A Video Chat about Dementia and Caregiving

Gary Joseph LeBlanc of "Commonsense Caregiving"If you've never watched Gary Joseph LeBlanc's video chat about dementia caregiving, "Commonsense Caregiving," I recommend checking it out. Gary is a columnist, author, book dealer, and founder of the Alzheimer's/Dementia Hospitalization Wristband Project who took care of his father for 10 years in his home. I just finished reading one of his books of advice for caregivers, "Staying Afloat in a Sea of Forgetfulness," and thought it was spot-on. In his video chats, Gary brings together people who are living with dementia, and dementia caregivers, to discuss the special challenges we face.

Harry UrbanYesterday I had the pleasure of joining Gary for my very first video chat. (I gotta say, as an aside, that video chats are fun but not very flattering, physically--the choppy image makes me look like I'm half asleep or under the influence--ack. I have to learn to sit still in front of the camera!). Anyway, Gary and I talked with Harry Urban (left, a man with Alzheimer's who started the Forget Me Not Facebook group), and Michael Ellenbogen (below, a man with young-onset Alzheimer's, a dementia activist, and an author). We Michael Ellenbogenchatted about all kinds of things dementia-related:

• What it was like for my young children when my mother lived with us in the early stages of dementia, and what I hope my children have learned about caregiving;
• how to encourage a person with early-stage dementia to accept help if they really need it but they insist that they are fine;
  
• driving and dementia;
  
• Memory Cafes and support groups for people with early-stage dementia;
  
• the importance of caregivers going to a support group such as one through your county’s Office for the Aging;
  
• free support for caregivers available through the Caregiver Action Network;
• and more. 

I enjoyed talking with these guys, and hope that you enjoy listening to the chat:  https://vimeo.com/70727301

Is There a Diet to Reduce Our Risk of Dementia?

Today on eCareDiary's Expert Q&A I answer the question "Is there a particular diet that a senior can follow to reduce the risk of dementia?".  I write:

When I was growing up, my mother, Judy, taught me that margarine was better than butter because it didn’t have cholesterol (and because it was cheaper), but now the public knows about trans fat. I can’t help but wonder if that margarine and all the store-bought cookies my mother ate contributed to her dementia. (A 2011 study published by the journal Neurology showed a strong correlation between trans fat in the bloodstream and decreased brain function.)

Image courtesy of africa at FreeDigitalPhotos.netThere is no proven diet we can follow to avoid Alzheimer’s disease or other dementias, but in general what’s good for the heart is good for the brain. After thoroughly researching the connection between diet and dementia for the appendices of my book, I recommend eating food that is low-carb and anti-inflammatory.   

My advice to eat low-carb, like the advice of Gary Taubes and others, goes counter to the prevailing medical recommendations since the 1980s to eat low-fat. Alzheimer’s disease (the most common type of dementia at 60-80%) has been called “type III diabetes,” and research suggests that with Alzheimer’s disease the brain becomes resistant to insulin and has difficulty utilizing glucose for energy. In 2010, researchers at Kyushu University in Japan reported that people with diabetes or pre-diabetes are more likely to develop beta amyloid brain plaques in the brain (which many researchers believe is linked to Alzheimer’s disease). Since high blood sugar increases the body’s insulin level, leading to insulin resistance in the cells of both body and brain, one way to protect your brain may be to keep your blood sugar levels low with a low-carb diet. For vascular dementia from tiny strokes (the second most common type of dementia, at up to 20%), controlling your blood sugar can reduce inflammation, a risk factor for stroke.

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When the End of Life Comes Quickly: Finding Support as a Family Caregiver

My mother, Judy, passed away in December with advanced dementia, and looking back, I wish I had a “community of care” in place for myself before her sudden decline over four days. As caregivers we think so much about our loved ones’ quality of life that it’s difficult to think about what their death might look like, and how we might want to feel supported as caregivers during our final vigil.

Over the 8 years I cared for my mother in my home, assisted living, a “memory care” facility, and a nursing home, I knew how important it was to reach out for support as a caregiver. My favorite source of support was the caregiver group at my local Office for the Aging. I thought I was well-informed and prepared for Mom’s end of life—she had a Living Will, and I knew she didn’t want CPR, a feeding tube, or other invasive procedures. I was taken by surprise, however, by the toll her last days would take on me physically and emotionally.

One day in late November Mom was fine, holding my hand by the nursing home Christmas tree, and the next day she was sent to the hospital at 3 a.m. with difficulty breathing, diagnosed with congestive heart failure. It got worse quickly. After I fed her a pureed breakfast, she vomited and aspirated the vomit, which the nurses in the hospital could not completely suction out of her throat. By the time Mom arrived back at the nursing home she was in severe distress. It took two hours for morphine to ease her breathing and heart rate. (I’m still upset that the doctors and nurses in the hospital did not realize that Mom needed morphine before she was transported.)

Over the next few days my husband Ben took time off from work to sit with me and drive back and forth between the nursing home and our two teenagers at home. A neighbor in our cohousing village sent out an email asking people to bring meals to our home (which they continued for a week after Mom died). A couple of friends came to keep us company in the nursing home and to say good-bye to Mom, but most of the time Ben and I were alone in Mom’s room. I was too exhausted to make a lot of phone calls or invite others to join us. Hospice, which I arranged as soon as Mom returned to the nursing home, could be there only an hour or two a day.

Some of the nurses in the nursing home were compassionate and responsive, while others I had to chase down for morphine. I found it particularly difficult to know if what Mom was experiencing was normal or not—if I should worry about the foam in her mouth, the seizures, or the temperature of 105. In her last two days she seemed at peace, but my nerves remained on high alert. The night before Mom died I went home completely spent, and fell into a deep sleep while Ben stayed at her side until 2 a.m. At 8:00 a.m. I got a call that Mom had passed. We drove back to the nursing home to say good-bye.

Being fully present at a loved one’s deathbed will use every ounce of your physical and emotional energy. Let others know ahead of time that you may need them to come and be with you, to hold your hand, offer a hug, bring food, or take your place at the bedside for a few minutes as you take a break. Perhaps a family member or friend could set up a phone tree for you (or a webpage on Lotsa Helping Hands) so you only have to make one initial call to alert your care community that another critical time for help has arrived. As you invite more friends and family members to support you in those final days, not only are you protecting your own health and energy, you are helping your loved one have a better death.

Love, Loss, and Laughter: Seeing Alzheimer's Differently

Hello again, dear readers. Today I'm thrilled to share with you a short (6 min.) video about seeing Alzheimer's differently, a BBC video narrated by and illustrated with photographs by Cathy Greenblat, sociologist and author of the book "Love, Loss, and Laughter:  Seeing Alzheimer's Differently." 

I met Cathy at an exhibit of her photographs in New York City a year ago. Thanks to Cathy, and other leaders in the movement to improve dementia care, we know that people living with Alzheimer's disease and other dementias-- even advanced dementia-- are not "shells of their former selves" but still here, still able to connect with others and enjoy the simple pleasures of life.

This video reminds me so much of my time with my mother, Judy (left), how we found ways to communicate with each other when she'd lost her language, through facial expressions and touch, and how we could still enjoy spending time with each other, right up to a few days before she passed away in December.

Cathy's work is hopeful and deeply moving. Please take a moment and watch the video. You'll be glad you did.

The link:  http://www.bbc.co.uk/news/health-21862859

"Inside the Dementia Epidemic" wins Next Generation Indie Excellence Award for Memoirs

Hi everyone. I'm so pleased today to share that my book is the Winner in the Memoirs (Overcoming Adversity/Tragedy/Challenges) category of the 2013 Next Generation Indie Excellence Book Awards! I win a gold medal, check, consideration by a NYC agent, and national promotion. I'm debating whether to ask for time off of my new job as an administrative assistant to attend the award ceremony in NYC. In any case, I'm very grateful to everyone who coached me through the 6 years I spent writing, editing, and designing the book. Special thanks go to Laura Shaine Cunningham, Kathryn Craft, Jerry Waxler, Ellen Schmidt, Heather McCarty, Susan Daffron and James Byrd of Logical Expressions, and Susan Koski Zucker.

If you tweet or use Facebook, please help me spread the word by posting something like this:

"Inside the Dementia Epidemic: A Daughter's Memoir" named Winner in Memoirs (Overcoming Adversity/Tragedy/Challenges) category, 2013 Next Generation Indie Excellence Awards. www.insidedementia.com

Thank you for your support and have a wonderful day!

-- Martha