for Dad loved newspapers and history.

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So one has to try to relate to their family member with dementia as much as possible. I think generally speaking, low-key, small gatherings are best, because they don’t stress out a dementia sufferer with too many unfamiliar faces and too much commotion. But again, I heard a story recently about a woman who suffered from dementia and who had loved to cook the big holiday meal before dementia took over.

So what did the large, extended family do? They each made a dish from one of her recipes, and pretended that she made it herself. The little old lady took her place at the head of the table, wiped her brow and exclaimed how tired she was from all of that cooking before digging in. The new tradition went on until she passed away.

Sometimes gifts don’t come wrapped in paper and bows. They are recreating memories of a loved one and sharing in the joy of those happy times.

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December 2, 2012 · 7:42 pm

The little things that can make one’s day

So Mom would probably be mortified if she knew I was revealing this to the world, but it really is something that a lot of caregivers can relate to.

Today, all I wished for was poop.

Mom has a colostomy and after spending a week in the hospital, mainly on a liquid diet, her stoma had “gone asleep” in a manner of speaking. The medical staff warned us it might take a day or two to get things going, but after three days of solid food, Mom was barely outputting any stool. And that in turn was making Mom very sick. (Imagine how you feel when you are really constipated.) I feared another ER visit was in our near future.

But today, angels might as well have sounded from the heavens. Mom had stool in her colostomy bag! Yay for us! Our home care nurse was just as excited, and pointed out how when you are a caregiver, you have to enjoy the small victories in the face of illness.

That’s very true. I remember during Dad’s steady and steep decline into dementia, we would be happy if he was just able to eat, and didn’t have a fall in a day. It’s difficult to believe that one could take pleasure in the face of decline, but if you only focus on the negative, it will swallow your soul whole. I’m the ultimate pessimist, but even I recognize the joy of my mom being regular again. It keeps us out of the hospital, and out of the Grim Reaper’s grasp for a little while longer.

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November 30, 2012 · 8:19 pm

Dad vs. Mom in the hospital

It’s impossible for me not to compare my parents and their completely opposite experiences in the hospital. Of course, there are many reasons for the extreme contrasts. Dad had a mental illness, Alzheimer’s, which dominated any physical ailments that he suffered from. So for Dad, hospital experiences were muted. Sometimes, the physical symptoms could be treated with medications and procedures, but there was no cure for the disease that was robbing his mind. Luckily, he was not an aggressive dementia patient, but he was a shadow of his former self. The nurses and other caregivers that took care of Dad on his numerous hospital visits seemed to be able to see beyond the current shell of a man.

But unlike Mom, Dad never received the high fives and accolades that Mom has, as she recovers from surgeries and other medical setbacks. I thought about that again today, as Mom was wheeled out of the hospital by a nurse. She has developed a hernia from her surgical procedure back in July. She will need to have surgery in the next month, but for now, she can go home. People waved and cheered as she was rolled down the hallway, towards the front door to freedom.

While Dad was never violent, due to his dementia, he could not be a fully cooperative patient. Mom on the other hand is every nurse’s dream. Charming, funny, and always wearing makeup, she is the bright spot in what can be otherwise dreary days for healthcare workers. Mom may be battling physical ailments, but mentally, she can still delight others.

Just like Dad used to be able to do, before Alzheimer’s robbed him of his personality.

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