Tag Archives: death

Spring cleaning a good time to talk about family heirlooms

While you are spring cleaning this year, it’s a great opportunity to consider the fate of family heirlooms. Too many people never have discussions about what they want to happen to their possessions when they die. This puts a huge burden on relatives who become responsible for determining the fate of a loved one’s personal items.

Swedish death cleaning has become a trend, but being thoughtful and methodical about going through possessions can be done at any age and stage of life. Some people like a system which offers direction about how to begin, such as tackling clothes first because they can be easier to sort through and may hold less sentimental meaning. Using a color coded system, such as red for discard, green for keep, and yellow for unsure, is a simple way of sorting, allowing even children to participate in the process.

I used a similar method to a certain extent to sort through my parents’ belongings before I put their condo up for sale. While it’s not always possible, I would recommend not attempting to sort through a recently deceased loved one’s possessions because the complex emotions of grief may cloud your judgment. If a home must be cleaned out in a timely manner, consider placing the items in a storage unit until you are ready to tackle. On the other hand, I wish I had gone through more of my parents’ belongings before the final “purge” as I had limited time for the final sorting process and only could keep a limited amount of items. My main regret is not being able to find a home for a few items.

What I kept were humble items that represented our family, like a homemade coat of arms from my father’s family in Northern Ireland, and an ice cream dish from my mother’s side of the family, which held happy memories from my mother’s childhood on the farm making homemade ice cream. I kept a few sentimental items that made me feel loved, like the knitted elephant art my mother made that decorated my room as a child, or the stuffed bunny my grandmother made from rags. I made special effort to ship my mother’s guitar to my home, and I’m glad I did. My father was not the sentimental type when it came to mementoes, but he did keep every letter to the editor that he got published, so I kept those and placed them in a scrapbook because I know they were important to him.

Having recently gone through the cleaning out process, and beginning a similar process with my own belongings, a common theme I’ve found is that too often, special items are tucked away to preserve them but they also don’t get to see the light of day. If possible, showcase those special belongings, so you can appreciate them throughout your life.

If you want to learn more about the Swedish death cleaning method, there’s a book and TV show. I’ve written before on this blog about the show, which I found moving and inspiring.

Image by DALL-E via Chatgpt.

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Deaths of Gene Hackman and wife sad reminder of the risk of a spouse-caregiver dying first

Image of Santa Fe via Pixabay.

The unusual circumstances surrounding the deaths of actor Gene Hackman and his wife serve as a stark reminder of what can happen when a spouse who also is the primary caregiver of a spouse with Alzheimer’s dies before their loved one.

Hackman and his wife, Betsy Arakawa, who at 65 was 30 years his junior, were found deceased in their secluded Santa Fe, New Mexico home on Feb. 26. A pest control worker alerted security for the gated community in which the couple lived after showing up to provide service but not receiving a response, KRQE reported. Upon investigating, the security officer found the bodies and contacted authorities.

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An autopsy revealed that Arakawa died of hantavirus pulmonary syndrome around Feb. 11, KRQE reported. Since my parents retired to New Mexico, I was aware of hantavirus, which is rare, with most cases appearing in the southwestern part of the U.S.

Hackman, 95, died of heart disease with complications of what the medical examiner noted as an “advanced state of Alzheimer’s disease.” He’s believed to have died on Feb. 18, when the last activity on his pacemaker was recorded. That means authorities believe Hackman could have spent up to a week alive after his wife died. We will likely never know the details of those days, and whether Hackman realized his wife was deceased or whether Hackman’s cognitive decline may have prevented him from understanding the dire situation.

In addition to the couple, one of their dogs died, while two were found alive. The deceased dog was found in a crate near Arakawa’s body. Veterinary records show that the dog had undergone a recent medical procedure, which likely was the reason it was confined to the crate, authorities said.

Such a tragic ending is a sobering reminder for those who serve as the sole caregiver for a spouse or other relative with a condition like Alzheimer’s in which the care recipient may not be able to call for help or care for themselves in the case of a medical emergency involving the caregiver. By all accounts from friends of the couple, Arakawa closely managed Hackman’s health. As his Alzheimer’s progressed, he likely became even more dependent upon her guidance.

Some have questioned why Hackman didn’t have a professional caregiver, or even a live-in care provider, as he likely could have afforded such a service. It seems Hackman and his wife enjoyed their privacy, and with Arakawa considerably younger than Hackman, and very capable of managing his care, outside help may have felt intrusive and unnecessary. As those of us who have cared for loved ones know, bringing in external help can be upsetting and disruptive to those with Alzheimer’s, as they thrive on routine and familiarity.

What can caregivers do if they find themselves in a similar situation? Having a plan in place to account for a caregiver’s acute health crisis is vital. Share a document with family that includes key health information, current prescriptions, etc. Technology can help; there are numerous medical alert systems available which can call for help with a click of a button or can sense when someone has fallen and automatically send help. My mother found such medical alert services useful as she lived alone. Having a trusted friend or relative who can serve as a check-in buddy can be helpful. Over the last year or so of my mother’s life, we spoke almost daily, which allowed me to assess her wellbeing in addition to offering social connection.

If you have a loved one that you haven’t heard from in awhile, don’t hesitate to check on them.

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Marking the anniversary of my father’s death

Posing with the bears outside of the Ruidoso Public Library, 2004.

My father died 13 years ago today. Having spent time recently going through the final batch of my father’s possessions, I feel his spirit even closer this year.

I didn’t have down time while I was cleaning out my parents’ condo, so I got up extra early on the day I was leaving to visit the library. I took a photo with one of the bear statues. It was too early for the library to be open but I was glad I squeezed in the time to take in the sights and sounds of nature along the picturesque walking trail to the library, as my father did so many times.

Posing with the bears again, Nov. 2024.

It was my father’s favorite spot. He spent countless hours there, and even as his dementia progressed and his reading skills diminished, he still made his way to the library out of habit.

I don’t visit libraries myself anymore, having adopted the convenience of e-books, but as I mentioned in my last blog post, libraries will always hold a special place in my heart.

Even though it’s been well over a decade since my father’s passing, marking the somber anniversary still does have an impact on my holiday spirit. For those who have experienced loss during the holiday season, allow yourself the space and self-compassion to adjust expectations.

Reflection and remembrance can take many forms, and your preferences may change over time. Be authentic and don’t try to force emotions.

I know this can be easier said than done when it comes to demands from others, who may not appreciate the complexities and individuality of the grieving process. My wish for you this holiday season is that others will be supportive and understanding.

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A mountain of memories and mementos

This past week, I cleaned out my parents’ condo to prepare it for sale. It was a bittersweet experience. My parents enjoyed several happy, peaceful years there in retirement, but as their health declined, my memories of the place become more painful and complicated. That’s a reason why Thanksgiving and Christmas are tough holidays for me.

Even though I had spent time cleaning out upon each visit since my parents died, I was overwhelmed by the amount of stuff that remained. My parents weren’t hoarders; it was just an accumulation of two lifetimes, along with some of my stuff. I’m trying to downsize my own material possessions, so I had to be very disciplined on what I would bring with me. I consolidated down to two small boxes and a duffel bag. The rest would be donated.

It seemed like a lot of stuff to me as I sorted through it, but the donated items fit in one room.

It’s interesting what one chooses to keep and what one lets go in these situations. For example, I kept Polly the parrot, which brought much needed joy to my parents after my father developed dementia. I donated the beautiful kimono that my mother had received from a Navy mate. I kept my grandmother’s ice cream dishes (only 1 survived in shipping, alas) but let go my mother’s Navy footlocker. I would have loved to have kept it, but shipping it would have been too costly. I kept my mother’s makeup bag, but let go of my mother’s purse.

Heavy things like yearbooks I chose to scan selected pages instead of keep. Many yearbooks are available online now, if I should ever wish to wander down nostalgia lane. I spent a lot of time doing just that on this trip, so I think I will be good for awhile.

It was an overwhelming and exhausting experience. A myriad of emotions arose from some of these objects I hadn’t seen since my childhood. Choosing what to keep and what to let go was a challenge. Here are some tips to keep in mind if you find yourself faced with this daunting task.

  • It may be easier to start with the true junk, the items that no longer have any useful life. Consider this a warm-up task.
  • To stay organized and focused, create a plan. Maybe go room by room, or divide by type of items such as clothing, kitchenware, photos, etc.
  • Take breaks if possible. I was on a time limit but even stepping outside to get a breath of fresh air can help one reset.
  • Keep one, let the other go: When I had to sort multiples of items, I tried only to keep one. This can make it easier to make progress while maintaining items that have true meaning to you.
  • Remember, whatever you take with you, there will come a day when those items will have to be dealt with again. If you have children, be aware of the burden it can place on them to have to inherit so many items that may have limited meaning to them. Focus on the memories and heirlooms that help tell your family’s story.
  • Don’t feel like you are throwing your family’s mementos away. Many donated items can have a second life in someone else’s home or be repurposed and upcycled.
  • Finally, and this may be the most important takeaway from my experience: Don’t hide treasures away for special occasions! There were many items in my parents’ condo that had been sitting in boxes that were never used, like dishes. Don’t leave these items to collect dust in a closet. Go ahead and use the good china, wear the fancy clothing item, or display the creative project you are proud to have made. Your family treasures are meant to be enjoyed in the present.

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Digital estate planning and dementia

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.

As an Amazon Associate I earn from qualifying purchases.

Illustration created by Perplexity AI.

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Reflections on turning 50

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.

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Caregiver SOS podcast: Preparing for the Financial Impact of Caregiving

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.

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Marking 9 years since my mother’s death

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.

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Happy Mother’s Day

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.

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Alzheimer’s Society facing criticism over ‘The Long Goodbye’

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.

Gail Gregory posted a moving response to the film, demonstrating how she has made adjustments in her life to live well with dementia.

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.

Dealing with a new dementia diagnosis? Check out my dementia caregiver product recommendations. As an Amazon Associate I earn from qualifying purchases.

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