Monthly Blog Archives: July 2013

I don’t need training. I know my Mom

What do you do when your mom has Alzheimer’s disease, your father denies it, and your siblings are of no help? Caring for a parent with Alzheimer’s disease has a steep learning curve. Yet may family caregivers feel they “should” be able to handle it—No training needed. You must ask for help. Read what you can get your hands on. Attend support groups. Instead of arguing with someone who has Alzheimer’s disease, use my favorite phrase: “You may be right.” And walk away.

I recently interviewed Pam Brammann, who provides training for family caregivers. She shared with me brain brain images (PET scans). First you see a normal, active brain compared to an Alzheimer’s brain. You see very little activity in the diseased brain. The second set compares a normal infant’s brain to that of someone with late stage Alzheimer’s disease. It becomes clear just why you can’t reason with someone who has Alzheimer’s disease—their brain is working at the level of a 2-year-old.

Normal Brain vs Alzheimer's Brain Late Alzheimer's Brain vs Normal Infant's Brain

As Pam explained in our radio interview, “If a two-year-old runs across the street, you don’t sit that child down and elaborate the dangers of running across a street; the child won’t get it. Same goes for someone with Alzheimer’s disease.” Reasoning with someone who has Alzheimer’s disease or other dementias doesn’t make sense.

Even if you think you know your Mom or Dad, you may not understand how the disease has changed their brain. Getting a little training to better understand the disease and just how you can handle the symptoms (or behaviors) will do wonders to keep you sane.

To Organize or not to Organize. Is that even a question?

Just having packed for a three-week trip to Norway, I am amazed at all the stuff I think I need. And I know I’ve made copies of my passport, driver’s license, and credit cards for previous trips, but couldn’t find them before this trip. I’m sure they’re in a file. Or a pile. Somewhere.

My husband recently went in for a colonoscopy and made it a goal to complete his health care directive. He’ll file his copy with my health care directive and hopefully, if someone needed to find them, they could.

As part of a caregiver focus group, we asked family caregivers what they least expected. Top among the issues had to do with the high cost of care and spending a lot of time tracking down documents. I make reference to gathering financial and legal documents in The Unexpected Caregiver, and recently interviewed Hope Clements with My Legacy Made Easy (Listen to our radio interview here). She and her partner created this product to organize your life’s work and give peace of mind to your family caregivers. They use a three-step process to help you establish and maintain your legacy planner. You walk away with all of your important documents in one place. How cool is that?

When you’re in the emotional throes of giving care to your parents, it feels like a waste of precious time to search high and low for necessary documents. Here’s what I suggest: organize your own “stuff,” then offer to help your parents do the same. Check out www.mylegacymadeeasy.com and get in touch with me if you need help! Once many of the details are in order, you can focus on connecting. What a gift!

Wait until you retire to travel

Good thought, but doesn’t always work. How many times have you heard stories about your neighbor who put off travel until retirement, only to be met by a stroke and have to give up his dreams to travel.

My maternal grandfather waited. And then his Huntington’s disease spoiled his dreams of a retirement full of adventure.

In The Unexpected Caregiver, I provide creative suggestions of how to physically travel and also mentally travel from the comfort of your own home. Add to my suggestions the ideas of Thomas P. Stern of Assisted Vacation. Whether it’s Alzheimer’s disease or physical issues, the Assisted Vacation team will build a travel vacation that supports both caregivers and care receivers. Read more »

Songs in my head

I think in song lyrics. I open my laptop and the words to a Bahamian lullaby pop out of my mouth: “All my files Lord, so-oon be open.” This just happens with me. And yet if you sit beside me in church when I have the words of a hymn in front of me, I’ll sing different words. My good friend Emily chuckles and says, “How can you get the notes so right and the words so wrong?”

Music has always been a part of my life. It’s something I can share during a presentation or at the bedside of a Hospice patient. When I worked in a dementia care community, I used song to greet the residents. Music can be used to shift moods, to acknowledge sadness, to release anger, to embrace happiness. As a family caregiver, you can use music to connect with your parents. Instead of listening to “their” music or “your music,” take turns. My dad and I dance to Madonna and Frankie Valli. Instead of telling your kids or grandkids to “turn off that noise,” engage with them. What is it about the beat, the words, the band that they enjoy?

IMG_2513More than just enjoyment, music can also be used to help someone who has suffered a stroke to relearn how to speak, a person with Parkinson’s disease to improve their posture and reduce pain, or a patient in Hospice to leave a song legacy. I welcomed back Melissa Hirokawa, M.M. MT-BC, Neurologic Music Therapy Fellow, on “The Unexpected Caregiver Radio Show,” where we focused on using music in stroke therapy. Melissa clearly loves her job and shares delightful stories of how her work has improved the lives of those elders to whom she gives care. Our previous interview focused on how music therapy supports the family caregiver. Both interviews are upbeat and insightful.

Whether you engage a music therapist, use songs to connect with your loved one, or like me, think in songs, let music support your on your caregiving journey.