I received a letter from my Uncle Jim this week, updating me on how my Aunt Peggy is doing. She is my father’s youngest sister and has dementia. My father’s side of the family has been decimated by the disease and Peggy has been living with the disease for years. Jim has been an amazing caregiver to her and patient in navigating the choppy waves the disease presents. She is doing as well as can be expected, and is able to take advantage of resources offered by Australia’s stellar healthcare system.
A few years ago, I sent Jim a copy of Chicken Soup for the Soul: Living with Alzheimer’s and other Dementias. A story of mine about my father, French Toast, is included in the collection, but I also thought Jim might appreciate the wealth of information that was shared by the dozens of dementia caregivers who contributed to the collection. In his recent letter, he mentioned the book and the information I shared about my father’s struggles with swallowing in the end stage of the disease. He thanked me for sharing the information and how it had been helpful while caring for Peggy.
Caregiving can feel very isolating. When caring for someone with dementia, that isolation can feel even greater, as friends and sometimes even other family members maintain a distance, not sure how to help or struggling to accept the diagnosis. But in those moments you might be learning something that, when shared with others, can make their caregiving lives easier.
Don’t be afraid to share the lessons you have learned on your caregiving journey. Knowledge is a precious gift and what we learn from fellow caregivers can be more meaningful than what we learn in books.
When we are actively caregiving, it can sometimes feel as no one cares or no one understands what we are going through. As a former family caregiver, I now dedicate my time to not only telling my caregiving story, but learning about other caregiver’s journeys. This week I was blessed with two opportunities to share my story.
I’m a proud member of AlzAuthors, and this week I am the featured guest on the group’s excellent podcast series, Untangling Alzheimer’s & Dementia. If you are looking for a support as a caregiver, I encourage you to check out the podcast as well as the bookstore which offers books about dementia covering a wide range of topics and genres. I’m honored to have my book, The Reluctant Caregiver, included in this collection.
I also did an interview that is featured on Bella’s Blog, part of the Joe & Bella’s retail website. The company describes itself as “a one-stop shopping site for older adults and those who care for them.” The store sells everything from adaptive clothing to safety and mobility items and bathing supplies, all thoughtfully curated by aging and caregiving experts. The first of my two-part interview was posted this week. I discuss the details surrounding my father’s dementia journey and how it impacted the entire family. Use the discount code “Joy” to get 10% off your first purchase at Joe & Bella.
It’s important that family caregivers hear stories from others who have gone through a similar situation. It helps one feel less isolated and can help empower those who are struggling. I’m always grateful to share my caregiving story, but the most rewarding part for me is connecting with others through their own caregiving experiences. We have so much to learn from each other.
I’m always interested in new technologies that can help elders and their caregivers. So when I received an email about Amazon Alexa’s new Care Hub, I took some time to look at its features.
Smart home devices such as virtual assistants have become popular over the last several years, and their ease of use means a wide range of people, from children to older people, can adopt them without much of a learning curve. The privacy concerns are real and should not be ignored, however many find that these devices are helpful in their daily lives. I have one of the older Amazon Echo devices and I use it to automate the house lights and to use as a timer when I’m cooking.
The new Care Hub requires the elder user to have an Amazon Echo device in their home and for the caregiver to at least have the Amazon Alexa app on their phone. Echo devices start around $50, though you can get older generations at a discounted rate, especially during Black Friday or other deal days. For example, a deal right now offers an Echo Dot for $29.99.
A customized activity feed is linked with alerts so that you can monitor when your loved one first interacts with the device each day. If activity is delayed, then you can check up on them, either through the Care Hub or by phone. Alexa will also notify caregivers if their loved one asks for help, allowing the caregiver to check on the person and call emergency services if necessary.
There are a lot of things that Alexa can do to help elders, from offering pill reminders to adding items to the shopping list and making hands-free calls without having to remember numbers.
I haven’t had the chance to use Amazon’s Care Hub because I’m not currently caregiving for anyone, but would love to hear feedback from anyone who has had the chance to try it.
Summer is here, and while outdoor activities remain in flux due to the coronavirus pandemic, now is a good time to make sure you have your summer safety plan in place.
Every year, several hundred people die from extreme heat, according to the CDC, and the majority of victims are older. Increased heat sensitivity and risks associated with chronic health conditions and prescription medications make older adults more prone to heat-related issues.
Another issue is the lack of air conditioning. My parents’ condo did not have air conditioning, and while summers in their mountain community were generally mild, there were heat waves that would send temperatures soaring into the high 80s and low 90s. After they had passed, I spent a week or so there during one of those heat waves and even with a new fan that I bought, it was very uncomfortable. But what may be uncomfortable for someone younger can be dangerous or even deadly for those over 65 or in poor health.
Even more heartbreaking, some older people on a fixed budget fear the high utility bills associated with running an air conditioner, so even though they have one, they don’t use it.
Here are some things to consider as a caregiver when preparing your elder loved ones for the summer heat:
What are their cooling options at home? Are they adequate? Keep in mind that with coronavirus restrictions, cooling stations that some depend upon in their community may be closed. Have an alternative plan if it becomes too hot for your loved one to stay in their home.
Exercise is still important. Try to arrange walks or other outdoor activities in the early morning or evening hours, when it’s not quite as hot. Keep outdoor activities brief and make sure to bring water so your loved one stays hydrated. Focus on indoor activities like yoga or dancing to keep older adults active.
Provide shade: If possible, provide a shady spot for your loved one to spend time outdoors at home. Make sure elders wear breathable, light-colored clothing and wear a hat when outdoors.
Hydration is key: I found it was tough to get my parents to drink water. It is crucial that older people drink enough water, especially during the summer. Dehydration can occur more quickly than you think and have serious health consequences. Consider adding a lime or lemon slice to sparkling or still water to make it more interesting, or make a pitcher of unsweetened herbal iced tea to encourage extra fluid consumption.
Hope everyone had a good holiday and that your new year is off to a good start.
The fact that there is a caregiver shortage is not new; however a Quartz article posted this week has put the issue back on the national radar. The article cites the slowing population growth, along with increased longevity and a decrease in immigration among the issues that will potentially trigger a caregiving crisis. By 2030, that shortage may grow to more than 100,000 caregivers for the elderly, according to Quartz.
Here are some ways we could address this major healthcare issue:
Pay caregivers a livable wage: In order to recruit new generations into a caregiving career, we’re going to have to revamp the woefully inadequate pay scale. Professional caregivers deserve to have decent pay, benefits, and access to training and educational opportunities to grow in their fields. Caregiving should no longer be a job of last resort; it should be a career choice one takes pride in.
Immigration policies: We need a fair immigration policy that offers those interested in becoming U.S. citizens an opportunity for a stable career in a field with severe shortages. Too often, immigrants who become caregivers, especially those with questionable legal status, are taken advantage of and paid below minimum wage without benefits.
Offer incentives: Just like with geriatric or rural medicine, caregiving is not a “sexy” career choice. Certainly it can be rewarding, but in order to fill the large care gap we may need to get innovative. I’m a fan of the Care Corps concept, and a student loan forgiveness program in exchange for serving as a caregiver could attract candidates.
Offer better support for family caregivers: Realistically, the bulk of caregiving duties will likely continue to fall on family members. We need to support them better, by employers offering flexible work schedules and the government embracing universal family care. A tax credit would help some with the financial hit family caregivers suffer.
There is no easy fix, but we definitely need to keep pushing this topic into the general conversation and advocate for common-sense actions and programs to alleviate the caregiving shortage and burden on family members.
I’m always amazed at just how universal the experience caregiving is, and how everyone has a story to tell about that experience. It’s so interesting to attend a conference and come into contact with so many people from all walks of life, and when they find out I write about caregiving, they are typically eager to share their own stories.
As Rosalynn Carter to eloquently said, “There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”
Just wanted to share this observation for caregivers out there who may be isolated and are feeling alone. You are most definitely not alone. There is a large, passionate, imperfect but striving to do their best tribe of family caregivers out there.
It’s hard for me to believe that five years have passed since my father’s death. So much has happened in those five years that I feel almost like a different person, or that I experienced December 20, 2011 in a different lifetime.
Little did I know at the moment I learned of my father’s death, in the newsroom of the Atlanta Journal-Constitution, on a cold and rainy Tuesday, that six months later, I would become caregiver for my mother. Even at that moment, the colon cancer was likely growing inside of her, waiting to make its ugly appearance in our lives. I thought I would spend 2012 grieving for my father, but instead, I had to shelve my grief in order to care for my mother.
I never expected to be virtually unemployed for well over a year after my mother fell ill. It was my father’s death that allowed me to pursue new career opportunities, as I had not wanted to take a new job when I knew he may pass at any moment. It turned out to be a bad move, and when Mom required emergency surgery, I was forced to quit after just two months, to go tend to her in New Mexico.
If I had guessed what my life would be like five years from that dreaded day in December 2011, I would not have imagined my mother being dead for a year and a half. She was 74 at the time of my father’s death, and appeared to be in good physical shape. I was most concerned about her loneliness and depression after Dad’s death.
Sometimes it all seems like a bad dream, but of course, I know all too well that it was real life. Good things have happened over these five years: my writing won an award, I secured full-time employment again, I’m slowly but surely crawling my way out of debt. I’m using my experiences, both positive and negative, in the caregiver advocacy role that I now cherish. The past five years have been turned into essays that have touched people and generated conversation around the topic of caregiving.
I certainly would never want to live the past five years of my life over again, but I am a better person for surviving them, and for taking the lessons my parents taught me to help others in a similar situation.
It started out with good intentions. Facebook created a feature called “On this Day” that reminds users what they had posted a year ago, two years ago, etc. The prior year posts are flagged in your newsfeed, and you can choose whether to share them with your friends or keep it private.
While no doubt the idea was to remind people of happy memories, such as births, weddings and family vacations, for some of us, our Facebook timelines are filled with depressing posts.
A Facebook “On this Day” moment capturing my mom’s crazy shopping list.
If you are a long-term family caregiver, your timeline may look more like a roller coaster of memories, with good, bad and the ugly all present.
I’ve ran into a few issues with prior posts that brought up memories of my mother, and that summer of 2012 when she was recovering from cancer. There have also been some “On this Day” posts featuring departed pets. Not always the thing you want to greet you as you start your day.
Being on Facebook is a part of my job so I cannot simply ignore it.
As it turns out, other Facebook users were also having a bittersweet experience with this new feature, so now there is a filter option. Users can filter out names and/or periods of time to skip over painful memories like deaths and divorces.
If only it were that easy to filter out bad memories in real life. Still, I believe that the ups and downs of life are all part of the experience of being a human being. While I am glad Facebook added the filter feature, I haven’t actually used it yet.
If I was strong enough to survive the actual experience, I can also survive the memories.
My mother’s health took a big turn for the worse this week.
The hospice nurse expects her to pass in days, maybe a week, though her heart is very strong, so she could last longer.
For her sake, and mine, I hope that the suffering is not prolonged.
She is now totally bedridden, somewhat delirious and a new pain complaint has popped up the last two days. She now complains of severe head and neck pain. The nurse cannot figure out what may be causing it. It is unlikely that the colon cancer, if it has returned, spread to her brain, though it is a possibility.
But the morphine is not really touching the head pain, even when dosed hourly. She is so “zonked out” by the pain meds yet still is pointing to her head and grimacing. That is tough to watch.
Mom’s face has been taken over by that ghoulish death mask. Her eyes are starting to look beyond.
But her heart continues to beat hard and strong in her emaciated chest.
In one of her lucid moments, my mother asked what had happened to her. And to that, I had no good answer.
Last Monday, I tried to call Mom but her line was busy. This is not that unusual, so I didn’t think too much about it. A few minutes later, I received a call from an unknown number. By the time I Googled it and saw that it was the Lifeline number, the call had gone to voice mail. I immediately called back without waiting for the message.
Mom had slipped off the bed and fallen. She fell on her butt, thankfully, but was still sore and shaken up. Fortunately, she was checked out by EMS and seemed ok, so no ER visit was necessary.
Still, I fear it is the beginning of the “no longer can live at home alone” phase. Mom’s done pretty well this past week, all things considered, but the tricky part for caregivers is knowing when to make these key decisions for a loved one’s care.
Beautiful Elle, RIP.
At the same time that was going on, our 16-year-old cat was rapidly declining. A cancerous lesion on the roof of her mouth meant she could no longer eat without discomfort, even with pain medications. Sadly, over the last few years, I’ve become used to the euthanasia process. While thankful that we have that choice for pets, it is still brutally heartbreaking to have to make that decision.
My mom wishes she could be like the cat and just go on. She says she is ready and she is not afraid of what is beyond. She is miserable with being in constant pain, and having a loss of appetite and fatigue. The doctors are no closer to diagnosing her than before. Is the cancer back? She’ll have to have a colonoscopy to determine that, but at barely 100 pounds and weak, she’s in no shape for the preparation.
She also hates to be a burden on others. While certainly I can’t deny the stress the last few years have created, I don’t want my mother to feel guilt over something she cannot control.
With wry humor, I know that we are going to have to get a bigger shelf to hold all of our memorials, for people and pets lost over the years. It’s getting crowded up there.