Tag Archives: dementia

A memory on a postcard

Today I want to highlight a nonprofit organization that I just stumbled upon. They’ve been around since 2009, so many of you may be familiar with them, but I wasn’t. The group is called The Spaces Between Your Fingers Project and the group writes memory snapshots for people with Alzheimer’s that are recorded on postcards and sent to families. The service is free, and a copy of the memory postcard is kept in the Free Library of Philadelphia for archiving purposes. The organization has collaborated with the Alzheimer’s Association in the past. The group also has set up an online tool that allows anyone to record a memory postcard, whether they have dementia or not.

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I love this concept, it is so unique and is a great way to encourage people to record family memories. If you are wondering what “the space between your fingers” means, there is a lovely storybook on their site that takes you through the very touching tale inspired by the founder’s grandfather. You may look at Alzheimer’s in a whole new light.

I plan on giving the service a try soon and will share what I create.

What is the first memory from your life that you would want to preserve?

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Today would have been Dad’s 82nd birthday

Today would have been my father’s 82nd birthday. He is so missed each and every day, but I am thankful that Alzheimer’s didn’t keep him trapped in a diseased world for any longer than it did.

But today is a reminder of why I have become an Alzheimer’s awareness advocate. I have become a more compassionate, aware person thanks to my father. To honor my father, and to help those who are going through the same thing with their own parents is now part of my life’s mission. I can no longer give my dad birthday gifts in this world, but trying to make a difference and battling the terrible disease of Alzheimer’s is a gift I will continue to give for the rest of my life.

I’ve posted this before, but I want to share again this montage of photos and my dad singing to me when I was a baby.

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Reimagining the simplest things

I’ve finished reading my advance copy of Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias and I am deeply moved by the brave and loving stories shared in this collection. As we approach the release date of April 22, 2014, I will be blogging about some of the stories that I found particularly touching.

CSS Living with Alzheimer's & Other Dementias

One such story was about a man who had been married for many, many years to the love of his life. Once his wife was diagnosed with Alzheimer’s, he tried his best to adapt their lives to deal with the disease. One area where his wife really struggled was with telling time. For those of us who have dealt with Alzheimer’s in our own family, we are all too familiar with the “clock test” and how that is used as one marker to determine a person’s cognitive functioning. My dad never took the test that I am aware of, but my mom did. My mom does not have dementia, but when she developed cancer, she was so ill that she stopped eating and her potassium levels dropped dangerously low. This can impact cognitive functioning, and boy, did it ever. I watched my mom struggle to draw that clock, and I thought my mom was facing the grim future of my father. Fortunately, her cognitive function was restored once her illness was treated.

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But back to the story. After the wife repeatedly asks the husband in the span of a short time when dinner is, the man puts on his thinking cap. Knowing that she cannot tell time now by a traditional clock, he sets out to recreate the tool we use to tell time. He removed the second hands and the minute hands, leaving only the hour hand moving. He then places a piece of tape above the hour they are going to eat. With the simplified version of his clock, his wife can now understand when their next meal will be, relieving a bit of stress for both of them.

Will there come a time when his wife will not be able to understand even the reconfigured clock? Probably. But the love and wisdom shown in the husband’s actions will definitely withstand the test of time.

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If only Alzheimer’s was a cruel April Fool’s joke

If one had to pick a holiday to associate with Alzheimer’s, it would definitely be April Fool’s Day.

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Our loved ones with early to middle-stage Alzheimer’s often appear so normal, just how they’ve always looked to us. (During the latter stages of Alzheimer’s, the physical symptoms of the disease tend to be more readily apparent.) But then they open their mouth, or don’t respond to their name, or don’t recognize that you are their loved one, and it is like the cruelest April Fool’s joke in the world.

If only our loved ones were pulling off such a prank, and could snap back into their old selves while laughing and shouting, “April Fool’s!”

As I’m reading the wonderful stories in the upcoming “Chicken Soup for the Soul Living with Alzheimer’s and Other Dementias” book, I found two Alzheimer’s-related behaviors that fascinate me. One relates to April Fool’s in that humor can still be found in the Alzeimer’s experience. Often it is unexpected or unintentional humor, but it is there if you seek it out. The other is the way the disease works on the brain and how people with even mid- to latter-stage Alzheimer’s can sometimes have a lucid moment. Time and time again, people described how it was like a veil was lifted, or the fog dissipated, albeit temporarily. I remember experiencing this with my father, and what precious moments those were for me.

But then Alzheimer’s would cry, “April Fool’s” and my dad’s mind would be lost in the fog of dementia once again.

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Building community to prevent dementia-related tragedies

This story out of Alabama is tragic on so many levels. Neighbors called police to perform a wellness check on an elderly couple, one who has dementia. The neighbors reported not seeing the couple for months. When the police arrived, they saw the woman who has dementia moving about the home. Through a window they could see her husband, clearly deceased, on a bed. When the police gained access to the home, they found the woman with dementia in poor health, and two dogs that they believed starved to death. Authorities believe the woman lived with her dead husband in that home for at least a month.

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We must strengthen our communities to prevent heartbreaking tragedies like these from happening. In our modern society, it seems we have discarded a true sense of community. I keep to myself and do not socialize with neighbors; I live in a big city and while the neighbors seem harmless enough and I speak to them in passing, urban life tends not to encourage close neighborly relations. I did spend an hour tracking down my neighbors across the street to let them know they had left the trunk of their car wide open, so I’m not completely cold-hearted. I work from home so I naturally observe the routines of my neighbors. If I knew I had a neighbor with dementia, I think I would pay more attention. Of course, people have a right to privacy so communities can’t advertise who has dementia even if it is to provide assistance.

I’m not sure what the answer is but there does need to be more safety nets for our elderly population. Not everyone has children or a group of close friends or family members to check up on them. We shouldn’t let these people fall through the cracks, and end up in tragic situations like what occurred in Alabama.

Does your community offer any programs that check-in on seniors to make sure they are safe?

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My story will appear in “Chicken Soup for the Soul Living with Alzheimer’s & Other Dementias”

I am very excited to announce that a story that I wrote about my father, called “French Toast,” will appear in a special edition of the popular “Chicken Soup for the Soul” series. This edition features stories about living with Alzheimer’s and other dementias and is a joint project with the Alzheimer’s Association. All royalties from this special edition will go directly to the Alzheimer’s Association. The book will be released on April 22, 2014.

CSS Living with Alzheimer's & Other Dementias

I am thrilled to be a part of this upcoming book, especially for a publisher as popular and well-respected as the “Chicken Soup for the Soul” folks. From thousands of submissions, 101 stories were chosen to appear in the book. I look forward to reading all of the inspirational stories.

If you’re wondering how I came about submitting my story, it was really just by chance. I was doing my daily “looking for paid writing gigs” web search and was on the Work-at-Home Moms website. Now I’m not a mom (unless you count the pets) but I find that their website sometimes posts opportunities I don’t see elsewhere. It was on their website that I saw the “Chicken Soup for the Soul” callout for Alzheimer’s and dementia stories. I said to myself, “Why not?” I submitted two stories: a depressing one and a funny one. The funny one was accepted. :)

One of the main goals I had in mind when starting The Memories Project blog was to raise awareness, not just for Alzheimer’s but for family caregivers as well. I’ve virtually met so many wonderful people through my modest but loyal following. The dialogue we have has educated and inspired me and lifted my spirits. Yet I know so many others are struggling silently and I hope by being able to get out the word on a larger platform, more people can get the support they need.

To prepare for the upcoming release of the book, I’ve added a couple of pages to my blog: media appearances and publishing credits. If you or someone you know would be interested in a copy of the book, an interview or a guest blog post, feel free to contact me directly at joyjohnston.writer@gmail.com.

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Preparing for a new year

As the old year winds down, many of us judge ourselves too harshly. Which new year’s resolutions did we fail to keep? What goals did we come up short on meeting?

And then we go and make new resolutions and goals and start the cycle all over again.

I’ve actually been feeling guilty about my shortcomings this year for awhile now. I’ve always been my harshest critic.

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I’m disappointed that I haven’t been able to build a more lucrative freelance writing career this year, when I’ve been working from home full-time. I have one main writing gig right now, but it doesn’t pay nearly enough to pay the debt I accrued during Mom’s illness last year. The job market is tough, and I have been humbled and educated. So far, I’ve landed a few interviews but no job offers. I hope to be starting 2014 on a positive note because I have a job interview scheduled for the first week of the new year.

As for writing goals, I’ve pretty much met my goal of writing on this blog a couple of times per week. That includes reposting other people’s blogs, which I want to continue to do in the new year. The first year of The Memories Project, I focused on personal memories. This year I focused on awareness and activism. I’m still working on next year’s theme, but my general goal is to focus even more on the hopes, struggles and successes of other families dealing with dementia.

I think where I’m most disappointed is the novel. After Dad died, I had started working on a novel and had a pretty substantial outline developed. I even pitched the concept at a writer’s conference. Then Mom got sick. The agent I pitched the memoir concept to stated that the memoir market is oversaturated and I might want to consider converting my idea to fiction. I’ve had a whole year now to mull a new concept and I still haven’t fully formed a solid new outline, let alone written a complete novel like I had hoped. In 2014, I hope to complete that outline and begin novel writing in earnest.

On a positive note, I’ve written several poems and short stories and submitted them for publication. Have any of them been published? No, but I did get an anecdote about my mom included in an anthology, so I’m counting that as a publication credit!

I’m also disappointed that I didn’t do more to actively support Alzheimer’s awareness. I missed the local walk and I didn’t volunteer at a local nursing home like I wanted to. I did faithfully write to my congresspersons when Alzheimer’s-related funding bills were on the table. I’m also an active member of the Alzheimer’s Prevention Registry.

What are you most proud of this year and what do you plan on working on next year?

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Two years since Dad died

It’s hard to believe that today marks the second anniversary of my father’s death. My grief is still pretty raw, yet the person I was back then seems like such a distant memory. So much has happened, both good and bad in the two years since his death that it almost seems like another lifetime.

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The weather is dreary, much like the day he died, though at least there’s not a cold rain. In fact, it’s unseasonably mild, making it ideal walking weather. So I took a long walk on my neighborhood’s walking trail, something Dad would have enjoyed. Then I stopped for coffee, another of Dad’s favorite things. I made a donation to the tribute fund for Dad through the Alzheimer’s Association. I’m dedicating the day to writing about Dad and promoting Alzheimer’s awareness. I’m listening to the Bing Crosby channel on Pandora while I write. They are playing so many of Dad’s favorite songs.

One of my favorite photos.

One of my favorite photos.

I’ve also started a Tumblr to vent about the rocky road of caregiving. Feel free to check it out, it’s called The Caregiver Vent. Warning, because it is a vent, it is uncensored so occasionally profanity is used. If you’re on Tumblr, let me know.

What I’ve learned over the last couple of years is that it is the effort we make in taking care of our loved ones that matters more than the results. Even the most skilled caregiver in the world cannot clear the confusion of a dementia patient. Those with dementia may not recognize their family caregivers. What it comes down to is you being able to live comfortably with the actions you take as a caregiver. You will make mistakes, we all do. Just try to avoid making poor decisions that will haunt you. And above all, be forgiving. Of others, and of yourself. I’m still working on that last one …

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Wandering man with Alzheimer’s mistaken for intruder and killed

In my local newspaper there was a sad story about a man with Alzheimer’s who wandered away in the middle of the night and walked a few miles from his home. He ended up at the front door of someone’s house at around 4 a.m., where he proceeded to ring the doorbell multiple times and turned the doorknob. The residents, who had just moved into the home recently, were understandably freaked out and did the right thing by calling 911. But then the male in the house did exactly the wrong thing. He stepped outside with a gun and when he saw the approaching figure, who was now in the yard, he told the person to stop. The person did not obey his orders and kept coming towards him. The resident shot the man in the yard and killed him.

crime tape

Once the resident discovered that the intruder was actually an elderly man with advanced Alzheimer’s, he felt great remorse. Of course, the family of the man with Alzheimer’s also have to live with the violent and senseless way their loved one died. The police have not charged the man with gun yet, saying while it was foolish to go outside, he did not break any laws.

It’s a sad case all around but one that I unfortunately can see happening more in the future. It is easy for those who have never cared for a loved one with Alzheimer’s to criticize the family for allowing him to escape into the cold night, but we know how difficult it is to keep watch over someone with dementia 24/7. And those with Alzheimer’s may not be cooperative and act odd, even violent, scaring a stranger into taking drastic measures in order to protect themselves. Anti-gun advocates will want to blame weapons in the home, but it still goes back to the person and how they react in a situation.

I think about the several times my dad wandered off and how he could have ended up like this gentleman. It’s a sobering lesson for all of us.

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Reduce antipsychotic drug use in dementia patients by using another drug?

The rampant and dangerous use of antipsychotic drugs to treat dementia symptoms in elderly patients has been in the spotlight recently due to Johnson & Johnson being hit with a $2 billion fine for the false marketing of Risperdal. Could the answer to this disturbing trend be yet another medication?

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A drug called Pimavaserin is undergoing a trial right now to examine its safety in treating Alzheimer’s disease psychosis. Currently there is no medication on the market that specifically treats this condition, and we’ve seen the consequences of the off-label use of other antipsychotic drugs. I saw what Risperdal did to my father and readers of this blog were vocal about their concerns in properly medicating those with dementia.

One would hope that a medication can be created to ease the mental and emotional suffering of dementia patients without turning them into walking zombies.

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