‘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.

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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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Dealing with dementia in an intimate relationship

Many of the people I follow on WordPress are dealing with a parent or grandparent with dementia. A few are dealing with a spouse, and with this, comes an entirely different and complex set of issues.

I finally got around to reading the memoir, “Jan’s Story,” by CBS correspondent Barry Petersen. The book has generated some controversy. Petersen’s wife, Jan, was diagnosed with early-onset Alzheimer’s at the age of 55. Petersen’s account of how Alzheimer’s impacted their relationship is frank and heartbreaking. After arranging for her care at home for several years, he finally places her in a residential facility as the disease progresses. Eventually, at the point where his wife barely remembers who he is, he begins a tentative new relationship with another woman.

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It’s the latter details that many find distasteful. Some of the couple’s friends turn against him, and some readers of his memoir feel he is selfish in his actions.

I certainly do not feel I am in the position to judge other caregivers, as there are many things I would do differently in dealing with my father’s dementia. I think hearing the male perspective is important when it comes to being a caregiver of a spouse with dementia. The breakdown of intimate relations is a side effect of dementia that many would rather not discuss. For Petersen, the loss of intimacy with his beloved partner is devastating. The transformation from lover to parent is traumatic. The difficult decision he makes are agonizing for him and I don’t believe were made on a whim.

The book brings up a host of interesting questions. Especially with early-onset Alzheimer’s, should the caregiver be left in relationship limbo when it may take a decade or more for the disease to finally cause physical death? As long as one provides good care for their spouse, is it acceptable to find affection outside of their relationship?

For some, “until death do you part” means just that, no exceptions. I respect that. But dementia has a way of turning the normal way of doing things upside down.

For those wondering, Jan died in 2013, a few years after the memoir was published.

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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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Caregiver Grief, Mourning, and Guilt

Joy Johnston:

As caregivers, we spend a lot of time trying to understand the emotional changes our loved ones with dementia are experiencing. But just as important to understand is the emotional upheaval we as caregivers are going through.

Originally posted on Caregiver 2.0:

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It’s normal to feel loss when someone you care about has Alzheimer’s disease. It’s also normal to feel guilty, abandoned, and angry. It’s important to acknowledge these emotions and know that you may start to experience them as soon as you learn of the diagnosis.

Alzheimer’s gradually changes the way you relate to the person you know and love. As this happens, you’ll mourn him or her and may experience the stages of grieving: denial, anger, guilt, sadness, and acceptance. These stages of grief don’t happen neatly in order. You’ll move in and out of different stages as time goes on. Some common experiences in the grieving process include:

Denial

  • Hoping that the person is not ill
  • Expecting the person will get better
  • Convincing yourself that the person hasn’t changed
  • Attempting to normalize problematic behaviors

Anger

  • Frustration with the person
  • Resenting the demands of caregiving
  • Resenting family members who can’t…

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Is unexplained weight loss an early symptom of Alzheimer’s?

I came across an interesting article about a piece of Alzheimer’s research I had not heard about before. Apparently, researchers at Weill Cornell’s Feil Family Brain and Mind Research Institute found a possible connection between the buildup of amyloid-beta peptides and weight loss. The peptides create the notorious plaques in the brain that is commonly associated with Alzheimer’s disease. The otherwise unexplained weight loss often occurred several years before symptoms of cognitive decline were diagnosed.

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According to the researchers, the amyloid-beta peptides interfere with the body’s ability to regulate its weight. If the research proves to be accurate, it is yet another cruel and devastating way Alzheimer’s destroys the body.

My dad was always on the lean side so it’s difficult to say if he suffered from weight loss early on in the disease. By the mid to late stages, my father was certainly wasting away, but up until the last couple of months of his life, he had a voracious appetite.

The more we learn about Alzheimer’s, the more we understand that this disease can manifest itself in ways we never imagined before. Alzheimer’s is not just about losing your memory; the disease attacks the brain in ways that can impact everything from swallowing to weight control.

Did you notice otherwise unexplained weight loss in your loved one before they were diagnosed with Alzheimer’s disease?

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The Layperson’s Guide to Palliative Care for Our Loved Ones with Dementias and Alzheimer’s Disease

Joy Johnston:

Sadly, I did not fully understand what palliative care offered until it was too late for my dad. This post is a great primer about what services palliative care offers and where it fits in with the care plan for your loved one.

Originally posted on Going Gentle Into That Good Night:

In the post “The Layperson’s Guide to Home Health Care for Our Loved Ones with Dementias and Alzheimer’s Disease,” we discussed what home health care is, when it should and can be used, and what services it provides.

In this post, we will discuss what palliative health care is, when and why it should and can be used, and what services it provides at home for our loved ones with dementias and Alzheimer’s Disease.

Although, as any caregiver can tell you, dementias and Alzheimer’s Disease are always on the radar with our loved ones who have these neurological diseases, there are often other health-related and age-related illnesses that our loved ones are also dealing with, especially if they’re elderly.

Home health care services are available – and should be used – when there is an acute medical condition that needs to be monitored and resolved (if possible) after our…

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Dodging the health crisis bullet … for now

Recently, I wrote about my mom experiencing a mysterious pain in the same general area of her colostomy surgery. She had a few other vague symptoms that warranted further testing. The oncologist ordered CT scans of the abdominal area and the chest.

Unfortunately I had to get back to work so Mom had to manage the scan prep on her own. Even though Mom certainly has her eccentric ways, it is such a blessing knowing that she is still fully capable of handling things outside of her routine, such as going for medical tests. Yes, it was stressful for her, but at 77, she managed quite well.

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The tests were done right before my birthday, with the results coming back the next week. I admit I spent a pretty good chunk of my birthday weekend mulling “worst case scenarios.” The colon cancer was back. The cancer had spread to another region. What would I do this time? I cannot afford to quit my job again. How would I afford Mom’s care.

Mom had a followup appointment with the oncologist on Wednesday afternoon. I was both eager to hear the results and dreading them at the same time. Finally, Mom calls. For once, she didn’t beat around the bush. (If it had been bad news I had a feeling she would have delayed the announcement.)

All of the tests came back normal. No cancer was detected. Mom was given a clean bill of health. Now of course that doesn’t solve the mystery of Mom’s pain (she insists on calling it a “discomfort.”) But the pain has not increased in intensity so far and it doesn’t stop her from going about her life.

So a sigh of relief, for now. As caregivers we are always ready for the next health crisis. But we also learn to appreciate those good days a bit more.

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