Remembering a friend and fighter for Alzheimer’s caregivers

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I was shocked and saddened to learn that Pamela Jo Van Ahn, executive director of Amy’s Place, died on June 15th.

If you’ve followed my blog for awhile, you’ve heard me talk about how much I loved Amy’s Place, serving those with Alzheimer’s and other dementias and their caregivers. It was such a welcoming, non-judgmental environment, and offered numerous cultural and education events each month.

I loved Pam’s passion and compassion. She was so giving of herself and fiercely devoted to helping caregivers. She was humble and reluctant to accept praise for her work. When she was nominated for a caregiver award earlier this year, she said in an email: “It is not easy for me to be recognized for something I did with a lot of support, help, and caring from others–like you…”

Pam was so supportive of my areas of caregiver advocacy. She introduced me as “the author” when I published my first book, The Reluctant Caregiver, and allowed me to test my care bag prototype that is an integral part of Respite Care Share with members of the Amy’s Place caregiver support group.  img_20170215_172858899

As I was reeling from the news of Pam’s death, I read a piece by a former colleague of mine who just lost his 20-year-old son to cancer. He ended his poignant essay by quoting another journalist, Mike Royko, who wrote after his wife’s death: “If there’s someone you love but haven’t said so in a while, say it now. Always, always say it now.”

We all need the sobering reminder to never take the people in our lives for granted. Never hesitate to call, email, or text your love or appreciation of them.

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AlzAuthors marks 4th anniversary with a book sale

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I am so proud to be part of the AlzAuthors group. I can’t believe the group of Alzheimer’s and dementia writers is marking its 4th anniversary! It has been so rewarding to see this group expand over the years and I applaud the hard work of the core founders who have shared our books to caregivers around the world.

If you haven’t visited the website in awhile, check out the redesign. I love it!

To mark the occasion, AlzAuthors is hosting a book sale and raffle. Choose from 19 free and discounted books. My award-winning collection of personal essays, The Reluctant Caregiver, is just 99 cents during the promotion, which runs through June 27th. (Note: Amazon is still processing the discounted rate as of Friday morning, but you can use this link to buy the book for 99 cents at other major digital book retailers right now.)

You can also enter a raffle to win free books from select AlzAuthors contributors.

Please spread the word to fellow dementia caregivers and thank you for your support!

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Amazing Benefits of Massage for Alzheimer Disease Patients — The Diary of An Alzheimer’s Caregiver


We often overlook the powerful benefits of human touch. Learn how massage could lift the spirits of your loved one with Alzheimer’s. And don’t forget about the benefits of massage for yourself! I find a massage to be so rejuvenating.

via Amazing Benefits of Massage for Alzheimer Disease Patients — The Diary of An Alzheimer’s Caregiver

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June 13, 2019 · 11:54 am

Bipartisan effort to provide families with vital data on struggling nursing homes

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Any kind of bipartisan effort in today’s toxic political climate is reason to cheer. When it involves uncovering nursing homes offering substandard care, it’s all the more reason for caregivers to be grateful.

Pennsylvania senators Bob Casey (D) and Pat Toomey (R) joined forces to release a report titled, “Families’ and Residents’ Right to Know: Uncovering Poor Care in America’s Nursing Homes.”

An investigation into reports of abuse and neglect at nursing homes in the senators’ home state prompted the report. It focuses on struggling nursing homes that have been designated a Special Focus Facility. There are 88 nursing homes that are participants in the program. Approximately 400 nursing homes are identified as candidates. Participants receive more frequent inspections and are identified to the public; candidates are not.

What the senators wanted family caregivers like you and I to know are the names of the hundreds of SFF candidate facilities, so that we can make the most informed decision possible when it comes to our loved one’s care.

You can review a list of SFF participant and candidate facilities that’s included in the report. You can also read disturbing reports of neglect and abuse that has been reported at these facilities, which includes allowing residents to escape, providing inadequate medical care and sexual assault.

I discovered a facility that my father stayed at briefly post-surgery. At the time, the facility admitted they did not have the resources to care for my father, who was in the mid-stages of dementia and often wandered.

Much more needs to be done to ensure that our nation’s nursing homes are providing proper care to our loved ones, but providing this bit of information helps families make more informed choices.

 

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Toxic Positivity Mongers in Dementialand — The Blog That Currently Has No Name

Have to say I agree with this perspective wholeheartedly. As the author of The Reluctant Caregiver, I have empathy for those of us who often find it difficult to be Miss Mary Sunshine all of the time. Sometimes life just sucks. People mean well but the best gift you can offer in such situations is simply a sympathetic ear.

I was recently introduced to the term “toxic positivity.” I instantly knew what the term referred to, and I could relate. I see it on social media….Positive vibes only…Think happy thoughts…There’s always a silver lining…It’s a great day to have a great day. And I can remember times when I was struggling and someone shot […]

via Toxic Positivity Mongers in Dementialand — The Blog That Currently Has No Name

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May 30, 2019 · 8:36 pm

A towering reminder

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This week marked the fourth anniversary of my mother’s death. I’ve hit that mark where it’s hard for me to believe that it was only four years ago. It seems like a lifetime ago.

But the towering water oak tree in my front yard serves as a sturdy reminder. It has been four years ago since the last time I had it trimmed. The reason why I remember the date of such a mundane task is because it was the day that I realized Mom was dying and that I needed to be with her. I remember the chaos of that day, with Mom getting admitted to the ER again for uncontrollable pain. I was trying to field phone calls with the roaring machinery going full-throttle outside. There was an issue with a car parked on the street and I was being asked to assist. I remember wanting to scream, “I don’t care about the damn car. My mother is dying!”

I recently had the tree pruned again, and the foreman proposed May 21, the day of my mother’s death. Somehow I thought it was appropriate. The tree may very well outlive me. It grows, it sheds its leaves in the fall, occasionally branches drop, and then it is tended to and left naked with knots. It’s akin to how time alters the grief process. One is left raw with some hardened spots, but life continues to grow.

You may never be the same after the death of a parent, but life does go on.

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The healing power of humor

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The world lost one of its great comedic talents with the passing of Tim Conway this week. My mom loved watching him on The Carol Burnett Show, and I watched episodes with her as a pre-teen and teenager.

One interesting note was that it was reported last year that Conway had dementia. His daughter had mentioned the diagnosis in court filings. But when his obituary was filed, it made note of the fact that he did not have dementia or Alzheimer’s, but instead had excess fluid on the brain.

I was pleasantly surprised to see the outpouring of condolences from a variety of generations. I was unaware of his later voiceover work for animated productions until I checked out his IMDB profile.

We could all use a little more innocent humor nowadays, with the world seemingly so full of hate and division. While one of Conway’s best-known skits (and funniest) is “The Dentist,” I stumbled upon “Dog’s Life” and thought it was hilarious. Conway became his characters, even when they were non-human. His attention to detail elevated his comedic ability to a whole new level. Enjoy, and share with anyone who needs a mood lifter this week.

 

 

 

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