Is the media misleading the public on Alzheimer’s?

It seems to be a mixed blessing that the media is paying more attention to Alzheimer’s.

On the one hand, the spotlight on a disease that has long been kept in the shadows is welcomed. But modern journalism’s need for clicks sometimes leads to misleading headlines, which only hurts the awareness movement.

Brain

Recently, a study came out which demonstrated in a very small sample of autopsies of 8 people who had been diagnosed with the rare brain disease, Creutzfeldt-Jakob disease related to growth-hormone treatment, 6 of the 8 showed an increase in amyloid plaque that scientists believe is linked to Alzheimer’s.

It is certainly an interesting study, and the results were unexpected, but there are not any solid takeaways until larger studies can be performed. Yet, in the click-crazy world of online journalism, some outlets ran with the headline, “Is Alzheimer’s contagious?”

I’ve read accounts from those with Alzheimer’s who criticize the use of the term “Alzheimer’s sufferer” because they are doing their best to live successfully with Alzheimer’s and sufferer sounds like there is no hope with anyone with the disease.

I might be guilty of using the term “suffering” when describing my Dad’s experience with Alzheimer’s, but that’s because I truly believe he was suffering. I don’t think it should be used as a blanket term, especially for those in the early stages of the disease.

As a journalist, I try to be aware of these considerations, but I encourage everyone to politely correct those who provide misinformation on Alzheimer’s or any other disease.

The old expression of “all publicity is good publicity” may be true for Alzheimer’s, but it is the responsibility of advocates to make sure the coverage is accurate.

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The Parentless Daughter

Jodi’s post captures much of what I’m experiencing now, just over three months since my mother’s death, and coming upon the 4th anniversary of my father’s death in December. I’m sure others will be able to relate to this as well.

Source: The Parentless Daughter

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Finding caregivers where you least expect it

I was dreading going to my dental cleaning appointment for multiple reasons. I always dread these appointments because I’m not fond of the forced chatter, especially when there are instruments in my mouth!

The main reason I was dreaded the visit was because the last time I was there, my mother was headed to the emergency room for the last time. I was already on my way to the dentist when I received my mom’s call, saying she couldn’t stand the pain anymore. I remember texting my mom’s personal caregiver from the dentist’s chair. I didn’t tell the staff about the caregiving crisis I was dealing with at the time because frankly, it was none of their business.

Photo: Freeimages.com/Olaf Knauer

Photo: Freeimages.com/Olaf Knauer

I remember sitting in that dentist’s chair over the next hour, my heart pounding, but not for fear of the tools buzzing in my mouth. After all of the ups and downs with my mom’s health over the last couple of years, was this finally it? The real beginning of the end?

In my heart, I knew it was, and it terrified me.

The very next day, I left for New Mexico to be with my mother.

I always have the same dental technician who does my cleaning. She asked the obligatory “how my summer was” question, and instead of just glossing over the question and telling a little white like like I would normally do, I told her the truth. My mother had died, and I had spent the summer dealing with post-death tasks.

She offered her condolences and asked what caused my mother’s death. When I told her colon cancer, she began telling me about her own caregiving experience that she is going through with her father-in-law.

Some of her experiences were similar to mine, in that her father-in-law’s tests came back fine, until he was diagnosed with Stage IV colon cancer. (My mom was diagnosed with Stage III.) He actually collapsed in the emergency room, and that’s what finally forced doctors to figure out a diagnosis.

She said they chose to move him into their home, so they could help take care of him and so that her husband would get to spend extra time with his father. She talked about the guilt her husband felt for not being able to help his dad more, and sooner, something I can totally relate to from my caregiving experience.

The conversation made me think about how many people we come in contact with in our daily lives that are also in a caregiving situation. It’s probably more than we imagine. If I hadn’t opened up, I would never had known that my dental technician was also a caregiver.

Don’t hesitate to share your caregiving story with strangers, if the opportunity arises. You never know what tips or support you may be able to offer each other.

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Today’s lesson: Don’t give up

I have some exciting news to share: I have been chosen by the Atlanta Writers Club as the 2015 recipient of the Rick Bragg Prize for Nonfiction.

AWC 2015 contest winners

The piece that I submitted, “Greetings from the Nursing Home,” was an essay that I have kicked around for a long time. I began the piece after my first visit with Dad at the nursing home. That was back in 2011.

Since then, the essay has gone through countless revisions, and has been critiqued multiple times. I have submitted the piece numerous times to contests and literary journals for publication.

Each time, it was rejected.

As any writer knows, rejection is part of the process. I kept plugging away. I’ve written other pieces that have been published, I’ve self-published essays on various online platforms, but this one essay was special to me. While finishing my book is my number one writing goal, close behind was getting this essay recognized.

I learned of the honor as I was standing in the middle of what was my parents’ condo. The living room furniture had just been removed, and donated to charity. I was standing in the empty room, considering the new possibilities, when my phone buzzed and I literally jumped for joy after opening the email with the “Congratulations” subject line.

I hope this will inspire all of you, that however you express your caregiving story, whether it is through the arts, sports, spiritually or any other form of expression, don’t give up hope. Your message is being heard, and it will find a proper home.

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A time of transition

Friday marked the three-month anniversary of my mother’s death. Certainly not a day goes by that I don’t think of her, but I am beginning to move through a transition phase.

Everyone’s grief process is unique and whether it takes a month or a year or 10 years, there is no reason to delay or rush the process. Nowadays, so many people want to be able to read a book or even just a Facebook post that offers them 10 steps to grieving and getting on with their lives.

I couldn't make it my home without adding a bit of "catitude" to the decor.

I couldn’t make it my home without adding a bit of “catitude” to the decor.

But like with the rest of life, grief is not easy.

With each marker of time, such as a birthday or holiday, the reminder of a loved one’s passing hits home once again. With each such event, the loss becomes more permanent.

I made decent strides while I was in New Mexico clearing out my parents’ belongings from the condo and beginning to add some of my own touches. This will be a long work in process, physically, financially and emotionally.

But the residence in New Mexico is slowly transitioning from being a place of sickness and burden, to being a place of rest and reflection. These kinds of shifts don’t happen overnight, and I know there will be bumps along the road.

There is a point where former caregivers can see beginnings, instead of just endings along their path of life. It takes some getting used to, but it’s part of the journey.

What helped you to cope after the death of a loved one?

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The $1,800 jacket

Always check pockets before donating or discarding clothing, especially when it belonged to someone with Alzheimer’s!

I have written previously about how Dad was obsessed with money. He carried around a bag of change and would dump it on the bed to sort it. He was paranoid people were trying to take his money so he carried around a large wad of bills wherever he went. The staff at the library Dad frequented told me about this, how they would try to tuck it back into his shirt pocket as it threatened to fall out at any moment.

dad jacket

This behavior is common to those with Alzheimer’s. So is stuffing things into the oddest places.

I finally tackled my parents’ clothes closet in earnest. I thought I had gone through my dad’s jacket pockets on a previous trip, knowing full well his tendency to hide things. We found an old family photo under the couch cushion, and I found letters and photos tucked inside junk mail.

I pulled out one particularly heavy and ratty old coat. I set it down on the junk pile and heard what sounded like the jangling of change. At the same time, I saw a bulge in the pocket. I reached in and pulled out a bag of coins, a lighter, and a large wad of bills.

The bill on top was a $100. I could also see dollar bills and foreign currency in the roll. I figured, okay the top bill was a $100, but the rest will probably be smaller bills.

Well, there were a lot of dollar bills and pound notes, but I was shocked to find the wad of bills was worth over $1,800!

This will make a small but noticeable dent in my credit card debt, so I am very grateful to have discovered it.

When caring for those with dementia, what appears to be trash can certainly turn out to be treasure!

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Coming home to an empty house

I am at my parents’ condo (guess I should start calling it my condo) for another round of tasks that come with inheriting property.

Just when I thought I was done being a caregiver, now I get to tend house!

I admit I had greater trepidation than I thought I would have regarding the return home. It’s not the first time I’m coming home to an empty house; I stayed here by myself when Mom was recovering from cancer in 2012.

Still, this time, the loss of my mother’s presence here is final, even though as I was stripping the bed and preparing it for donation my mother’s perfume filled the room.

image

Guess part of Mom still waited for my arrival.

If you’ve had to deal with property after a loved one’s death, please share your experiences.

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Dementia is not only about memory

A good read. It is true that Alzheimer’s is about so much more than memory loss. Those of us who have cared for someone with Alzheimer’s will be familiar with the symptoms outlined in this post.

Carrie Peterson's avatarDoctor Dementia and the Dementia Adventure

From the always helpful ThirdAge Services! I studied Gerontology with Carole at the University of North Texas. I was a fan of her back then and an even bigger fan now. If you are looking for advice or coordination in dementia care, she is an excellent Certified Dementia Consultant.

Most People think Alzheimer’s is only about Memory Loss; it Isn’t!

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Who the caregiving journey is really about

I am currently taking an online writing class which finishes up today. The content each class member writes is shared with the others in the group and the teacher/editor.

I always get so much out of these classes. One thing is that everyone has stories to tell. Some are funny, some are brutal, some are shocking. There is no such thing as boring when it comes to the human experience.

Photo credit: Freeimages.com/Ali AlMuallem

Photo credit: Freeimages.com/Ali AlMuallem

In addition to daily writing prompts, we are also asked to come up with a summary to help pitch our book idea. In a previous exercise, we had listed our character’s goals. Since my concept is a memoir, the main character is myself, and I wrote that the main goal was to “Keep Mom from dying, or if it’s her time, let her die with dignity.”

But as the teacher rightfully pointed out, a caregiving memoir is really the caregiver’s story. Even if a great deal of backstory is about the person being cared for, it is told through the filtered lens of the caregiver.

I think this is important to consider because so many caregivers lose their identities as they give more and more of themselves to others. The all-consuming duties of being a family caregiver leaves little time for reflection. When the caregiving phase of life ends, some are left wondering who they have become.

It can be a struggle to turn the lens on ourselves, after being out of the picture for so long. Whether through writing, music, art, dance or some other form of self-expression, it’s a place we owe to ourselves to explore.

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Being a Long-Distance Caregiver

I know this feeling all too well. Glad there are organizations like the Alzheimer’s Association to help find resources for long-distance caregivers.

alzga's avatar Georgia Chapter Blog

long-distance-caregiving

“Something is wrong with mom!”  The realization is frightening no matter where you are, but especially when you live far away from a loved one exhibiting signs of dementia. What can you do when you live hours away and a phone conversation with your loved one turns into a confusing jumble of past conversations or paranoid rants? Lately, I’ve had several conversations with long-distance caregivers embarking on this new and scary journey.

Recently I spoke with *Cassandra, a young woman who is her elderly aunt’s only living relative. Cassandra flies across the country fairly regularly to ensure that her aunt’s bills are paid, home is maintained and her medical needs are met. On her most recent visit, Cassandra arrived to find her aunt’s air conditioner broken, the house steaming hot and her aunt looking unkempt for the first time in her life.  Cassandra felt heartbroken, afraid, embarrassed and unsure of…

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