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.
Recently I had the chance to see the documentary, “Wine, Women, and Dementia.” The film was made by Kitty Norton, who quit her job to care of her mother who had dementia. Norton documented the roller coaster ride of family caregiving with her sister, creating a popular blog, Stumped Town Dementia, and sharing videos of the sometimes hilarious, sometimes tragic moments involved in being a dementia caregiver.
Through her blog, Norton built an online community which offered each other support and advice as they experienced their own caregiving journeys. In the documentary, Norton travels across the country to visit these caregivers and learn more about them. The result is a brutally honest, moving and in certain moments, hilarious documentary.
The candid tone of the documentary aligns with my own experience and approach to caregiving, as I captured in my book, The Reluctant Caregiver and as I share here on The Memories Project. If you’ve seen the film and would like to check out my book, you can grab a free copy through December 15, 2023 via this Prolific Works giveaway.
By not shying away from the difficult moments, we better prepare caregivers for the future. I also appreciate the value of online communities that the film highlights. While the internet can seem overloaded with toxic behavior, if you look in the right places, you can find good people like those included in this film who have build a supportive caregiver community.
For those facing difficult family situations, the holiday season is often met with dread. As we get older, losses can mount and make the holidays a reminder of those who are no longer with us. I grapple with this each holiday season, as my father died five days before Christmas 2011. Every holiday season since then has been tinged with grief.
It can feel impossible to feel gratitude as a family caregiver who may feel hopeless and trapped in their situations. I often felt resentment when I came across those pushing messages of gratitude during the holiday season. Now that I’ve had the space of several years since caring for my parents, I feel that a gratitude practice can be a useful self-care tool but only if one is genuine and not trying to force the issue.
Gratitude doesn’t have to be a list overflowing with positivity. It can be a testament to what makes your life worth living.
I hope your holidays will come with good family moments. Those happy memories can provide immense comfort during tougher times.
If you are looking for more reading material this holiday season, I’m participating in a giveaway via Prolific Works. You can get a copy of my award-winning personal essay collection, The Reluctant Caregiver, for free through December 15, 2023.
Carter was well-known for her caregiver advocacy work. One of her most famous quotes sums up the universal importance of caregiving:
“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.”
Rosalynn Carter, Former First Lady of the United States
Carter, much like her husband, former President Jimmy Carter, didn’t just deliver speeches or donate money to caregiving causes. The Rosalynn Carter Institute for Caregivers was established in 1987. The Institute conducts important research on the impacts of caregiving and has launched programs like Working While Caring, which partners with employers to address the needs of their caregiver employees. The Institute also has programs dedicated to dementia and military caregivers.
The Carters were married for 77 years, a union that was a true and loving partnership.
Former first lady Rosalynn Carter has died at the age of 96, the Carter Center announced on Sunday.
"Rosalynn was my equal partner in everything I ever accomplished," Jimmy Carter said in a statement.
For more on Carter’s long life dedicated to giving back to others, visit her tribute page.
The best way to honor her memory is to continue her mission, to create a society in which caregivers are supported and have the resources they need to thrive.
While anger and frustration are normal emotions to feel as a caregiver, society doesn’t tend to support caregivers expressing negative emotions. Instead, caregivers are judged for being selfish and not loving the ones they care for enough. This is especially true for female caregivers, who are expected to sacrifice career and other pursuits to embrace a role that they have historically been expected to fulfill.
Jennifer Levin, who runs a Facebook support group for millennial caregivers, summed up the conflicting emotions of caregivers: “A lot of caregivers are afraid to express their anger, because they feel guilty.”
I definitely experienced that uncomfortable mix of emotions when caring for my parents. Exhaustion of juggling a full-time job with caregiving duties, resentment, guilt for feeling resentful, frustration at the lack of support … and then I was expected to show gratitude and spin the experience into a positive?
I am grateful for Brenoff and others like myself who are speaking out for those still in the caregiving trenches, who feel powerless and in despair of what seems like a hopeless situation. The best way we can support caregivers is by making sure they have the resources they need so that caregiving becomes a manageable situation, not one in which the person feels like they are drowning each and every day.
November is both National Family Caregivers Month and National Alzheimer’s Month. The National Family Caregivers Month theme for 2023 per Caregiver Action Network is is #CaregiversConnect. Visit the CAN website for resources on how you can connect with other caregivers and caregiver support services.
In honor of National Alzheimer’s Month, I’d like to share a giveaway from AlzAuthors. During the month of November, while supplies last, you can receive a free audiobook, “Alzheimer’s and Dementia Caregiving Stories: 58 authors share their inspiring personal experiences” to those in the US and UK and a free copy of the e-book version, which is available to readers around the world. Visit the AlzAuthors website for more details.
I’d like to share this message from AlzAuthors in support of all caregivers. I know I struggled as a family caregiver by constantly being in doing mode. Respite can be difficult to secure and self-care is often relegated to a low priority, but even moments of pause can make a difference.
As we prepare to enter another holiday season, it’s important to note if you are exhibiting signs of depression and fatigue. This social post from the Academy of Grief calls it “depression tiredness.”
I experienced much of this list while caring for my parents. I thought the “pretending to be okay” entry and being tired from faking a smile all day was particularly notable for caregivers. Instinctively people may project an outward image of strength, but inside, we may be feeling something quite different.
It’s also important to note the small things one can do when they experience these emotions. Of course, seeking professional care is vital, but “small glimmers” can help one get through a difficult day. I’ve actually used all of these at one time another to ground myself or lift my spirits.
I just got back from my first trip overseas since before the pandemic. Here are some observations I made that may be helpful for caregivers.
Verify that you and your loved ones have the required travel documents well before your international trip. Check the expiration date of your passport. If it is going to expire within 3-6 months of your trip dates, check to see if you’ll need to renew before your trip. Beginning in spring 2025, an additional authorization document will be required for US citizens traveling to Europe.
Mode of travel: If you are traveling overseas, you’ll probably be flying or taking a cruise. Trains are an option when traveling across Europe. There are pros and cons to each. It really depends upon the needs of those you care for and which mode of travel would be the most accommodating.
Medications and medical supplies: Make sure to clearly label medications to prevent issues during the security screening and if you have electronic medical supplies that require power, make sure to bring a country-specific outlet adaptor.
Accommodations: Make sure the accommodations you choose during your trip, whether a traditional hotel or an Airbnb, will be accessible for you and your loved ones.
Special diets: You can request special diet meals on flights. This can typically be done online, but check with your airline for more details. Bringing some favorite snacks can help put anxious loved ones more at ease. For those with a history of severe allergic reactions, bring an Epipen.
Public vs private transportation: Once you’ve arrived at your destination, if you plan on traveling in the region you’ll need to decide if public transportation is feasible or if would be more comfortable to hire a private care, if your budget allows. I dealt with significant rail issues during my recent trip which I was somewhat prepared for but do research how reliable public transit is in the area you will be visiting. Are you and your loved ones physically mobile? Keep in mind that walking is much more utilized as a form of personal transportation than in much of the US.
Be prepared for the unexpected: Travel delays, reservation issues, illness, etc. Try to include some flexibility in your travel schedule to allow for common travel issues.
If you or your loved one have a medical issue that you may need to seek care for while traveling, research care options near your destination. If you are visiting a country in which you can’t speak the language, do learn the phrases that could be of use to you in those situations.
Seeking more travel tips? Check out this guide from AARP and this Caregiver.com article that offers dementia caregivers specific trips on traveling safely with your loved ones.
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The Memories Project 