Tag Archives: caregiving

November 18, 2024 · 8:00 am

Making guests with dementia feel comfortable at Thanksgiving dinner

Thanksgiving was one of my family’s favorite holidays. My father loved the food and my mother enjoyed preparing our small family’s meal. If you are hosting or attending a Thanksgiving dinner with a loved one with dementia, it’s important to consider such an occasion from the perspective of someone with cognitive challenges. By planning ahead, remaining flexible, and adjusting your expectations, you increase the chances of everyone having a good time.

Here are important aspects to consider:

Group setting: How many people will be attending the gathering? Is your loved one with dementia comfortable with large groups or do they become easily overwhelmed? What about children or pets? Some people with dementia light up and become more engaged in the presence of children and pets, others may find their energy overwhelming or irritating.

Sitting at a large table can make it difficult for those with dementia to keep up with multiple conversation streams. One solution could be to have multiple smaller table settings to encourage engagement and reduce distractions.

Dietary needs: Dementia can impact a person’s palate, so don’t be surprised or insulted if old favorites are not greeted with much enthusiasm. If dietary restrictions are a consideration, making a plate instead of self-serve may be the best option. Monitor alcohol intake, especially if your loved one takes medications that may interact with alcohol.

Those in the middle to latter stages of Alzheimer’s and other dementias may begin having problems managing cutlery. Consider cutting up food into bite-sized pieces for ease in eating.

One of the more sensitive and heartbreaking aspects of dementia is when someone who loved to cook loses the ability to safely navigate the kitchen and follow recipes. For those who still want to contribute to the Thanksgiving feast, find kitchen tasks that match their ability level. Remember that it’s about the family spending quality time together even more than the food.

Meal presentation: One thing in common with Thanksgiving dinner spreads is that the table is often loaded with multiple dishes. It can be difficult to know where to start even for someone without dementia! Consider using adaptive dinnerware designed for those with dementia.

If your family is hosting and your loved one is no longer able to cook safely, keep them involved by helping set the table.

Need for quiet time: Be prepared to give your loved one a space where they can decompress if necessary. If you are at someone else’s home, perhaps a guest bedroom or if the weather cooperates, a breath of fresh air on the porch could be ideal. Sometimes, a drive around the block may help re-set one’s mood, and worse case scenario, leaving a gathering early is always an option.

Remain flexible and accept that certain beloved family traditions may need to be revamped. After such a social event, make sure your loved one has plenty of time to rest and recover.

By taking these aspects of holiday meal planning into consideration, loved ones with dementia will continue to feel involved and appreciated. Even those who have diminished verbal skills can soak up the love in the room.

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November 11, 2024 · 8:00 am

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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November 4, 2024 · 8:00 am

Aging at home comes at an increasing cost

As with many other household expenses, the price of in-home care services has skyrocketed over the last few years. With so many people desiring to age in place at home, families are quickly learning the financial challenges of honoring the elder loved one’s wishes.

The Wall Street Journal reported on the increasing cost of home care, in which the national median cost of a home health care aide is $33 per hour. In 2015, the year that my mother died, the cost was $20 per hour. One woman in Nebraska that was interviewed for the article said she spends a staggering $240,000 per year for home care to tend to her husband, who has Alzheimer’s.

While the hourly rate paid to agencies who employ home health care aides has skyrocketed, the pay the aides actually receive remains low. Median pay for home health care aides is $16.12 per hour, according to figures cited in The Wall Street Journal report. The low pay means high turnover and a challenge in recruiting enough aides to meet growing demand.

The article also discusses the potential high cost of retrofitting an existing home to accommodate the medical needs of a loved one. For example, adding an accessible bathroom on the first floor of a multi-story home for a loved one who can no longer navigate stairs. It would be wise to assess the home your elder loved one resides in and think about the changes that may be necessary as they age, before a healthcare crisis occurs.

Of course, residential facility care comes with a hefty price tag as well. According to a 2023 Genworth study, the monthly median cost for a nursing home facility in the US is $8669 for a semi-private room and $9733 for a private room.

What can families do to address the growing costs of elder care? Long term care insurance may help cover some costs, but read the policy carefully to ensure it covers in-home care service. Those who own homes may explore taking a home equity line of credit or a reverse mortgage. Family members may delay retirement in order to preserve access to good health insurance benefits. As The Wall Street Journal article states, families should not count on an inheritance because that money may be needed to pay for long term care.

Family members who can’t afford to pay for long term care may have to sacrifice their careers in order to do it themselves. I experienced a disruption in my career when I had to quit my job to take care of my mother for half a year as she recovered from major surgery. I don’t regret the decision but I’m still feeling the impact in my retirement funding, which is well behind where I should be at 50 years old.

Does all of this sound depressing? Honestly, I’m glad The Wall Street Journal wrote such a sober, honest article on the topic. The astronomical cost of care in the US needs to be recognized by the general population so that we can increase advocacy efforts to address this untenable situation.

Image by Microsoft Copilot.

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October 14, 2024 · 8:00 am

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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September 30, 2024 · 8:00 am

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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September 23, 2024 · 8:00 am

Treasure the ‘grace-filled moments’

The Alzheimer’s Caregiver

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August 11, 2024 · 11:37 am

A heartfelt reminder for all caregivers

You’re A Good Person, Caregiver

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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July 27, 2024 · 1:08 pm

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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July 18, 2024 · 8:00 am

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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July 9, 2024 · 9:00 am

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

Preparing for the Financial Impact of Caregiving with Joy Johnston

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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