Tag Archives: Alzheimer’s

A sweet and simple connection

I watched a video that has been making the rounds on Facebook lately, and I thought it illustrated how we can still reach those in the latter stages of Alzheimer’s, we just have to be flexible in our approach.

Musician Joe Fraley’s mother has Alzheimer’s, and back in October, before she was moved to assisted living, Fraley recorded a video of him and his Mom sitting on the porch while he strummed a guitar and sang.

Clearly, the woman is confused and asks poignant questions like “Who are we?” Fraley’s approach is refreshing because he keeps things light and conversational, while still addressing her concerns and not being dismissive. The woman responds to the music, and you can see how it lights up her face, even if it is just temporarily.

Not only is it important for those with Alzheimer’s to still connect with their family members in small but meaningful ways like this, I believe it is equally important for the family caregivers. While the recorded moment is still tinged with sadness, Fraley was able to reach his mother through the cloud of dementia by their mutual love of music, and that is a memory to cherish.

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Dad, three years gone from this world

Today is rainy, chilly and dreary, just like three years ago when I received the dreaded phone call that my father had died.

Everything else is so much different.

One of my favorite photos.

One of my favorite photos.

Little did I know at the time that I had taken the first of many significant dips on the roller coaster of life. Mom, always the picture of health, was diagnosed with stage III colon cancer just seven months after my father’s death. I quit my job to take care of her for the next six months. It would be another year before I secured any regular work.

I discovered that freelancing is best approached when you have time to plan and build clients, not for a sudden source of steady income. I learned that being a really good employee doesn’t get you very far in this job market.

And perhaps most importantly, I immersed myself in the world of Alzheimer’s activism, and learned so much from the stories I read.

So I am definitely a different person than the one who answered that phone in the middle of the newsroom on December 20, 2011. I hope I’m a bit wiser, and a lot more compassionate.

Tonight I will light a candle, toast Dad’s spirit with a glass of Irish whiskey and remember his wonderful singing voice, realizing that one can smile and mourn at the same time.

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Bittersweet holiday

As I’ve written before I’m sure, Thanksgiving was my dad’s favorite holiday. He loved turkey! My dad was not one to get too excited about food normally, so it was a big deal to watch him devour slice after slice of turkey.

While I can still recall those fond family memories, they are unfortunately overshadowed by that Thanksgiving three years ago. Dad was in the ICU, clinging to life. I was trying to figure out when I should fly out, because I was working the entire holiday weekend. The nurse said he could pass in two hours or two months, there was no telling. As soon as I arrived to work on Black Friday 2011, I received the call from a nurse, frantically asking me if they should pull the plug on my dad’s life support.

turkey

I’m now back working in the same newsroom I was that day when I received that terrible call. Every now and then I’ll glance to that corner of the room and remember the pacing I did that day three years ago, trying my best not to completely freak out from the stress. I’m once again working the holiday, but from home this time. Thankfully I won’t have to mark the anniversary of those painful memories at the office.

So Thanksgiving is bittersweet for me. I still enjoy the food and try to focus on the happy memories. Life, and death, does not pause for holidays.

I hope somehow, somewhere, Dad is enjoying a few big slices of turkey.

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Fascinating study regarding cancer and Alzheimer’s

Because I had one parent who had Alzheimer’s and another parent who has battled cancer, I was intrigued by this study that explored the low rates of cancer in those with Alzheimer’s and vice versa.

maze

Researchers may have found a defect in a critical brain cell pathway that can lead to Alzheimer’s or cancer depending upon which way the imbalance of cell activity presents itself. This may help explain why Alzheimer’s patients have a lower risk of cancer and cancer patients are at less risk for Alzheimer’s.

Further studies will try to determine if activity can be boosted in the damaged cell pathways, which could potentially reduce the cognitive impairment in Alzheimer’s patients.

I always thought my dad was destined for cancer because of his smoking habit, yet he remained cancer-free, while my mom, who doesn’t have typical cancer risk factors ended up with colon cancer. While I’ve read of people who have had both diseases at the same time, it does seem pretty rare. Instead, we hear more about the cruel irony of the dementia patient who is otherwise physically healthy.

After all of the deaths and misery both of these diseases have caused, it would be wonderful to find an effective treatment for both of them.

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“The Genius of Marian” an emotional, intimate look at Alzheimer’s

It may seem odd to say that a documentary about Alzheimer’s is beautiful, but there is much beauty in the family-made documentary, “The Genius of Marian,” as well as a great deal of love.

That’s what makes the devastation that Alzheimer’s unleashes on this one close-knit family so utterly heartbreaking.

Photo: geniusofmarian.com

Photo: geniusofmarian.com

The documentary is about two remarkable women, mother and daughter, both who end up with Alzheimer’s. Marian Williams Steele was a talented artist and vibrant woman. She was diagnosed with Alzheimer’s in the late 1990’s and passed away in 2001 at the age of 89.

Her daughter, Pam White, is equally fascinating. She is a beautiful woman with an amazing smile who was an actress and model. After her mother passed, White planned to write a book about her called, “The Genius of Marian.” Sadly, Pam herself was diagnosed with early-onset Alzheimer’s at the age of 61, just as she was getting started on the book.

Her son, Banker White, decided to make a documentary about these two remarkable women. He doesn’t hold back, showing the ups and downs that occur with Alzheimer’s, and how the family struggles and copes with the situation.

White’s husband is a testament to the power of love. He does an incredible job as caregiver for his wife, a role he was thrown into with no experience, like many family caregivers.

I don’t want to give anymore away because you really should see the film. The good news is that you can do so for free thanks to PBS, through Oct. 8. I watched it on the PBS channel on my Roku box. You can also watch it online. If you can, please consider donating to the filmmakers’ charity, The Genius of Caring.

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‘Alive Inside’ and the power of music

I was able to go see the documentary, “Alive Inside” this weekend and it definitely met and exceeded my expectations.

As many of you probably know, the inspiring project at the center of the film is best known by a clip posted on YouTube of an elderly African-American man named Henry, who is in the latter stages of Alzheimer’s. He lives in a nursing home and his caregivers say he is barely verbal, usually keeping his head down all day long. Then they put the headphones on, and play the beloved music of his youth. Like a switch, Henry becomes alive, and most surprisingly, quite verbal and coherent. The effect is truly amazing. The video has gone viral, receiving millions of page views.

alive inside-poster

Dan Cohen, through his Music & Memory program, has a mission: he wants to bring personalized music to every nursing home resident in America. It sounds like a simple, clear-cut mission, but it turns out to be quite a challenge. Bottom line, there’s more profit to be made in the creation and marketing of ineffective medications than there is in Cohen’s proven grassroots program.

The benefits of music to those with dementia and other mental illnesses is astounding. Music has a greater impact on us than just making us tap our toes and fingers. Music touches the deepest parts of our emotional core, that usually remain intact even into the latter stages of Alzheimer’s.

Music has been part of my life for as long as I can remember. My dad would sing to me as a baby, I had a collection of Disney records as a little girl, and then I went on to develop my own eclectic taste in music as a teen and adult. Music can move me to tears or pump me up with energy. I can’t imagine life without music.

I wish I had understood the power of music better while my father was still alive, because I’m sure he would have loved to have heard Bing Crosby and Frank Sinatra.

Another point the documentary makes is how lonely and dehumanizing institutional life is for the residents. While music is not a substitute for human companionship, it can help fill a void.

“Alive Inside” is getting great reviews and I hope the buzz around the film will translate into donors who will help Cohen reach his worthy goal. If you have an iPod collecting dust, please consider donating it to this program.

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Showing appreciation for the dementia caregiver community

A big thank you to Neighbor Nancy and Ann Ahnemouse for nominating me for a Very Inspiring Blogger Award. Nancy I have had previous contact with but I don’t believe I have with Ann, so it was a pleasant surprise to hear she had been following my blog for quite some time. It is yet another reminder of the wonderful community of caregivers waiting to be found in the blogosphere.

The rules are simple:

Thank and link to the amazing person who nominated you.
List the rules and display the award.
Share seven facts about yourself.
Nominate 15 other amazing blogs and comment on their posts to let them know they have been nominated.
Proudly display the award logo on your blog and follow the blogger who nominated you.

7 facts about me:
– I have Celiac Disease, and have been on a gluten-free diet since 2005.
– I’m a cat lover.
– I like my coffee black, no sugar.
– I’m a bourbon aficionado.
– I was born and raised in California, but have no interest in returning.
– A big Greek salad is one of my favorite meals.
– Stephen King is one of my favorite authors.

Bloggers you should follow (For sake of time, I have less than 15 but will try to add more soon!)

My Neighbor Miss D Nancy is a devoted elder advocate, and has been the driving force in helping a neighbor in her building who has dementia return to her home after she suffered abuse from family members.
Ann Ahnemouse As I said, this is a new blog for me, but she’s been posting for a few years! Ann writes about her journey with her partner, and how his dementia impacts their lives.
terry1954 I’ve been following Terry’s blog for quite a while. Terry was the sole family caregiver of her brother, who had MSA. He died this year, and while the end of his suffering was indeed a blessing, there is a giant hole left behind when our loved ones depart, no matter the circumstances. Terry is a fearless writer who shares her thoughts on many topics.
Alzheimer’s Speaks: Lori La Bey is a tireless advocate for caregivers. She has a radio show as well!
SaveEveryStep: You should subscribe to this blog for the weekly “Joe’s Letter” post alone. The letters are from the blogger’s uncle from WWII and they are so fascinating! If you love nostalgia, you’ll love her blog, as she often writes about the fashions and music from her childhood and adolescence. But Helen Spencer founded the website, SaveEveryStep.com in memory of her mother. She is giving back to the world by allowing you to capture your own family’s memories and preserve them for free, a useful service to anyone, but especially for families touched by Alzheimer’s and dementia.
Hot Dogs and Marmalade: This blogger’s mother has Alzheimer’s and she writes both poignant and humorous accounts of her family’s life. You’ll have to read her blog to find out the reason for the unusual title of her blog!
My Demented Mom: Kathy Ritchie doesn’t sugarcoat one bit of her experiences caring for her mom, who has frontotemporal dementia. Kathy is in her 30s and is now a mother herself. Her blog is breathtaking in both its agony and in the way she expresses her love and dedication to her mother.
Quilt of Missing Memories: Talk about a family devastated by dementia. Jacquelyn’s father, mother and husband all have a form of dementia. Her father has passed, and late last year, so did Jacquelyn’s husband. I appreciate this blog because of the simple and joyous photos and short poems that are posted on a regular basis.
Lori’s Lane While not a caregiving blog in particular, the blogger did find herself in that role when her husband suffered a serious accident on the job. I love this blog for the insightful posts and the uplifting quote every Friday.

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