Tag Archives: caregivers

Dementia wandering can be life-threatening in winter

Parts of the US are already experiencing winter weather. It’s important to ensure that loved ones with dementia don’t wander when the weather turns frigid. Each winter, there are cases of those with dementia who fall victim to the elements after wandering from home or a care facility.

My father was a wanderer. His lifelong love of walking had kept him lean, but his desire to move became a liability as his dementia progressed. Dementia takes a physical toll as well, so as Dad became frailer, he was more prone to injuries from falls. While he still lived at home, my mother had to watch him like a hawk. One time, she attempted to take a brief bath, and Dad slipped away. Mom immediately called me, frantic. It was going to be dark soon, and turning colder. In my father’s case, there was a happy ending. Mom called the police who were responsive and tracked my father down not too far from my parents’ condo community. Crisis averted that time.

My father would wander a few more times while he still lived at home, including one infamous time when my mother was in the dentist’s chair. Once he moved to the memory care unit, he was behind a locked door secured by a code. He still wandered, up and down the halls, and outside in the garden area when weather permitted, but at least he was contained to the facility.

It’s such a helpless feeling when a loved one is lost. I’m grateful for first responders and others who helped locate my father when he wandered off.

There are things caregivers can do proactively to reduce the risk of wandering this winter.

  • Door locks: One of the easiest solutions is to configure your home’s door locks to one in which you lock with a key from the inside. Then keep the key on a chain around your neck or in another inaccessible place from your loved one with dementia. If you prefer a more high-tech solution, you could choose something like a fingerprint lock or one that requires a code. Consider a door chime or bell to signal when one exits the home.
  • Trackers: I bought one of the earliest renditions of GPS-powered tracking tags for my father, but the device was cumbersome to use at the time and didn’t have good reception in the mountain town where my parents lived. I’m happy to say that such devices have come a long way since then. If high-tech solutions aren’t an option, even a simple ID bracelet or necklace can be helpful. For long-distance caregivers, seek devices that allow you to monitor your loved one’s movements from your phone, which can offer some peace of mind.
  • Behavior modification: Track your loved one’s wandering episodes. Do they happen at a certain time of day? Sundowning is a common issue for those with dementia, and the longer period of darkness during the winter can exacerbate the issue. My father struggled with bedtime and sometimes would get up in the middle night, change into day clothes, and sit in his chair in the living room until morning. Consider changing up your schedule and finding enjoyable activities to do together during this time period. Talk to the doctor about medication or other therapies.

If your loved one does wander away, try not to panic. Conduct a quick search of the immediate area, and if there’s no sign of the individual, contact authorities. 911 should be able to direct you to any specific community programs for these situations, if they exist in your area, or like in my father’s case, patrol officers handled the situation. Keep a folder on your phone with a recent photo of your loved one, nearby places they may be prone to going to, a list of medical issues and medications, and the contact information for area hospitals.

Caregiver.com has additional useful tips for caregivers to keep their loved ones with dementia safe and warm this winter.

Image by Microsoft Copilot.

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Celebrating National Family Caregivers Month

November is National Family Caregivers Month. While caregivers can use support all year long, this is a great time to step up efforts and let the caregivers in your life know that you appreciate them.

If you are looking for inspiration, don’t miss the airing of Wine, Women, & Dementia on PBS. Check with your local PBS station for more details. You can read my review of how this caregiver community grew online and in-person to foster authentic connections and provide critical emotional support.

Sometimes, caregivers who feel isolated in their specific caregivers situations have to create their own community. Dawn Shedrick did just that, and her caregiving journey is captured in this NPR article.

Real Simple has a good list of ways people can support the family caregivers in their lives. One of the tips is keep showing up. Just like caregivers keep showing up for their loved ones, we can do the same to support caregivers.

Image by Microsoft Copilot.

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Caregivers in the election spotlight again

When younger, I was a sporadic voter and I still maintain skepticism when it comes to viable government solutions to the major issues impacting our country. As this article from The 19th points out, I’m not the only caregiver who has felt abandoned by lawmakers.

Recently, both the Democrat and Republican presidential candidates offered their plans on how to better support caregivers. As we know from past elections, candidates offer many plans that sound good, but once in office, those plans are often derailed by Congress and/or the courts. Funding for programs supporting caregivers, from childcare to eldercare, always faces an uphill battle.

If the toxic political atmosphere has you feeling down, one empowering action you can take is by helping older folks and disabled people exercise their right to vote.

I’ll also be voting in honor of my former colleague, who died last month. She so wanted to live until the election, and spent the last month of her life working on a plan to be able to vote. It’s an important reminder to not take the right to vote for granted.

Image by Microsoft Copilot.

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Devastating flooding in my mother’s hometown of Newport, TN

I was sad to see the destruction that Hurricane Helene caused in Newport, Tennessee. While all eyes were on Florida where the Category 4 storm made landfall, areas far away such as Asheville, North Carolina and Newport also suffered significant damage.

Newport was my mother’s hometown, and always held a special place in her heart. The east Tennessee community in the shadow of the Great Smoky Mountains played a major role in all of my mother’s fondest childhood memories, from tending to the animals on the farm to family picnics in the Smoky Mountains.

Flooding has made some roads inaccessible and has led to hazardous driving conditions. Commercial buildings and homes have suffered water damage. There have been numerous water rescues, including one from the rooftop of a hospital in a nearby county.

This isn’t the first natural disaster to impact an area connected to my parents. In June, wildfires ravaged Ruidoso, New Mexico, where my parents retired.

A week ago, residents of Newport, Asheville, and other areas far removed from the Florida coast weren likely not thinking about storm preparations. Yet, here we are. That’s why it’s important as a family caregiver to have a storm preparation plan in place. Evacuation decisions can be difficult to make for medically fragile loved ones, but it can also be difficult to remain and potentially be cut off from necessary medical services. Doing research and planning ahead of the next storm can make all the difference.

Digital illustration by Microsoft Copilot.

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Treasure the ‘grace-filled moments’

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Remembering a former colleague, community activist

Earlier this month, a former colleague of mine, Marcia Killingsworth, died from lung disease. Our paths crossed professionally when we worked for the same newspaper and then we became longtime Facebook friends, where we shared a loving devotion to our cats.

I knew that Marcia had been actively involved in her community of Edison, Georgia, where she moved back to after retiring. An article written after her death highlighted just what a difference her contributions made to the town. Marcia was dogged in her dedication to holding the town’s leaders financially accountable, faithfully attending monthly city council meetings, taking notes and asking critical questions. She followed up on issues until she received answers, and documented everything on social media. This is not glamourous work, but it is necessary. Her actions inspired others to join her. One of those residents said of Marcia: “She was the one who brought Edison to light.”

I love that and hope it will offer inspiration for those of us working to raise awareness of Alzheimer’s and other dementias. Sometimes our work can seem futile and discouraging, but individually and collectively, we are making a difference. Our actions may not make headlines or go viral, but they will be remembered by others.

Illustration by Microsoft Copilot.

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A heartfelt reminder for all caregivers

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.

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Highs and lows and embracing resilience

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.

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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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