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.
Digital estate planning has become an essential part of end of life considerations. In our tech-driven society, you may spend more time and have more information stored in digital form than you do physical form.
As a Gen X member, I’m one of the last generations to have a foothold in both worlds. For example, my diaries from junior high and high school were kept in physical journals, and photos from that time period were physical prints. As an adult I’ve fully embraced technology and have most of my writing and photos, along with my financial and household information, are stored digitally. I will need to select a person comfortable with both physical and digital documents to handle my estate.
There’s no official method when it comes to digital estate planning. 1Password offers a guide with helpful tips. Maintain a list of your digital accounts with access information, and store that information somewhere secure. If you prefer, you can grant access to your online password manager to your digital estate executor. Only the person you choose to manage your digital estate should have access to that information and understand your wishes as to what to do with your accounts, personal writings, etc. Be very clear about what to do with potentially sensitive information that could be hurtful to others if discovered after your death.
Digital estate planning action steps (from Perplexity AI):
Take Inventory: List all your digital assets and account details.
Decide Asset Fate: Determine what should happen to each digital asset.
Appoint Executor: Choose a trusted digital executor.
Create Digital Will: Document your wishes legally.
Store Securely: Keep your digital estate plan in a safe and accessible place.
Update Regularly: Review and update your plan periodically.
Communicate: Inform your loved ones and executor about your plan.
Also something to consider are any messages, social posts, or works you would like shared after your death. Many social media services allow accounts to be converted to a memorial account. Dementia awareness advocate Wendy Mitchell wrote a final farewell blog post that she instructed her daughters to publish after her death.
Where digital estate planning can get tricky is when a person has dementia. If the person had no digital estate plan, it may be a challenge for family members to gain access to accounts, because login information may be stored haphazardly or be unintentionally discarded. Those who did create a digital estate plan may change details as their dementia progresses. My father was not digitally-minded at all, but I remember how I came across important account information mixed with junk mail stuffed in plastic shopping bags under the bed.
For those who need assistance, check out the resources offered by Memory Banc. Founder Kay Bransford, who also manages the Dealing with Dementia blog, was a caregiver for her parents who were diagnosed with two different forms of dementia, so she understands the challenges firsthand.
Every person with a digital presence should create a plan on how they wish for their digital information to be handled after their death. Communicate with those who will be handling your digital estate to make sure they are comfortable with the role and the responsibilities. If you find yourself designated as the executor for a digital estate, organize and process accounts by type and importance, and reach out to estate officials or the estate attorney if you have any questions.
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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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.
As an Amazon Associate I earn from qualifying purchases.
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.
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.
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.
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.
It has been sweltering in Atlanta for the past month, and summer just began. When it’s too hot to be outside for long, I’m going to turn to one of my favorite pastimes that often gets pushed to the side: reading. I read all day as part of my job, but reading for pleasure is something that I wish I did more. My Kindle is full of books I haven’t started yet, and I have plenty more on my wish list. Reading is something that makes me feel close to my dad, and I feel I inherited my love of books from him.
I could write a book about the many amazing books available for dementia caregivers, but here are my top recommendations:
I’m honored to have “At the Crossroads,” a poem about my father, included in Poetry for the Dementia Journey: An AlzAuthors poetry Anthology. This new collection was published in June and is available on Amazon. Check out AlzAuthors for a large and impressive library of books that inform and support dementia caregivers.
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.
If you’d like to honor the memory of dementia awareness advocate Wendy Mitchell, who died earlier this year, consider one of her books. One Last Thing is aptly titled as her final work. Somebody I Used to Know is her best known and highly acclaimed book.
Finally, another shameless plug: Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementiasis a wonderful collection that captures the highs and lows of the dementia caregiving journey. I’m honored to have a story about my father, “French Toast,” included in this edition.
What books are on your summer reading list?
For more suggestions beyond books, 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.
Summer officially began this week, but here in Atlanta, the heat arrived a month ago. Summer here is brutal and unrelenting and requires one to plan outdoor activities carefully. Humidity brings another level of misery and danger to summer heat waves. Beyond the standard temperature and heat index readings, it’s important to take into consideration heat and humidity with a more accurate measurement such as the wet bulb temperature; check out the readings for major cities.
Whether it’s the broiling triple digit temperatures out west or the oppressive humidity of the south, summer creates multiple challenges for caregivers. Keeping elder loved ones safe both indoors and out during the summer months requires smart planning.
Before a heat wave, check on your elder loved ones and make sure their homes have adequate cooling options. Keep in mind that elders on a tight budget may be reluctant to turn on the air conditioner, but that ill-advised decision could cost them their lives. Energy-efficient air conditioners are now available. Smart thermostats can help you monitor the temperature remotely and adjust if necessary.
Battery-powered handheld fans can offer a mobile form of relief both indoors and outdoors. I find that even with air conditioning, a tabletop fan helps keep the air moving in upper floor bedrooms, where it can get stuffy quickly. In milder climates, such as where my parents lived, oscillating fans may be sufficient to keep rooms comfortable.
Outdoor safety during the summer is multifaceted. Elders are more susceptible to heat, but spending time outdoors for short periods can offer important health benefits. Timing is key: aim for outdoor time in the early morning or in the evening after the sun goes down. For those who garden, wearing protective clothing and a hat is important, as is staying hydrated and taking breaks. These neck fans can help one cool down quickly when doing outdoor activities.
During summer heat waves, staying hydrated is essential. I witnessed my mother suffer the consequences of dehydration and the symptoms resembled dementia. From my experience, it can be difficult to encourage older people and those with dementia to drink enough fluids. These Stanley water bottles come with convenient handles and some models include built-in straws for ease in sipping. For outdoor adventures during the summer, carry hydration drink mix pouches such as Liquid I.V. which offer a quick electrolyte boost.
Mosquitoes aren’t just annoying, but can carry West Nile Virus, which can be deadly in older people. Consider a mosquito repellent device in addition to citronella candles, mosquito-repellent plants and clothing to keep loved ones safe while enjoying their home’s outdoor spaces.
I hope these suggestions help you plan for safe and enjoyable time outdoors this summer with your elder loved ones.
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.
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The Memories Project 