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.
I’ve been at the Aging in America conference all week and it has been sobering and inspiring to be surrounded by so many smart, compassionate, and determined people. There are many battles to fight when it comes to issues surrounding aging and caregiving, but we have an army of advocates ready to fight for those who have been ignored by society and by government for too long.
There were recurring themes that came up at every session I attended. Here are some of the main areas of concern:
- Health care: While it may be a political issue to those in Congress and to some voters, for those who work with seniors, the disabled, and the poor, health insurance is truly a do or die decision. The concerns about the current administration and the Republican’s proposed ACA repeal plan were explained through data and powerful anecdotal evidence. However you may feel about the ACA, and certainly it is not perfect, with some people hit with skyrocketing premiums and limited choice, there were millions of people who were able to get the treatment they desperately needed, mainly because of the ACA’s expansion of Medicaid. Don’t think you’ll need Medicaid? As one expert put it, with long-term care so expensive and not covered by Medicare, many of us will end up on Medicaid at some point, if we live long enough.
- Diversity: While diversity can sometimes be an empty buzzword, I found that the attendees of the Aging in America conference take diversity issues very seriously. From how a doctor discusses Alzheimer’s care to a Latino family versus a Caucasian family to senior housing that welcomes the LGBT community, our aging policy must reflect the diversity of our country.
- Help for caregivers: The issue that I’m most passionate about was also a major topic of discussion at the conference. There are many individuals and organizations dedicated to offering relief to caregivers, in the form of grants and other financial assistance, better training and support, and through respite care. I received positive feedback about my Respite Care Share concept, and I hope through the networking made at the conference, I can help take the concept to the next level.
The conference wraps up Friday, and I hope that the brainstorming that took place in Chicago this week will lead to positive impact in your communities.
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?
With so much legislative and political uncertainty swirling throughout the U.S. and the rest of the world, we as a society will have to step up and help the vulnerable members of our population. The good news is that there are people already doing just that.
Many of you probably heard about Chris Salvatore, who scored viral fame for taking care of Norma, his 89-year-old neighbor with leukemia. He became her primary caregiver as the woman had no relatives to care for her. Norma died in February, but she was surrounded by the love of her neighbor and many fans on social media.
Another story that received less attention involves a man with dementia who was living alone in Kentucky. Sergeant Jon Sterling did regular wellness checks on the man, and discovered that it was time for the man to be moved into a secure facility. While the man was a veteran and had social security benefits to offset the monthly charge of the facility, moving costs prompted the police officer to start an online fundraiser. The $5,000 goal was reached within 24 hours.
Two men from very different worlds reached out to help a vulnerable member of their community. Compassion is part of the human spirit just as much as some of our more negative attributes. I hope that people will be inspired by these examples to help those in need.
Whatever your opinion of CNN, I give them kudos for the investigative report, “Sick, Dying and Raped in America’s Nursing Homes.” This is a subject few want to discuss, but it is happening more often than one realizes. I am grateful for the network for shining a spotlight on these crimes that have often been swept under the rug.
The accounts are harrowing and sickening, but I encourage anyone who has a loved one in a nursing facility or is caring for an aging relative to read this report. Armed with knowledge of the despicable acts that have occurred at these places, you will better be able to protect your loved one from such crimes.
Don’t expect the facility management or even law enforcement to be much help. Nursing homes are reluctant to admit wrongdoing, as it can open the company up to lawsuits and cause them to lose precious Medicaid and Medicare funding. Law enforcement claims their hands are tied, as residents with dementia make unreliable witnesses. (To this latter defense, I counter, what about infants and toddlers? They can’t provide detailed accounts of abuse either, yet those cases more often result in charges and convictions.)
Be vigilant, and don’t be afraid to demand an investigation if you suspect abuse of any sort. While I am a strong caregiver advocate, I have no sympathy for those who prey upon the elderly. Yes, the pay is low and the job is grueling, but there is absolutely no excuse for abuse of any sort. Can you imagine how frightening it would be, to be bedridden, perhaps losing your mind to dementia, and then find yourself attacked in the middle of the night by a caretaker? I’m even more glad now that I quit my job so that I could visit my mother each day while she recovered in the skilled nursing facility. But not everyone can do that, nor should we have to.
We must demand better protections and more accountability for nursing home residents. As one heartbroken daughter said, the nursing home worker who raped her 83-year-old mother with dementia stole her last shred of dignity. He received an 8-year prison sentence after pleading guilty to third-degree sexual assault. While that was a longer sentence than some of the other rapists discussed in the CNN report, he had been accused of similar crimes before, but was never charged. That’s why it’s so important to fight for the protection of our loved ones, because we may be able to prevent future crimes against one of our most vulnerable populations.
In the post-caregiving phase of life, we can feel pulled in opposite directions. There is often a natural response to retreat from the outer world and try to process all that we’ve been through. As time marches on, we may feel the call to help other caregivers, and that means opening ourselves up to listening to other people’s experiences.
Over the last several years, I have followed many other caregivers via blogs and have been a virtual witness to their highs and lows. I am a member of a caregiver Facebook group and admittedly sometimes I scroll past the heartbreaking posts because there is only so much I can take. I would love to be able to help each and every one, but of course that’s impossible.
Recently, I had the opportunity to attend an in-person support group at Amy’s Place for dementia caregivers, and it was a moving experience. I was there in part to hand out caregiver gift bags that are part of my Respite Care Share project, but my most important action that night was simply listening.
It was disheartening to hear that many of the issues I encountered with my father’s care are still going on today, five years later. Some of the caregiver’s stories brought back painful memories. But there was a power in sharing stories, exchanging tips and advice, and offering moral support.
Family caregivers take on so much, but often find few opportunities to vent. Whether you attend a formal support group or just offer a sympathetic ear to a friend or family member, make an effort to be a listener on a regular basis. It can mean the world of difference to those going through difficult times.
Aging is a bipartisan issue. Whether you’re a Republican, Democrat, Independent, a member of another political party or reject all such labels, all of us will experience the consequences of aging, save for those who meet a premature death. Even those who don’t experience old age themselves may have dealt with aging issues when caring for a loved one.
As Washington deals with political upheaval, the lives of seniors hangs in the balance. The work to address senior and caregiving issues must continue, no matter who resides in the White House. I subscribe to the Alzheimer’s Impact Movement newsletter, and their January update provided a list of Congressional members who play an important role in committees that address Alzheimer’s and aging issues.
In addition to your local representatives, reaching out to the Senate Committee on Aging is a good place to begin. The bipartisan leadership includes:
- Chair: Sen. Susan Collins (R-ME)
- Ranking Member: Sen. Bob Casey (D-PA)
Their contact information can be found on the committee’s website, along with an online submission form.
According to AIM, just this past week, 12 senators sent President Trump a letter to encourage greater investment in Alzheimer’s research and introduced a resolution to make address Alzheimer’s issues an “urgent national priority.”
So call your representatives, email them, write letters, reach out to them on social media … make your concerns known. I do believe personal stories make a difference, and can help fuel greater legislative effort.