I’ve been following artist and family caregiver Emily Page’s blog, The Perks of Being an Artist, for quite some time now. Her blog documents her father’s battle with frontotemporal dementia (FTD) and her experiences as a younger caregiver as well as being a place for her to share the amazing art she creates.
Page often injects humor into her musings, which I appreciate as she documents the difficulty of the dementia caregiving experience, which I could relate to all too well. I was sad to hear of her father’s passing, but also understood the sense that he was free from such a cruel disease.
Page has written a book about her family’s experience with dementia, titled, Fractured Memories. [Also available on Amazon.] In it, you’ll learn her family’s story, why her father was so special to her, and heartfelt journal entries that document the highs and lows of family caregiving. You’ll also get to view selections of Emily’s artwork, and why the symbol of the elephant is so important.
I highly recommend the book, especially to those who are or who have gone through the dementia experience with a loved one. There are many things caregivers will be able to relate to in the book, from the difficulties in managing those with dementia at home, to the frustration of the sometimes poor care received at expensive memory care facilities. Page accurately documents the range of wild emotions one experiences as a family caregiver to someone with dementia. Of course, everyone’s journey has unique situations, but I think most dementia caregivers will nod in sympathy with the experiences of the Page family.
While there are heartbreaking moments, there is quite a bit of humor, and most importantly, the love Page has for her father shines throughout the book. I love the symbolism of the elephant and how Page was able to use her artistic talent to express various stages of disease and caregiving. I hope you’ll consider reading Fractured Memories and recommending it to other dementia caregivers.
Photo credit: Pierre Amerlynck/Freeimages
Next week, I’m headed to Chicago for the Aging in America conference.
I look forward to attending sessions and meeting other advocates who are addressing the needs of America’s rapidly aging population. My Respite Care Share concept will be presented as part of the poster sessions. I know I will come away with a lot of takeaways, which I will share here upon my return.
When I think about aging in America in the big picture sense, I see crisis and opportunity. There are multiple crisis points that must be addressed, but each of those crisis points is also an opportunity. And while grassroots efforts can’t solve all of the problems surrounding aging, they can make a real difference.
Some of the major aging issues I care about include:
- Health care: The affordability and quality of health care for seniors must be addressed. There is much Medicare doesn’t cover, such as residential care for those with Alzheimer’s. The outrageous residential care expenses can quickly bankrupt a middle-class family. Many Medicaid programs are overwhelmed, and facilities accepting Medicaid often have long wait lists and sometimes are of substandard quality.
- Aging in place: One way to avoid the high costs of residential care is to care for aging loved ones at home. However, that comes with its own costs, such as renovating a home to make is safer and more accessible for seniors, and adult children being forced to leave the workforce or reducing their work hours to take care of aging loved ones. This not only has an affect on the caregiver’s current income and health insurance benefits, but their family budget and retirement outlook as well. The mental and physical toll of caregiving that must be considered as well. Community programs can assist with some of these issues.
- Professional caregiver shortage: As America’s population rapidly ages, the need for professional caregivers to fill in the gap that families cannot cover is also rapidly growing. Because these jobs pay so little, there is a shortage of quality people for these roles. While spending their days caring for others, many professional caregivers cannot afford health insurance for their own families. My mother’s personal caregiver ended up quitting the field because she couldn’t afford to put gas in her car. If we value caregivers more in the job market, we can fill the staffing shortage and reduce unemployment.
- Alzheimer’s & other dementias research: I care about supporting the research into all major diseases that claim the lives of Americans. My mother lost her life to colon cancer. But my father’s battle with Alzheimer’s illustrated to me the cruel particulars of this condition, and how the entire family is mentally, emotionally and financially impacted. It’s important that we keep funding research efforts and participating whenever we can in trials and other studies that can help find effective treatment.
- Family caregivers: Last, but certainly not least, I am a strong advocate for more support for family caregivers. Greater financial support is a must, but at the community level, encouraging caregivers to use respite and simply being a good listener for a caregiver who needs to vent are just as vitally important.
What aging issues are most important to you?
I strongly believe that to reach people about an issue they are unfamiliar with, presenting them with experiences from real folks is the way to go. The new PBS documentary, Alzheimer’s: Every Minute Counts, does just that, highlighting the emotional toll the disease takes on caregivers, while also demonstrating the physical and financial consequences associated with the disease.
The documentary doesn’t sugarcoat the situation. It uses the term, “families in crisis” and how our government and society are largely failing to meet their needs. As those of us who have personally been touched by dementia likely know but the general public may be less aware, Alzheimer’s doesn’t discriminate based upon race. The Duartes in Springfield, Missouri are one of the families highlighted in the documentary. Daisy takes care of her mother, Sonia, who was diagnosed with early-onset familial Alzheimer’s at the age of 57.
Families like the Duartes are fighting back, by participating in clinical trials and telling their story to lawmakers. Daisy spoke to members of Congress, who gave a sympathetic ear and related their own tales of family members with Alzheimer’s. Right now, our government is in turmoil, but we must keep the momentum going in the battle against Alzheimer’s and in our campaign to better support caregivers.
The documentary also highlights Rick in Florida, who is overwhelmed by the high cost of residential Alzheimer’s care, when his mother’s condition prevents her from staying in her home. Rick is also saddled with guilt and remorse, because Phyllis is adamant about staying in her own home. This is a heartbreaking decision that so many families face.
I highly recommend this documentary. While it is tough to watch families struggle with this disease, there are people out there dedicating their lives to finding effective treatment and supporting caregivers. Hopefully this film will inspire others to join the fight.
To mark MLK Day, I thought it would be appropriate to highlight a gentleman who is truly an inspiration when it comes to raising dementia awareness. His success proves that all of us can make a positive change in our world, if we simply try.
Norman McNamara is a UK resident who was diagnosed with dementia at the age of 50. (Initially misdiagnosed with Alzheimer’s, it was later discovered he has Lewy body dementia.) After being treated rudely by a shopkeeper, he was inspired to raise awareness of dementia in hopes of improving the daily lives of those with dementia in his community. With the help of his wife and community members, the Purple Angel project now has ambassadors and supporters worldwide.
Purple Angel logo, designed by Norman McNamara and caregiver Jane Moore.
If you spend time in the world of dementia online, you have likely seen the Purple Angel logo. You may have seen it in the windows of businesses.What the emblem signifies is that the business owner and staff have read informational material: the “Guide to Understanding Dementia” by McNamara and “What is Dementia” by the Alzheimer’s Society. By raising awareness of dementia and the challenges those with dementia face, business owners can offer more appropriate and compassionate service, helping create a dementia-friendly community.
A short film about McNamara and the Purple Angel project, Norrms, has been released and McNamara has written multiple books on his experiences with dementia.
It’s inspiring to see how one man’s desire to improve his community has sparked a worldwide campaign, raising dementia awareness one neighborhood at a time. The success of grassroots campaigns like this inspire me to continue my work on Respite Care Share. No one person can solve the challenges of dementia and caregiving alone, but each step concerned citizens take can make a big difference.
I’m sharing another post from the wonderful series that Welcome to Dementialand has written. This one really hit home with me, because my dad was definitely a “non hugger.” He was never very demonstrative, even before dementia, but when my mom would visit the memory care center, and she would try to hug him goodbye, he would admonish, “No more hugs!” My mom tried to joke about it but I know it hurt her.
That being said, it is very important to recognize and honor the level of touch a person with dementia demonstrates they want. There are many factors involved, as the post explains.
The last photo of Dad and I together, July 2011.
This is the second of a series of five posts about the senses in Dementialand. Today we focus on touch. The issue of touch, or tactile stimulation, for those with dementia is complex. An entire book could be written on the topic, and I will be clear that this post is not a complete summary of […]
via Touch in Dementialand (aka The Huggers and the Non-Huggers) — Welcome to Dementialand
One of the most frightening aspects of my dad’s dementia was his tendency to wander. It is unfortunately a common symptom of Alzheimer’s and other dementias. It can place people in life-threatening situations. In fact, a gentleman with Alzheimer’s in the same town where my parents retired wandered away from his home one winter and died from exposure. He’d fallen into a ditch and had gotten tangled in some weeds and brush.
Fortunately, my father’s wandering never led to physical danger, but it did scare my mom and I. On a few occasions, my mother had to call the police, who were wonderful about tracking my father down, but it was nerve-wracking until he was home. It also became impossible for my mother to take my dad on any errands, because she couldn’t trust him to wait for her. One time he wandered away while she was in the dentist’s chair, and ended up at a fast food restaurant a few doors down, which he claimed was full of spiders. Another time, he wandered away from McDonald’s while my mother was in the restroom. The police found him near the drive-thru.
When I was contacted on Twitter about A Caregiver’s Guide to Wandering, I was interested in learning more. The guide was inspired by Sergeant Jacqueline Fortune of the Harris County Sheriff’s Office in Houston, Texas, who’s department was using Boerner, Inc.’s McGruff Safe Kids ID Kit to address wandering calls in the area they serve. The company decided to create a guide to help caregivers cope with the specific wandering issues associated with dementia.
The 12-page guide offers innovative, concrete tips on preventing wandering as well as developing an action plan to implement when a wandering incident occurs. The guide is designed to be used by agencies — it is in use in the VA Hospital in Palo Alto, California and in agencies in thirteen other states, including several Area Agencies on Aging.
I believe this guide could be useful to every dementia caregiver. If you know of an organization that works with the aging in your community, recommend A Caregiver’s Guide to Wandering as a resource for dementia caregivers.
Full disclosure: I received a complimentary copy of the guide for this review.