Tag Archives: caregiving

“Solo” Walks (aka I Walk Alone But It’s Fine You’re There) — When Dementia Knocks

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I connected with this post on many levels. I am an only child as the author is and I often think about how various diseases, especially dementia, would challenge my fierce independent streak. There is such a valuable lesson here for those who are encountering the early stages of dementia and dementia caregivers.

When I was in my 20’s, I spent a lot of time volunteering for hospice. One of my first hospice patients was a woman in her 60’s who had dementia. Her son lived with her, but he needed a weekly respite. I was told she was active and liked to go for walks. In fact, […]

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July 11, 2020 · 7:13 pm

Why Dementia Means Letting Go (and Why My 2020 Theme is “Let Go”) — When Dementia Knocks

This blog post written by Elaine M. Eshbaugh, PhD, has such a good message for all of us right now, especially caregivers. It is so true that you must learn to “let go” when dealing with dementia. Those of us who have been dementia caregivers have navigated our ways through “new normals” before. Stay safe and don’t be too hard on yourself.

So what’s your personal 2020 theme? (Can you answer this question without using a four-letter word that would’ve gotten you in trouble at recess?) You’ve got your personal and family challenges, which likely include dementia since you are reading my blog. You’ve got whatever chaos is happening in your community. Maybe people are arguing about […]

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June 12, 2020 · 9:57 pm

Are There Do’s and Don’ts When it Comes to Dementia? — We Are Dementia Strong

This is a great list from We Are Dementia Strong. Basically it boils down to treating your loved one with dementia like the person you’ve known, not solely by their dementia. This disease tries to strip people of their humanity and its caregivers’ duty to try and maintain dignity whenever possible.

Some other friends just may find it too hard to see me like I am. I didn’t like seeing my Grandfather or my Mother while they were on their Alzheimer’s Journey so, I understand.

via Are There Do’s and Don’ts When it Comes to Dementia? — We Are Dementia Strong

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May 30, 2020 · 5:31 pm

Finding healthy coping strategies as a caregiver

 

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Myriams-Fotos/Pixabay

A caregiver’s job was stressful enough before the coronavirus pandemic struck the world. But now, social isolation and anxiety, along with financial concerns, may feel overwhelming.

Over the last few years, I’ve spent time looking for ways caregivers can find a bit of respite, even if it’s just for an hour or an afternoon. What I learned from my work on Respite Care Share was that many caregivers aren’t seeking traditional respite care, which involves taking a longer physical break away from their loved one. While they would love a caregiving break, they worry about placing their loved one, especially those with dementia, in the care of a stranger while they’re away.

Based upon that feedback, I started focusing more on self-care, and finding realistic ways a caregiver can find some solace even in the midst of caregiving. It may be a cup of tea in the morning before everyone else is awake; it may be sitting in the garden while your loved one naps. Reading a chapter of a book after your loved one goes to bed. Listening to a favorite song while your loved one is occupied with an activity. It may not seem like much, but it can make a positive difference.

These are all things that can also be done during times of self-isolation. Supplements and herbal remedies may be helpful (but check with your doctor first.) On CBD for Caregivers, I published a post about relaxing beverages which are either non-alcoholic or lower in alcohol. The good news is that there are a variety such beverages available now, and many are quite tasty! One of my new favorites is Hella Cocktail Co.’s Bitters & Soda. It’s a nice beverage to sip while sitting outside in the area of the yard I’ve transformed into my respite corner.

Challenging times like these can find us slipping into bad habits like excessive drinking, smoking, overeating, etc. I hope you have or can find a healthier way to navigate these stressful times while keeping you and your family safe.

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Stay at Home with a Good Book – AlzAuthors Anthology Two is Now Available in Paperback — AlzAuthors: Alzheimer’s and Dementia Books, Blogs, Stories

Honored to have been able to share my caregiving experience that inspired The Reluctant Caregiver included in this collection.

Life these days is turned upside down for most of us, due to the COVID-19 pandemic. There is so much uncertainty, fear, and loss. Those of us caring for loved ones with Alzheimer’s and other dementias find ourselves stressed, not only from our usual pressures but the new ones the virus has delivered: stay-at-home orders…

via Stay at Home with a Good Book – AlzAuthors Anthology Two is Now Available in Paperback — AlzAuthors: Alzheimer’s and Dementia Books, Blogs, Stories

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April 17, 2020 · 4:49 pm

Farewell to Steve Dezember, who shared his ALS battle with the world

While coronavirus is claiming so many lives around the world, this week I am mourning a metro Atlanta man, Steve Dezember, who died this week after a 9-year battle with ALS.

I don’t use the term “battle” lightly and am aware of the negative connotation such terminology can engender. But in this case, I believe the term applies. Steve showed courage, grace and humor as he fought back time and time again against all odds. I have followed Steve’s story for years after watching the moving documentary, Hope for Steve.

I’ve also followed the social posts from his wonderful, equally courageous and compassionate wife Hope has shared about the challenging ALS caregiving journey that are so enlightening. I love how she embraced the importance of self-care and wasn’t shy about sharing the difficulties along with the triumphs of being a long-term caregiver. The couple also shared the financial challenges that a disease like ALS creates. Steve made paintings from his wheelchair and Hope also created a variety of art that they used as fundraisers to support his care. A painting of his hangs on the wall of my bedroom.

steve painting

Following Steve’s journey over the years has made me more appreciative of having good health and in enjoying the simple pleasures of life. It made me admire the sacrifices that spousal caregivers make to tend to their loved ones. And even though this world can seem like a miserable world to be sometimes, watching Steve fight for another day offered an important perspective.

If you have the means, consider donating to an ALS charity in the name of Steve Dezember. Learn more about his journey and share his story. Keep his lovely wife Hope in your thoughts and prayers.

I hope you and your loved ones are staying safe during this challenging time.

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How technology can be an ally to caregivers

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Google’s Super Bowl commercial, “Loretta,” touched a nerve. I was very moved by the love story the commercial told, inspired by the grandfather of a Google employee. The ad shows how technology (in this case, Google Assistant) can be put to good use, allowing a man to fondly remember his late wife through images and sound. Many people felt the same way I did about the commercial, but a vocal minority expressed their reservations.

While I can understand people’s concerns about privacy rights and the automation of our lives, we can’t let our fears trump the benefits that technology can offer. For example, in this commercial from Google, a simple tool offered many benefits, especially to older generations and their caregivers.

  • Digital photo album: While those of us of a certain age may treasure our physical photos, we have to understand that for younger generations, digital photographs are the norm. I love looking at old photos in physical form, but I also love having access to those same images online. It also makes sharing from afar so simple. In this day and age, when family members often don’t live near one another, this can be a major benefit.
  • Using reminders to prompt memories: While critics found this feature creepy, those of us who have dealt with dementia in our families know how precious memories can be. I know of a family caregiver who writes out cards with explanations to the daily questions she receives from her mother who has dementia. The cards are a great source of comfort to her mother (and sanity-saving for the family!) A smart assistant could recite the recorded answers.
  • Combatting loneliness: This point is controversial, as I read one commenter who interpreted the Google commercial to mean that we have permission to leave old lonely people on their own with a smart device as a substitute to visiting them. I don’t interpret the ad like that at all. But loneliness among the elder population, especially in rural areas, is a real concern. Anything we can do to alleviate that isolation can be beneficial both mentally and physically. My mother had a talking parrot toy she talked to when Dad moved to the memory care center. The need is there for such interactive devices.

I strongly feel it is in our best interest to embrace technology while holding companies accountable when they violate privacy rights and engage in other nefarious activities. Bottom line, technology is not going away. I prefer to educate myself and others on the benefits and be a responsible user versus burying my head in the doomsday bunker.

 

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Challenges of dying at home, revisited

This week, NPR aired Patients Want To Die At Home, But Home Hospice Care Can Be Tough On Families, the national version of a story that first appeared last year on Nashville’s NPR affiliate. I was interviewed for this series, and shared my personal challenges in tending to my dying mother at home.

This is such an important conversation for the nation to have and it is a cause near and dear to my heart. As I state in the story, I am not anti-hospice by any means. My father died in a facility and that was a horrible death. But caring for my mother who died at home had its own unique challenges. Both experiences scarred me for life, leaving me with regrets and with a mission to help other families avoid the mistakes my family made.

I encourage everyone to read and/or listen to this series and think about your own situation. Family caregivers need to be clear-eyed about the demands they may face in caring for a loved on at home at the end of life. It can be the most tender of bonding moments, a final act of love and sacrifice for a beloved family member. Knowing the pitfalls and identifying potential gaps in care ahead of time can help you from becoming overwhelmed and burned out.

Finally, for those who did not have a good experience with home hospice care, know that you are not alone and it’s not your fault. Forgive yourself for anything you may be blaming yourself for (I’m still working on this part.) Your loved one would want you to let go and move on, free of guilt.

 

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Bathroom Safety Tips For Seniors — The Diary of An Alzheimer’s Caregiver


Good tips! It’s so easy to overlook all of the alterations needed to keep an elder loved one, especially one with dementia, safe in the bathroom. My mother did not have dementia, but she fell and broke her shoulder while using the toilet in the middle of the night. She never fully recovered from that injury, and her mobility was limited because of it. Falls in the bathroom are all too common, so beware the risks and take action to keep your loved one safe.

Sign up to get these posts and a whole lot more delivered right to your inbox! The Diary of An Alzheimer’s Caregiver – Appreciate the good, laugh at the crazy, and deal with the rest! A primary concern of senior citizens is whether they can continue to live independently as they get older. Their loved…

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January 16, 2020 · 4:36 pm

Caregiver shortage expected to grow, must address issue now

 

Hope everyone had a good holiday and that your new year is off to a good start.

The fact that there is a caregiver shortage is not new; however  a Quartz article posted this week has put the issue back on the national radar. The article cites the slowing population growth, along with increased longevity and a decrease in immigration among the issues that will potentially trigger a caregiving crisis. By 2030, that shortage may grow to more than 100,000 caregivers for the elderly, according to Quartz.

Here are some ways we could address this major healthcare issue:

  • Pay caregivers a livable wage: In order to recruit new generations into a caregiving career, we’re going to have to revamp the woefully inadequate pay scale. Professional caregivers deserve to have decent pay, benefits, and access to training and educational opportunities to grow in their fields. Caregiving should no longer be a job of last resort; it should be a career choice one takes pride in.
  • Immigration policies: We need a fair immigration policy that offers those interested in becoming U.S. citizens an opportunity for a stable career in a field with severe shortages. Too often, immigrants who become caregivers, especially those with questionable legal status, are taken advantage of and paid below minimum wage without benefits.
  • Offer incentives: Just like with geriatric or rural medicine, caregiving is not a “sexy” career choice. Certainly it can be rewarding, but in order to fill the large care gap we may need to get innovative. I’m a fan of the Care Corps concept, and a student loan forgiveness program in exchange for serving as a caregiver could attract candidates.
  • Offer better support for family caregivers: Realistically, the bulk of caregiving duties will likely continue to fall on family members. We need to support them better, by employers offering flexible work schedules and the government embracing universal family care. A tax credit would help some with the financial hit family caregivers suffer.

There is no easy fix, but we definitely need to keep pushing this topic into the general conversation and advocate for common-sense actions and programs to alleviate the caregiving shortage and burden on family members.

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