Elaine shares a tender reminder for all caregivers, past, present, and future: don’t forget your self-worth and be kind and forgiving of yourself when making tough decisions as a caregiver. Much time has passed since I cared for my parents, but I still feel pangs of guilt over some of the decisions I made.
I read another post recently about grief and guilt and that some researchers feel that the sharp pain of guilt may be the way some people attempt to maintain a strong emotional connection to their departed loved ones. I think there is some truth in this from my experience. Certainly the pain of guilt can overshadow more positive memories. Over time, we can make a conscious effort to let go of the guilt and accept the new relationship we have with those who have departed.
Image by Microsoft Copilot.
Filed under Guest posts
My 50th birthday was memorable in the best and worst of ways. The day before I turned 50, I traveled to Las Vegas and did the SkyJump at The Strat. It’s an 855-foot plunge from a platform on the 108th floor. Jumpers are attached to a cable and guide wire system for a controlled descent. It’s described as a vertical zip line.
It’s important to note that I’m terrified of heights. I can’t climb a ladder more than a few rungs without my knees shaking. It’s for this reason that I wanted to challenge myself and face one of my biggest fears. Letting go and stepping into the sky is a sensation like no other.
You can watch the video of my SkyJump below. Yes, I screamed all the way down, a mixture of fear and exhilaration.
It’s a good thing that I was still running on the high from the SkyJump because when trying to return home, I ran into the flight software issue that plagued airlines over the past week. I ended up spending early Sunday morning sleeping on the floor of the Las Vegas airport, only to have my flight canceled Sunday afternoon. There was a lot of sitting and waiting, which reminded me of all the times I spent with Mom in doctor’s offices and hospital waiting rooms. It’s a mixture of anxiety, dread, and boredom but my past caregiver experience has built up a reservoir of resilience for such situations. My main concern was not for myself but for my pets, and fortunately I was able to find a pet sitter to fill in at the last minute for my extended absence. I finally made it home Tuesday morning.
It’s not the way I would have preferred to end my birthday trip, but as one gets older and experiences the highs and lows of life, one learns how to better adapt to challenging circumstances.
For caregiver tips, check out my Caregiver Product Recommendations page, with a list of products that I used while caring for my parents.
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I’m turning 50 this week. Age may just be a number, but 50 feels like a significant milestone.
While I’m very grateful for my good health, I’m eager to move beyond the worst decade of my life. Within a year of turning 40, my mother died. A few years later, my nearly 20-year relationship ended in divorce. A year later, the coronavirus pandemic shut down the world and left us fearing for our lives and sanity. Just before Thanksgiving 2022, I was laid off from my job. I said a heartbreaking farewell to several beloved pets over the last decade of my life. My 40s was witness to a political firestorm in the U.S. that to my horror, gets worse with each passing day with no resolution in sight.
As I was reminiscing, I came across a blog post that I wrote when I turned 40, and what I hoped to accomplish during this decade of my life. I was prepared for cringeworthy commentary, but in fact, I accomplished all three of the items on my 40s list! I wrote and published a book (a total of 3 in fact!), I went to Ireland and N. Ireland, and I’ve grown my Alzheimer’s awareness advocacy efforts.
It reminded me of the worthy accomplishments that I achieved during my 40s, even if those things are often overshadowed by the barrage of difficult times. Reflecting on the good and the bad, I see a pattern emerge: good often follows the bad. For example, I was able to replace a job that was draining my energy with one that has allowed me to grow and gain new skills. I’ve been able to welcome new rescue pets into my life. Caring for my parents taught me many things about the healthcare system and the resilience of caregivers.
I’m not making a to-do list for my 50s. Instead I’m focusing on challenging myself to face my fears and be open to new experiences. I hope good will follow the bad for me this decade.
For caregiver tips, check out my Caregiver Product Recommendations page, with a list of products that I used while caring for my parents.
As an Amazon Associate I earn from qualifying purchases.
ICYMI: I’m participating in the Smashwords Summer/Winter sale. Get the e-book version of my award-wining collection of personal essays, The Reluctant Caregiver, for half-off (just 99 cents!) during the entire month of July. Enter the code SSW50 at checkout.
Filed under Memories
Recently I had the pleasure of being a guest on the Caregiver SOS podcast. We discussed the financial impact of caregiving, and I shared my own insights from caring for my parents.
The “p” word really is the key word here. We discussed how to prepare financially before a family healthcare crisis strikes. This is a topic that I feel is vital to discuss as a family and I’m grateful for the opportunity to share my story.
You can find Caregiver SOS on your favorite digital audio platform, or via the WellMed Charitable Foundation website.
Listen to Preparing for the Financial Impact of Caregiving with Joy Johnston on Caregvier SOS
For more caregiver tips, check out my Caregiver Product Recommendations page, with a list of products that I used while caring for my parents.
As an Amazon Associate I earn from qualifying purchases.
ICYMI: I’m participating in the Smashwords Summer/Winter sale. Get the e-book version of my award-wining collection of personal essays, The Reluctant Caregiver, for half-off (just 99 cents!) during the entire month of July. Enter the code SSW50 at checkout.
Filed under Awareness & Activism
Mom would have been 87 today. While Mom and I were opposites in many ways, I did gain an appreciation of music from her. She loved her Martin guitar and it survived several moves with her. She taught me to play a bit when I was a kid; it kept me occupied over those long, hot summers in California. After she died, the guitar was one of the mementos that I cherished the most, so it’s now in my home. I’ve attempted to play it again sporadically, and hope one day I can dedicate enough time to be able to play casually again.
I also inherited an appreciation of a wide range of music from my mother. She loved listening to everything from Mozart and Beethoven to Johnny Cash and Willie Nelson. She even tried to appreciate the music I loved growing up, and the music video craze of the 1980s. I think Cyndi Lauper was probably her favorite, because she was so fun and colorful.
Mom would be proud knowing I was still sharing our family caregiving story with others. You can listen to my appearance on the Caregiver SOS podcast on Spotify or your preferred podcast hosting service. I’ll write more about the appearance in my next post.
A reminder: I’m participating in the Smashwords Summer/Winter sale. Get the e-book version of my award-wining collection of personal essays, The Reluctant Caregiver, for half-off (just 99 cents!) during the entire month of July. Enter the code SSW50 at checkout.
Check out my summer book recommendations for caregivers for even more books to help you on your caregiving journey.
As an Amazon Associate I earn from qualifying purchases.
Filed under Memories
Imagine finding yourself homeless after sacrificing to care for a loved one. According to a recent NPR report, the tragic scenario is not that uncommon.
A person may need to move in with the care recipient if they are the primary caregiver and may not be able to maintain a job if needed for caregiver duties around the clock. In certain states, a family caregiver may receive a small family caregiver subsidy. This doesn’t replace a full-time income, but between a care recipient’s funds (such as disability or social security) and the caregiver subsidy, a person may be able to make ends meet. But once the care recipient dies, those benefits disappear, leaving the caregiver in a precarious financial situation.
If the care recipient rented their home, then a caregiver may find themselves having to move out quickly. Even if the care recipient owned their home, unless specific arrangements were outlined in a will or other legally binding document, the caregiver will have to negotiate with family members regarding living arrangements.
What may get overlooked is a caregiver’s own health issues and how long it can take time to restart one’s life, especially in the midst of active grieving. Those who were already living paycheck to paycheck may struggle to secure full-time employment upon re-entering the job market and the housing market in major cities is skyrocketing in price and running low on inventory. Any social services benefits that a caregiver seeks may take months to become active. This can lead to outcomes that otherwise they would never have imagined, such as homelessness.
A family medical crisis often happen with little to no notice. I encourage everyone to think about what they would do in such a situation, and make a plan on how to address financial and housing issues.
For caregiver resources, check out my dementia caregiver product recommendations. As an Amazon Associate I earn from qualifying purchases.
Image by Microsoft Copilot.
Filed under Awareness & Activism
Happy Mother’s Day to mothers of all kinds. I will be holding space for all of us whose mothers are no longer here.
On a related note, congratulations to Katie Engelhart, contributing writer for The New York Times Magazine, who won a Pulitzer Prize for Feature Writing for The Mother Who Changed: A Story of Dementia. With compassion and clarity, she shared this family’s complex and fraught journey with dementia. The piece raises important ethical and moral issues that should be discussed.
In case you missed it, I’m sharing again a poem about my mother that was published by The Prose Poem earlier this year. “Her Lists” is my way of coming to terms with some of my mother’s more eccentric qualities. Below is an example of one of her lists for reference.
Filed under Awareness & Activism, Memories
Managing caregiving tasks can be difficult even on a normal day, let alone during a severe weather event.
This is my annual reminder to make sure you and your loved ones are prepared for severe weather events. Growing up in California, I learned about earthquake safety both at school and home. When my parents retired to Ruidoso, New Mexico, they learned about the threat of wildfires. In Georgia, I deal with flooding and power outages due to thunderstorms.
Being prepared and having a plan is critical. The American Red Cross offers good tips on preparing for severe weather events. The Alzheimer’s Association offers an emergency preparation resource for those caring for loved ones with dementia.
Image generated by Microsoft Copilot.
Filed under Awareness & Activism
I recently had a poem about my mother’s infamous shopping lists published. You can read “Her Lists” at The Prose Poem.
My mother’s lists were like a look inside her busy bee brain. It may have seemed like an oxymoron, but my mother’s chaotic organization style worked for her. That was fine until I became her caregiver and then I was the one responsible for interpreting her wacky roadmap.
I wrote “Her Lists” during a poetry workshop a few years ago. I tinkered with it just a bit since then, but it mostly came out as is on first draft. If you’ve had challenging caregiving moments that you are trying to work through, engaging with them in a creative process may be helpful. Taking a look at such moments with a different lens may be healing and provide some sense of closure.
Feel free to share my dementia caregiver product recommendations. As an Amazon Associate I earn from qualifying purchases.
Filed under Memories
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The Memories Project receives 2 Sunshine Awards!
The Memories Project 