Category Archives: Awareness & Activism

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“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, […]

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

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July 11, 2020 · 7:13 pm
June 25, 2020 · 7:14 pm

Keep your elder loved ones safe this summer

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Summer is here, and while outdoor activities remain in flux due to the coronavirus pandemic, now is a good time to make sure you have your summer safety plan in place.

Every year, several hundred people die from extreme heat, according to the CDC, and the majority of victims are older. Increased heat sensitivity and risks associated with chronic health conditions and prescription medications make older adults more prone to heat-related issues.

Another issue is the lack of air conditioning. My parents’ condo did not have air conditioning, and while summers in their mountain community were generally mild, there were heat waves that would send temperatures soaring into the high 80s and low 90s. After they had passed, I spent a week or so there during one of those heat waves and even with a new fan that I bought, it was very uncomfortable. But what may be uncomfortable for someone younger can be dangerous or even deadly for those over 65 or in poor health.

Even more heartbreaking, some older people on a fixed budget fear the high utility bills associated with running an air conditioner, so even though they have one, they don’t use it.

Here are some things to consider as a caregiver when preparing your elder loved ones for the summer heat:

  • What are their cooling options at home? Are they adequate? Keep in mind that with coronavirus restrictions, cooling stations that some depend upon in their community may be closed. Have an alternative plan if it becomes too hot for your loved one to stay in their home.
  • Exercise is still important. Try to arrange walks or other outdoor activities in the early morning or evening hours, when it’s not quite as hot. Keep outdoor activities brief and make sure to bring water so your loved one stays hydrated. Focus on indoor activities like yoga or dancing to keep older adults active.
  • Provide shade: If possible, provide a shady spot for your loved one to spend time outdoors at home. Make sure elders wear breathable, light-colored clothing and wear a hat when outdoors.
  • Hydration is key: I found it was tough to get my parents to drink water. It is crucial that older people drink enough water, especially during the summer. Dehydration can occur more quickly than you think and have serious health consequences. Consider adding a lime or lemon slice to sparkling or still water to make it more interesting, or make a pitcher of unsweetened herbal iced tea to encourage extra fluid consumption.

 

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June 15, 2020 · 8:00 am

Alzheimer’s and Brain Awareness Month book sale

June is Alzheimer’s and Brain Awareness Month, a time to raise awareness of Alzheimer’s disease and to decrease the stigma and silence that too often accompanies an Alzheimer’s diagnosis.

To mark this important campaign, AlzAuthors hosts a book sale and giveaway each June. AlzAuthors is a global community of authors writing about Alzheimer’s and dementia from personal experience, whether as a caregiver or as a person living with these conditions.

I’m proud to be a part of this organization, and I’m excited my book, The Reluctant Caregiver, is a part of this sale. From June 15th through June 22nd you can get my book for half off and find great deals in a variety of genres, including fiction, memoir, non-fiction, and children’s and teen literature. Most are available in Kindle and e-book formats, and many are available in paperback and audio. AlzAuthors is proud to share its library of carefully vetted books to help guide you on your own dementia journey.

SHOP NOW: Alzheimer’s and Brain Awareness Month book sale and giveaway sponsored by AlzAuthors

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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 […]

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

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June 12, 2020 · 9:57 pm
June 6, 2020 · 11:15 am

Honoring caregivers during difficult times

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I’d like to take this moment to express my gratitude to all of the caregivers who have gone above and beyond the call of duty to care for their clients during the coronavirus pandemic. If there is anything positive to come out of this difficult period in our history, it is that the duties of care workers are absolutely essential and have been undervalued by society.

As Ai-Jen Poo writes in the article, Bringing Dignity Back to Essential Work, “I think we have a moment where we’re all taking a step back and seeing just how many people are powering our economy that we just never saw before, that we never valued appropriately, and who keep us safe but we haven’t kept them safe.” Think about the essential workers who have made our lives easier during lockdown, including caregivers, grocery store workers, and delivery drivers. These are roles many have taken for granted, but no more. “Once you see the value of what somebody brings to your life, your safety, your community, your economy, it’s hard to unsee that,” Poo writes. I couldn’t agree more.

Immigrants, women and people of color make up a large part of the caregiver workforce, including those who provided care to my parents. As we take stock during these challenging times, we have the opportunity to address past mistakes, such as underpaying care workers and not providing them with the benefits and the community support they need and deserve. This is not an idealistic, but realistic endeavor. As Poo points out, care workers allow the rest of us to go do our jobs, increasing productivity across the board.

I’m donating to Caring Across Generations to support their work in elevating the dignity and rights of caregivers. I encourage you to support your local caregivers in whatever way you can.

 

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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
May 2, 2020 · 5:51 pm

How to know it’s time to consider Memory Care? — The Diary of An Alzheimer’s Caregiver

With extra time spent at home in the midst of a pandemic, you may be in touch with your elder relatives more than ever. This is a great time to review the health status of your older relatives. When people are thrown off their routine, symptoms of dementia may become more apparent. This post from The Diary of an Alzheimer’s Caregiver offers excellent tips on when to consider memory care.

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! Brain disorders like Alzheimer’s, Dementia, etc. are progressive conditions. In these diseases, the patient’s health tends to deteriorate with time.…

via How to know it’s time to consider Memory Care? — The Diary of An Alzheimer’s Caregiver

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April 25, 2020 · 11:24 am

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
April 10, 2020 · 11:00 am

Review the 2020 Alzheimer’s Disease Facts and Figures

The Alzheimer’s Association released their annual report around the time the coronavirus pandemic was ramping up, but I did not want to overlook the latest findings. I thought it was especially appropriate to post this today, on what would have been my father’s 88th birthday.

Here are the main takeaways from the 2020 Alzheimer’s Disease Facts and Figures report:

  • Alzheimer’s is the sixth leading cause of death in the U.S. 1 in 3 seniors die with Alzheimer’s or another dementia. The death rate from Alzheimer’s has skyrocketed. Between 2000 and 2018, the number of deaths from Alzheimer’s disease has more than doubled, increasing 146%.
  • More than 5 million Americans live with Alzheimer’s disease. Women make up two-thirds of that number; African-Americans are about twice as likely to be diagnosed with Alzheimer’s or other dementias compared to whites in the same age group; Hispanics are about 1.5 times as likely to develop Alzheimer’s or other dementias compared to whites in the same age group.
  • Unless significant medical breakthroughs are made, by 2050, the number of Americans age 65 and older with Alzheimer’s dementia may grow to a projected 13.8 million.
  • 16 million unpaid dementia caregivers provide care valued at $244 billion annually. One in three caregivers are 65 and over, and two-thirds are women. One-quarter of dementia caregivers belong to the “sandwich generation,” caring for both an aging parent and minor children.
  • The cost of Alzheimer’s care to the nation is staggering. In 2020 alone, Alzheimer’s and other dementias will cost the nation $305 billion. What’s even more sobering is that half of primary care physicians believe the American healthcare system is not prepared for the growing number of those with Alzheimer’s and other dementias.

While these reports highlight the challenges we face in providing care for our loved ones with Alzheimer’s and other dementias, the Alzheimer’s Association proposes an action plan focused on education and recruitment to build up a corps of geriatric providers who understand the unique challenges that those with dementia and their caregivers face. The Alzheimer’s Association also encourages greater funding in the areas of rural healthcare and telemedicine.

2020 alz report

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