“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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Slow Dancing with a Stranger: Lost and Found in the Age of Alzheimer’s by Meryl Comer

Joy Johnston:

Another book to add to our reading list. There is always something to learn in the experiences of others.

Originally posted on Sociological Ruminations:

Book Review: Slow Dancing with a Stranger: Lost and Found in the Age of Alzheimer’s (HarperOne, 2014) by Meryl Comer

Slow Dancing with a Stranger was published earlier this month, and all proceeds will be donated to Alzheimer’s research.  In this memoir, Meryl Comer writes about taking care of her husband, Dr. Harvey Gralnick, who developed early-onset Alzheimer’s and has been living with the disease for the last nineteen years.  slow dancingMy dad has been living with Alzheimer’s for ten and a half years, so I was very surprised by how long it took for Comer’s husband to initially be diagnosed and receive treatment after he started showing signs of Alzheimer’s.  It took at least 4 years.  This was due, in part, to denial and pride — her husband was a doctor and researcher who worked for the National Institutes of Health.  Alzheimer’s was also not really part of the…

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Long-distance caregiving sucks

Mom has had a mysterious health setback, despite getting good results on all of her tests.

Trying to manage a health crisis from over a thousand miles away is beyond stressful. I know many of you understand.

Mom is tougher than she looks!

Mom is tougher than she looks!

On Labor Day, Mom called me to tell me she was calling 911. The pain in her back was just too much for her to endure any longer. After several stressful hours, I called the hospital and they said they were sending her home, that she just had a lumbar sprain and constipation.

Frankly, I didn’t believe their diagnosis then and I still don’t. Mom continues to feel lousy, though her back is a bit better. Her digestive problems continue, and I fear there is something going on with the colostomy reversal.

The next step will be more invasive tests, like a colonoscopy (ugh, she just had one done in December) or an endoscopy.

These tests usually require someone to be present with the patient. So now I’m looking at a last-minute plane ticket close to $1000 and who knows if the test will get us any closer to a true diagnosis, when the other battery of tests didn’t show anything? By no means am I saying that spending the money isn’t worth it if I can help Mom get the treatment she needs. It is just another sober truth of caregiving from afar. It is costly, both in the financial and emotional sense.

I know patient advocates exist but in my mom’s area, they seem to work mainly in the hospital setting, answering questions and dealing with paperwork. I wish there was a service where I could hire a professionally trained caregiver to actually go with my mom to the hospital, and be there with her during tests and procedures. The advocate would ask pertinent questions and then be able to report back to me what is going on.

In an ideal world, I would be there with my mom in all of these situations. But we don’t live in a perfect world, and I know there are many other seniors living independently who do not have family members or relatives living close to them. With our rapidly aging population, I feel this will become an even greater issue.

Every time these situations arise, someone always asks, “Why don’t you just move your mom in with you?” or “Why don’t you move closer to your mother?” These people mean well, but these are huge, life-changing decisions to make, and frankly sometimes it is simply not feasible. That being said, feelings of guilt and doubt linger.

One thing I am immensely grateful for: my new job can be done completely remotely, and my boss has given his blessings that I can work wherever and however I need to if I need to go care for my mom.

If you’ve had experience with long-distance caregiving, what resources did you find most helpful?

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When Caring Takes Courage: A MUST HAVE Caregiving Guide

Joy Johnston:

So agree about dementia caregivers needing info, but not having time to read it. I look forward to checking out this interactive book designed with that in mind.

Originally posted on The Long and Winding Road...:

As I sit down to write this long overdue piece, I can’t help but be struck by how many wonderful people I’ve met through dementia advocacy. It’s safe to say that as a whole, these are some of the most gifted and compassionate human beings on the planet. Each has a unique story, but those stories are the common thread that creates such a bond between us.

Mara Botonis falls into that category. To be honest, I don’t recall exactly how we first crossed paths; however, I do know we were instant friends. I’m grateful that social media provides an avenue for meeting people all over the country – and the world, for that matter.

A Caregiver’s Handbook

But, I digress. The intent of this post is to introduce you to what I believe is the best resource in existence for Alzheimer’s and dementia caregivers. I know that’s a lofty…

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Throwing pills at a mystery problem

I know many of you have dealt with similar problems when it comes to the mystery ailments our loved ones have. The journey to the diagnosis is riddled with potholes.

So despite having several different tests which showed nothing wrong, my mom continues to experience pain in her back and abdominal region. The pain became worse over the past week, so back to the doctor she went.

pills

It was a relief doctor because Mom’s primary care physician was attending to a family emergency. Mom had to wait over three hours to see the doctor.

Without going into too many details, Mom’s bowel habits have been irregular, so the doctor prescribed a stool softener for her. Fine. I’m hoping that Mom is just constipated and we can get her on some fiber supplements and probiotics to keep her regular.

She also ordered x-rays of the abdomen and back. I don’t think they did the back during her recent radiology visit, but she just had the abdominal scan done a month ago, presenting the same pain complaint. Of course I want to know what is causing Mom’s health issue, but it seems like it would be in the best interest to keep the radiation exposure of a cancer patient to a minimum.

A urine sample was also taken. Mom said some of the urine spilled on her hand as she was collecting the sample. The doctor said there was some bacteria present, and sent it to the lab for further processing. In the meantime, the doctor prescribed her antibiotics.

I despise this knee-jerk reaction most doctors have when it comes to antibiotics. Chances are, the bacteria was from the contaminated sample. (Mom told the staff about the mishap.) I’m not trying to minimize the serious health risk of infections in elderly people, but antibiotics also come with their own side effects. And certainly, antibiotics can cause stomach upset, which is the last thing Mom needs.

That’s my point. Doctors prescribe antibiotics like they are aspirin, “just in case” there is an infection present. I’m all for preventative medicine, but let’s face it, antibiotics are used as a timesaver. They make the patient feel like they are doing something for their health issue, and it saves the doctor from having to spend time further investigating symptoms. It’s not just doctors that are to blame; patients have now been trained to demand antibiotics as the standard of care for a variety of ailments.

Antibiotics are wonderful, life-saving medications. But as the CDC has stated, doctors overprescribing antibiotics is creating a health crisis of its own.

The real head scratcher is that the doctor prescribed my mom a new pain pill. Mom is already on pain medications. Constipation is a common side effect of prolonged pain medicine use.

So Mom goes home with a bag full of pill bottles, but we are no closer to figuring out what is causing her mystery pain. Frustrating.

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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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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.

jans-story-cvr

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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