Tag Archives: caregiving

Book review: Fractured Memories by Emily Page

fractured memories

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.

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Aging in America: Crisis and opportunity

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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?

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Caring for the vulnerable

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.

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A time to listen

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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.

 

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Recognizing caregiver depression, isolation

Excellent article that outlines common symptoms of depression that caregivers might experience, and what to do about it. Caregiving can be isolating by its very nature, and loneliness and depression are common, yet many caregivers ignore their own symptoms because they are focused on taking care of others.

Stop Saying I Should Get Over It: Loneliness and Depression in Caregiving

via Loneliness and Depression in Caregiving — The Purple Jacket

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Marking National Family Caregivers Month

mom-joy

I learned a lot about caregiving from my mother.

Before November slips away, I want to recognize that this is National Family Caregivers Month. I love this year’s theme: “Take Care to Give Care.” Supporting family caregivers is something I believe strongly in, and I am grateful I have the opportunity to give back.

My development of the Respite Care Share concept continues, and I’m working on the poster presentation that will take place at the 2017 Aging in America conference. Along the way, I’ve met many dedicated family caregiver advocates. We have a long ways to go, but as with most things, a grassroots-level, community-based approach will generate quicker results than waiting for government action.

The Caregiver Action Network offers good tips for family caregivers on managing their own health.

  • Stress: Family caregivers often face a tremendous amount of stress, yet ignore their own mental and physical health. I was certainly guilty of this when I was a caregiver. It’s important to take steps to minimize and manage stress, and promptly address any health issues that arise.
  • Healthy lifestyle: It’s easy to throw out healthy habits like a nutritious diet and regular exercise when you are overwhelmed with family caregiving duties. But a poor diet and sedentary lifestyle can make one feel sluggish, and more vulnerable to experiencing health consequences from stress. There was a walking trail adjacent to my mother’s condo, so I went almost daily for walks, which helped relieve stress.
  • “Rest. Recharge. Respite.” I love this mantra from the Caregiver Action Network. My sleep was disrupted every day when I was caregiving for my mother, and there was no way to avoid that (leaking colostomy bags always seem to occur at 3 a.m. and will not wait!), but I tried to make sure I got a set amount of hours of sleep each day. I did take breaks when Mom was stable enough, and that really helped.

A big thank you to all of the family caregivers out there, who are facing another hectic holiday season. There are many people focused on providing greater support for family caregivers, so don’t give up hope.

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Aging in place not just about home’s interior

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The “portal to hell” aka the crawlspace where the water heater is located.

As I wrote about in my last post, caregiving can give you tunnel vision, and while I was busy tending to my mother’s every health need, I overlooked some basic household duties, like changing that darned furnace filter.

But another thing I had to deal with on my recent visit to what was my parents’ condo made me realize that aging in place is not just about retrofitting a home’s interior. When I arrived and turned on the kitchen faucet, I immediately noticed that the hot water had a very strong sulfur odor. I Googled the issue and found that it is common in cabins and other kinds of vacation rental homes, where the water sits unused for long periods of time. Basically, the water sitting in the water heater tank is an ideal incubator for bacteria, which, while harmless to humans, creates that godawful rotten eggs smell.

The simplest solution involves flushing out the water heater with bleach or hydrogen peroxide, which kills the bacteria.

As I searched for plumbers, I began to wonder, where the heck is the water heater?

By process of elimination, I figured the square door underneath and to the side of the condo must be where the water heater was located. The photo above is actually a neighbor’s unit, but it looks just like mine. What I couldn’t picture was how a water heater fit in such a small space.

When the plumber came out, the mystery was solved. The wood door had to be unscrewed with a power tool, and then the plumber, a pretty tall guy, angled his way through the portal. I stuck my head inside and saw that the crawlspace was quite large, the entire length of the two condos that are connected together. There were several discarded water heaters under there, a virtual graveyard. The plumber wanted to show me how the water heater was leaking, which required me to climb inside.

I wasn’t sure I was going to be able to do it; I’m not claustrophobic and am in decent shape but I am clumsy, and this was a very awkward hole to crawl through. Somehow, I managed to squeeze through without injuring myself, then was immediately concerned about how I would get back out.

The plumber told me I could flip the breaker on the water heater when I was headed out of town so I didn’t have to crawl back down there. That was another adventure, finding the circuit breaker. It was located in a storage closet outside the condo, and inexplicably placed in the back corner, meaning you had to be careful about what you stored in the closet so you could squeeze your way to the back and reach the breaker panel.

The entire debacle made me think about aging in place, and how important it is to examine the exterior and the interior of the home your aging loved ones are residing in or wish to move to, and look for red flags like this bizarre water heater setup. Take into account things like stairs, crawlspaces and anything else that is difficult for someone with limited mobility to access. Ideally, a homeowner would have convenient access to things like the furnace, the water heater, air conditioner, circuit breaker, etc. in case of emergency.

It’s definitely something I’ll think about when looking for a retirement property. No creepy “portals to Hades” for me!

 

 

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