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.
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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.
Today marks nine years since my mother died. In ways it feels like a lifetime ago, with all that has happened across the globe over the last several years. Mom picked a good time to depart as she would have hated to see so so much strife and rage in the world.
Yet I can still feel the raw emotions from the day of her passing. Grief isn’t a wound that heals but a new path in life you learn to navigate.
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.
A short film by the UK-based Alzheimer’s Society has generated a wide range of strong emotions from those with dementia and their families. In addition to the original video campaign embedded above, there is also an extended cut version and a profile of a couple who faced a heartbreaking FTD diagnosis.
The crux of the criticism comes from the film’s fatalistic point of view, framing dementia as a series of deaths that occur when a person loses the ability to do something they loved or remember something fundamental to their life, such as remembering their child’s name. With these series of “deaths”, one will need an organization for support, which is where the Alzheimer’s Society says it will be there for families impacted by dementia again and again.
George Rook, a patient activist living with dementia, has posted his eloquent rebuke of the film on his blog. It’s garnered a lot of support within the dementia community, and he has since written more posts related to the film that I encourage you to read.
The Guardian also wrote a column about the controversy, with the columnist agreeing that the film is uncomfortable to watch and concluding that “the advert went too far, but that one of the many issues with the public discourse about dementia is that it can be overly sanitised.”
Below is the Twitter/X post from the Alzheimer’s Society which I’m including so you can read the replies. As you can see, the video sparked a passionate discussion from those living with dementia who felt personally offended that they were being portrayed as the living dead when in fact they are living with dementia reasonably well.
In the Alzheimer’s Society response to the video’s controversy, it states the need for a societal wake-up call when it comes to dementia. It’s the leading cause of death in the UK and according to the organization, only 10 percent of people are aware of that sobering fact. I know I was not aware of that statistic.
If you’ve read my book, The Reluctant Caregiver, I think you’ll know my take on the film. While I can understand some may find the tone of the film harsh, I do agree with the need for a wake-up call. That’s why I wrote about the difficult moments in my caregiving experience, even if that has led to some reviews that the book is depressing.
In the US in particular, the financial impact of dementia is something many people are woefully unprepared for as they think Medicare will cover expenses. People don’t fully appreciate the challenges of living in place nor are they prepared for the astronomical cost of memory care. As for the “series of deaths” a person with dementia may experience, there is a real sense of loss when the disease takes away people’s abilities and aspects of their personality. As I wrote in my book, it did feel like an imposter had taken over my dad’s body. When he looked my mother straight in the eye and asked where she was by name, the heartbreak I experienced was worse than when I viewed his body in the morgue.
My mother dealt with the brunt of my father’s dementia. From what my mother, the eternal optimist, told me, there were not many good days. I’m sure she didn’t even share all of the horrific moments, though some she couldn’t hide, like when my father punched my mother in the jaw as she tried to get him ready for bed.
Once he was heavily drugged in the memory care center, his aimless shuffling through the hallways with the lost, vacant stare in his eyes did make him seem like a zombie in some ways. I know some people may find that portrayal offensive, but that was my honest reaction at the time.
I’m encouraged by those with dementia who continue to lead rewarding lives, and if I get the dreaded disease one day I hope I will follow their example. Unfortunately, that was not my family’s experience with the disease. It not only had a dire financial impact but I’m also convinced that the toll of caring for my father played some role in my mother ignoring her own health issues and being diagnosed with stage III colon cancer just six months after his death. I live alone and don’t have children, so for those of us without a support network, thriving with dementia may be a challenge.
We live in polarizing times when we refuse to recognize that multiple things can be true at once. There are some people living well with dementia, and maybe that should be the focus of the Alzheimer’s Society’s next awareness campaign. Kudos to these people and we should all be working towards the goal of improved treatments and better support resources so that living well with dementia becomes the norm and not the exception. But there are also those whose lives, and their family’s lives, are devastated by dementia. Those stories should not be buried because they make some people uncomfortable.
Each person with Alzheimer’s or another form of dementia will experience the disease in their own unique way. So will their families. We should encourage those from across the spectrum of dementia experiences to share their stories, the good, the bad, and the ugly.
I was saddened to learn that Wendy Mitchell, who so generously and insightfully shared her experience living with dementia through her blog and books, died this week. However, I take solace in knowing that Mitchell left this world in a way that honored the agency she still had over her own life.
I mostly knew Mitchell through her blog, Which me am I today? The blog’s title captures the dementia experience so well. I enjoyed the photos she shared from her sunrise walks, which included gorgeous skies as well as a variety of birds and other animals. Mitchell was dedicated to her nature walks, writing that the “miracle of nature would thin the glue in my head and bring me alive again.” Mitchell shared the full spectrum of the dementia experience, demonstrating that memory impairment does not prevent those with dementia from continuing to feel a wide range of emotions, maintaining a sense of humor, and achieving new milestones.
At the same time, Mitchell was clear-eyed about what the end of the dementia journey looks like for many people, and she was determined to not have her life end that way. She had been making her end of life plans for awhile, consulting with family and getting their blessing. Because assisted dying isn’t a legal option in the UK, Mitchell planned to travel to Switzerland and utilize the services available at Dignitas. But a recent fall in which she spent a week in the hospital derailed those plans. With her mobility limited, Mitchell chose to stop eating and drinking. You can read Mitchell’s final blog post which goes into detail about her decision process. I encourage you to read it, even if you disagree with her choice.
For the record, I support assisted dying and would consider that option for myself. I think it’s a decision for an individual, in consultation with family members, medical providers and spiritual advisers to make, NOT government officials.
Mitchell shared on her blog what she hoped to accomplish by sharing her dementia journey: “What I want is not sympathy. What I want is simply to raise awareness.” Mission accomplished.
This is Sarah and Gemma, Wendy’s daughters. Our mum died peacefully early this morning. She wrote a blog post before she died so you can read about it from her perspective. Sarah and Gemmahttps://t.co/PgQCUFKK6H
Wishing you and your family a peaceful and restful holiday season. The cats managed to negotiate with Santa Claus and get a gift early. I would love to be a cat with my very own soft, cozy house for endless naps!
For those grieving this holiday season, I fully understand and send you supportive and healing energy.
If you need last-minute gifts, you can get the e-book version of my award-winning personal essay collection, The Reluctant Caregiver, for just 99 cents if you purchase through the Smashwords 2023 End of Year Sale. The deal is available through Jan. 1, 2024. For the kids, you can grab the digital version of my children’s book, Slow Dog, for $2.99 on Amazon Kindle.
If you are feeling a bit sad today, I hope this puts a smile on your face!
The years following his death have been tough, both on a personal and global level. I am grateful for having found such an amazing community of dementia caregivers and advocates who are tirelessly working to gain better resources and support. No one welcomes a diagnosis of Alzheimer’s or other forms of dementia, but my family’s experience has opened my eyes to challenges in our health care system that I otherwise would not have known about.
I began The Memories Project blog in honor of my father and will continue to advocate for better dementia care treatment and family caregiver support.
On December 20, I will mark the 12th anniversary of my father’s death. Losing a loved one during the holiday season can usher in a mix of grief and nostalgia during subsequent holidays. There’s also a group of people who are marking their first holiday after the passing of their loved one.
Each person processes grief differently, and each person will have to decide what feels right when marking the holidays without their loved one. Over time, I’ve found the sharp pangs of recent loss wane some, replaced by a more generalized sadness.
Care Dimensions posted a helpful list of suggestions on how to remember a departed loved one during the holidays. I have found playing their favorite music or watching their favorite films can be a positive way to connect with those who have passed. I also like to light a candle and set aside dedicated time to recognize departed loved ones in the memorial areas I have both inside my home and in my garden.
You can read more about how I dealt with grief in my award-winning personal essay collection, The Reluctant Caregiver. You can get a digital copy for just 99 cents if you purchase through the Smashwords 2023 End of Year Sale.
This holiday season, one of the best gifts you can give the caregivers in your life as well as those nearing the end of their lives is the space and attention to have difficult conversations.
This includes not only end-of-life conversations but challenging family situations that need to be addressed. Perhaps there’s a caregiver in your family or friend circles that could use more support. If we’ve learned anything over the last few years of tremendous loss of life from the pandemic, it’s that we may not have the time we think to work through difficult issues with our loved ones. Now is the time to be proactive.
I was reminded of this while watching the Peacock TV series, “The Gentle Art of Swedish Death Cleaning.” This isn’t normally the type of show I would watch but in episode 2, a woman with terminal cancer is featured. In fact, the woman was quite organized and she didn’t need that much help in downsizing. Beyond practical matters, she was dealing with challenges connecting with loved ones as she neared the end of her life. As one of the death cleaners proclaims, she needs “death cleaning of her soul,” which is an empowering concept that they help her fulfill.
Can you facilitate that process for yourself or someone dear in your life? What a meaningful holiday gift that would be.
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The Memories Project 