What’s the best support a caregiver could receive?

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I am participating in the OpenIDEO’s end-of-life challenge and my idea made the top 50 cut.

The challenge is to reimagine the end-of-life experience for ourselves and for our loved ones. I focused on the end-of-life experience as a caregiver, and the importance of respite care. When caregivers become burned out, everyone suffers. Everyone needs a break, and the end of life can be a longer road than expected. That’s why I submitted the idea of Respite Care Share, which would offer free or discounted vouchers that caregivers could use at hotels and on vacation rental services like Airbnb. Caregiving assistance while the caregiver is away would also be part of the package.

While Medicare covers an allotment of respite care days, and will place a patient in a facility during the respite care period, I found that respite care can be restricted depending upon if there are available beds in a participating facility. Even if you can place your loved one in a facility or find appropriate home care, a nearby weekend getaway can help clear the mind and renew the spirit.

Now I need your help in propelling the idea forward.

The idea as it stands now is that the caregiver respite vouchers would be presented as the centerpiece of a caregiver care package. These packages would include vouchers for respite care and other services, such as massage and other spa services, yoga classes and other personal enrichment services that focus on relaxation.

If you would be so kind as to respond to this 3-question survey, I would greatly appreciate it:

Caregiver Appreciation Survey

Feel free to leave comments on this post as well and share the survey link with other caregivers.

Bottom line, whether you are a current, former or future caregiver, how likely would you be to use respite care vouchers? Is there another form of caregiver support you would rather receive? What else would you want to know about the program?

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Glimpses of yesteryear

Many of us become nostalgic from time to time, especially as we grow older or face uncertain periods of life. High school and even college may seem like a distant memory to many of us, but it can be interesting to flip through a yearbook or photo album and remember the person you once were.

I have no desire to return to those days, but when Ancestry.com sent an email saying it had made available more yearbooks in their collection, I was curious to see if I could find my mother’s yearbook. While I have all of my mother’s school photos because she painstakingly took good care of them, I don’t have her yearbooks.

Mom school

Unfortunately, there were no yearbooks available for her years, but there was one available for 1950, just before she would have been in high school. I flipped through the yearbook in its entirety, as it was a fascinating snapshot to a different place and time. I recognized the names of some of the teachers, as my mom had told me stories about them over the years. I got to see photos of the school building itself, and places inside the school, such as the cafeteria.

It was interesting to read about the different groups that were popular in school back then, such as Future Homemakers of America and Future Farmers of America. For many students of that time period, education would end with high school, as they would soon marry, have children and the husband would work while the wife cared for the family at home. How much the world would change in a 20-year span.

I wondered about some of those kids, the valedictorian and the ones picked most popular, most athletic and most courteous. What became of their lives? What became of their dreams and aspirations?

My mother’s life did not evolve in such a typical fashion. She left her hometown, became a working woman, then went into the Navy, and didn’t marry and have a child until her mid-thirties.

Mom never made it to a class reunion, but for the most part, I think she would have been proud of the woman she became and what she accomplished.

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Taking a stand in your own way

What is there to say about the violent, deadly events over the last week and the last month? We are allowing hate and fear to triumph over love and respect, and we must find a way to reach common ground, or our existence, as individuals and as a nation, will remain in jeopardy.

I think about the way my mom was raised, imperfect yet with a strong, unwavering core of human decency. My mother was raised on a farm in rural Tennessee during the 1940s and 1950s. Racism, Jim Crow laws and the KKK were all thriving. My mother’s family referred to Brazil nuts that they received in their Christmas stockings as “n-word toes.” It was not said with hatred, it was the standard nickname used in those parts, but it illustrates just how comfortable the locals were with using racist slurs.

Yet my mother’s hometown of Newport also had a black doctor, Dr. Dennis Branch. He became well-known enough that he was on “This is Your Life” and had his obituary published in the New York Times. According to the local newspaper, a documentary is in the works. My mother’s family loved and respected Dr. Branch. He made house calls and was kind to the children when they were ill, unlike some of the older, crotchety white doctors. He even accepted produce in lieu of cash for some families.

When my mother was grown and working in Memphis, she encountered her first direct act of racism. My mother was at a diner having a meal when a black woman came in and set at the counter a few seats down from my mother. The waitress saw her, but blatantly ignored her. She served the white patrons who came in after the black woman. My mother watched this unfold and overheard the waitress tell a customer, “We don’t serve those kind here.”

My mother paid for her food and abruptly left, never to return. When she recounted the story, she often wondered how long that black woman set at the counter, waiting to be served. It bothered my mother, that the woman had not been treated with common decency.

Over the years, I have thought a lot about that woman as well.

So my mother may not have walked in civil rights marches, she may not have been the most vocal person when it came to civil rights, but her small action made a big impression on me.

If we all did our small part, make the choice of human decency when it matters in our daily lives, our world would be a better place.

 

 

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Thinking of Mom on her birthday

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My mom on her 77th birthday.

Today would have been my mother’s 79th birthday.

Sometimes I still can’t believe that my father outlived my mother. He was 79 when he died.

It’s also hard to believe sometimes that just two years ago, I was celebrating her last birthday alive with her. I’m glad I made the trip, it’s not something I always did, but at least I did it when it counted the most.

After I passed the year mark of my mom’s death, it felt like a veil lifted. I’m more at peace now and less bombarded by flashbacks of her death and final months.

Today I will try to remember the good things: my mother’s corny but infectious sense of humor, that southern accent she never lost, her generous and kind spirit.

How do you mark the birthdays of those who are gone?

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Time for reflection on Fourth of July

 

Sometimes, I think Mom departed the planet at just the right time. When I look back over the past year, I think of all of the horrible tragedies that have happened, the numerous, deadly terrorist attacks and mass shootings that have taken so many innocent lives.

My mom did not understand all of the politics and history behind international terrorism, but a mother crying over the death of a child in a market bombing? My mother could connect with that based upon a universal sense of humanity and compassion.

Mom Navy portrait 2_edit

Mom never understood why anyone would choose to act out of hate, instead of love. I sometimes was dismissive of her simplistic attitude, but we could certainly use a bit more positive thinking in our world right now.

At the same time, there is deep division in America, as we find ourselves mired in an ugly political season and having to face serious issues that don’t have easy answers. Perhaps those who have already departed are the fortunate ones.

Still, there is much to appreciate about America, and what the country has been able to accomplish over its history. When a terrible event occurs, the outpouring of compassion and generosity that occurs offers a glimmer of hope for our country. My mom always focused on the good in people, and I’m going to try to adopt a bit of that attitude in her memory.

My parents loved America; my mom served in the Navy and my dad immigrated from his beloved homeland of northern Ireland and became a U.S. citizen. Hopefully that sense of pride is not lost forever on future generations of Americans.

Today, I hope you and your family are able to enjoy time together, however you mark the day.

 

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Legendary coach Pat Summitt gone too soon

Even if you are not a women’s college basketball fan, you probably would have recognized the former Tennessee Vols coach and her intense sideline expressions. Pat Summitt, the winningest coach in collegiate sport history, has died from Alzheimer’s complications at the age of 64.

Though early-onset dementia is usually more aggressive, I am still surprised at how quickly the disease claimed Summitt.

Word of her declining health spread on social media over the weekend. After being diagnosed with early-onset Alzheimer’s in 2011, Summitt retired from coaching in 2012 but was an active and passionate  Alzheimer’s activist. Over the last year or so, she had made less public appearances, but I had no idea her health had declined so significantly.

Again, even if you don’t care about sports statistics, Summitt’s record was absolutely amazing. Summitt amassed the most successful coaching career in collegiate history with her head coaching record of 1,098 wins and 208 losses, earning her an impressive .841 win percentage. That’s best college coaching record, male or female.

Known for her fierce competitive streak and steely-eyed intensity, players remembered Summitt as a tough but gifted coach who encouraged them to give their all in each game.

In response to her Alzheimer’s diagnosis, Summitt said, “There’s not going to be any pity party and I’ll make sure of that.” After the end of her coaching career, Summitt worked tirelessly to raise awareness for Alzheimer’s by establishing The Pat Summitt Foundation.The Pat Summitt Alzheimer’s Clinic at the University of Tennessee Medical Center is scheduled to open in December.

Summitt’s passion and dedication will be missed on and off the court. I hope her death at such a young age will at least make people take note that Alzheimer’s is not just an “old person’s” disease, and that it can claim the lives of even the toughest fighters among us. (Though one could argue that death is victory over Alzheimer’s.)

May she rest in peace, and my thoughts are with her son Tyler and the family.

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The most important conversation of all

Many of us have struggled with having end-of-life discussions with our loved ones. But “the talk” is one of the most important conversations we can have with those we care about the most. Christopher MacLellan tackles the talk and offers some practical advice.

The best preparation for tomorrow is doing your best today. H. Jackson Brown, Jr. Having “The Talk” does not have to be hard or difficult, yet the talk does have to happen at some point in our lives. I’m not referring to the birds and the bees talk our parents have with us when […]

via Having The Talk: How To Make End Of Life Wishes Easier — The Purple Jacket

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