Holograms of the departed

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I watched an intriguing movie recently that I thought might be of interest to those of you who have lost loved ones. It’s called, “Marjorie Prime,” and is based upon a Pulitzer-nominated play.

The movie is set in the near-future, where there are lifelike holograms that can be programmed to act like the dearly departed, and have the ability to learn via artificial intelligence.  The movie’s central concept is: “What would we remember, if given the chance?”

Marjorie, 86, is dealing with memory loss and chooses to create her deceased husband’s hologram when he was in his prime, which her daughter, played by Geena Davis, finds creepy. Davis perfectly captures the reluctant caregiver role, and I could relate to the mix of emotions she expresses in the movie. Lois Smith as Marjorie was brilliant. For you “Mad Men” fans, Jon Hamm plays Marjorie’s husband in hologram form.

I found the film to be very moving and thought-provoking. While you could label it science-fiction, it’s much more rooted in the human condition than in mechanical processes. The holographic “primes” look like normal people, not some CGI monstrosity. It made me think, wow, if I had the option to create holograms of my parents, would I, and if so, how would I program them? Would I leave out my mother’s traits that annoyed me? If I did, would she be an accurate representation of my mother? I think it would be easier with Dad; I would love to hear him sing Bing Crosby tunes and serenade me on my birthday. Still, Dad’s life stories would be incomplete because I don’t remember all of the details.

The film made me think about creating pet holograms, but would that be as rewarding? So much of an experience with a pet is tactile in nature: petting, hugging, stroking their fur.

After we lose a loved one, many of us think about what would we do if we had one more moment with that person. Sometimes it’s expressing things left unsaid, other times it’s apologizing for regretful actions. “Marjorie Prime” is an intriguing study on what technology could offer to help bridge the worlds between the living, the dead, and our memories of them.

 

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Addressing aging issues, village by village

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While the concept that “it takes a village” has become a platitude in popular culture, there are people out there actually putting the village concept to the test. I’m now following the village concept in earnest, and will be interested in seeing how it develops.

I first heard of the concept through Kay Bransford, who has the excellent Dealing with Dementia blog.  She lives in McLean, Virginia, which is home to an active village community. The village is volunteer-based, and supports the needs of its inter-generational community members, with an emphasis on the aging population and the special needs of those with disabilities.

The idea of a grassroots movement that allows one to age-in-place without heavy government involvement is intriguing. The local, community-based approach makes the most sense to me, because neighborhoods have their own individual challenges and opportunities. We also shouldn’t hold our breath that the federal government is going to address the needs of our rapidly aging population anytime soon, no matter who’s in office.

The village movement began over 15 years ago, and the Village to Village Network was established in 2010. Over 200 villages now exist in 45 states. Members help each other by looking out for one another, making sure those who need help aging in place have access to affordable, dependable services for things like home repairs and running errands. Village communities work with existing government and community agencies to address any gaps in care and resources.

I think about how much a strong village model could have helped my parents as they dealt with medical issues and aging concerns.

What do you think about the village concept?

 

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High-tech invention helping those with dementia reconnect with memories

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It only took 25 hours without power post-Hurricane Irma to realize how much we rely upon technology to manage our daily lives. It’s difficult for me to imagine life without the internet, because of its ability to supply endless amounts of knowledge and connect me to people with similar interests around the world. At the same time, I’ve had multiple people who I consider to be tech-savvy who have asked me about paperback editions of my book, because they prefer the feel of a print book versus the digital format.

I understand that preference, as well as the benefits and consequences of living in a digitally-driven world. One often-heard criticism is that technology can divide us, and make us more isolated. And while that can be true, a researcher has utilized a popular program from tech giant Google to develop a tool that can help bring those with dementia closer to the memories of their past.

BikeAround features a stationary bike placed in front of a screen. In tests of the prototype by Swedish engineer Anne-Christine Hertz, those with dementia are asked about where they grew up. Google Street View is used to create a “virtual ride down memory lane.” The theory is that the physical stimulation from pedaling helps stimulate the brain as well, helping those with memory loss recall details of their past more readily. You can see it in action below, I found the video very moving.

It was powerful to see this invention in action. We know that many people with dementia can recall the past, particularly their childhoods, better than they can the present, but the amount of details the man could remember was remarkable.  I would like to see this or similar devices placed in memory care centers and memory cafes.

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Free books for my fellow bookworms

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UPDATE: Over 170 books given away, thanks for the support! Look for more promotions soon.

This post will be short and sweet, to allow my fellow bookworms to do what they love most, read!

To mark the debut of The Reluctant Caregiver, my caregiving essays collection, I am participating in a free book giveaway via Instafreebie. Not only can you download my ebook for free, you can download a total of 2 dozen books in the memoir and travel genres for free. All you have to submit is an email address.

Instafreebie Travel & Memoirs Giveaway

The promotion ends this Saturday, Sept. 23, so claim your free copies today.

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We are all members of the Caring Majority

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I spent part of this week in Minneapolis, attending Caring Across Generation’s Field Gathering. Family and paid caregivers, along with caregiver advocates from all over the country came together to discuss strategies on how to improve the lives of caregivers and the quality of care for those at every stage of life who needs assistance.

It was inspiring to be in a room full of people who are determined to fight for something so important that has been ignored by many government officials and society for too long. Whether it’s protecting Medicaid funding, pushing for paid family leave on a state and federal level or expanding quality care options and respite opportunities for family caregivers, there are a lot of issues to address.

Some states, like Hawaii, Maine, Minnesota and Washington, to name just a few, are making inroads at the local and state level. Hawaii passed the Kupuna Caregivers Act this summer, which pays family caregivers who work $70 per day to cover the cost of caregiving. Take Action Minnesota is working with cities on securing paid sick leave, and the Maine People’s Alliance is moving forward with its support of a Universal Family Care bill and Universal Home Care ballot initiative. The more programs that are established at the local and state level that are proven to be successful, the more we can move the needle to encourage other states to implement similar programs, and eventually, gain support at the federal level.

Long-term care is one of the core issues that Caring Across Generations is working to address. Many people don’t realize that it’s Medicaid, not Medicare, that picks up the costly expenses of long-term care for our elders once personal finances are exhausted. In addition to protecting this funding, we need to work on making it easier for people to age at home. This will help reduce the cost of care.

These issues should be bipartisan, but sadly, as Americans, we’ve made values like caring for our most vulnerable populations a point of contention. But the Caring Majority is growing. We are all part of it, even if some people don’t realize it yet. Once illness touches your family, you learn very quickly how important good care is, and that it is essential. Everyone alive right now was cared for as a baby, and will likely be cared for again as they grow older. We all have a responsibility to alleviate the financial, physical and emotional burdens of caregiving.

If you are interested in learning more about Caring Across Generations, check out their website or visit them on Facebook and Twitter. If you are interested in sharing your caregiving story or attending next year’s gathering, reach out to me in the comments section below.

 

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Dealing with a natural disaster as a caregiver

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As a caregiver, every day may seem filled with disasters, both small and large. Caregivers constantly are dodging landmines, whether it’s working with a difficult patient, controlling pain, managing new symptoms or handling finances. That’s one reason why I referenced the metaphor in my new collection of caregiving essays, “The Reluctant Caregiver: Missives from the Caregiving Minefields.”

Back-to-back major hurricanes in the U.S. revealed another area where caregivers must be prepared: natural disasters. Most of you probably saw the heartbreaking photo of nursing home residents sitting in floodwaters in Texas during Hurricane Harvey. Fortunately, they were all saved, and staff risked their lives to stay with them all night long.

Still, I couldn’t help but wonder what, if any, were the evacuation plans for the nursing home? From what I read, it was located near a bayou, so the flood risk was real.

As people prepared for Hurricane Irma this weekend, I heard multiple reports about care facilities, including those for Alzheimer’s care, making the decision not to evacuate. It may seem like a no-brainer but there were complications. Gov. Scott of Florida implored for more nurses to step forward to volunteer in special needs shelters. At the time, they were understaffed, making some care facility managers leery of evacuating and not having a safe space for those with complex care needs.

Dementia caregivers know how any disruption to the normal routine, along with a chaotic atmosphere, can exacerbate symptoms. Can you imagine trying to deal with wandering patients in the chaos of a shelter? I’m not trying to judge those who made the decision to stay, but I do think it is a good reminder for anyone who is caring for a loved one right now to make an emergency plan.

If a natural disaster strikes your area, are you prepared to evacuate with your loved one? Do you know where you will go? How will your loved one’s medical needs be met? Do you have friends or other family members that would be willing to take you in temporarily? If you make the decision to stay behind, do you have a safe, accessible place in your home that will offer protection?

My parents never had to evacuate, but a wildfire did get pretty close to their neighborhood at one point, and I remember my parents being uneasy about the thought of evacuating. Fortunately, they were both in good health at the time and the fire was brought under control. I can’t imagine trying to keep track of my father at a shelter once he developed dementia, because he wandered. When my mother was recovering from colon cancer surgery, trying to change a colostomy bag in the very public realm of a busy shelter would have been a challenge.

While the images that have come out of Texas and Florida over the last couple of weeks have been heartbreaking, it is a good time for the rest of us to make sure we are prepared when Mother Nature’s fury comes our way.  Sometimes, the worst moments can bring out the best in us, as when this man at Lowe’s gave up his generator to a woman who needed it for her father who requires an oxygen tank.

Consider giving to a hurricane relief fund established by Caring Across Generations. All proceeds will go directly to local organizations in Texas and Florida who assist caregivers.

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My collection of caregiving essays is now available

I’m excited to announce that The Reluctant Caregiver, my collection of caregiving essays, has been published and is available on Amazon and most digital bookstore platforms. It will be available as a paperback soon.

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Those of you who have followed The Memories Project for awhile know that I’ve been talking about publishing such a book for quite some time. It was very satisfying to hit the publish button.

I hope you’ll consider reading the collection, and telling others about it. Do keep in mind that the book presents a nontraditional perspective on family caregiving, and does contain some profanity. There are some graphic details about caregiving included in the essays, but also some humorous moments.

I think many caregivers will be able to relate to the roller coaster of emotions that accompanies any caregiving journey. I try to capture the good days and the bad days, the inspirational moments and those trying times that have sparked my interest in being a caregiver advocate. My ultimate goal is to reassure those caregivers who may be struggling, and to encourage caregivers to reach out if they need help.

Where to buy The Reluctant Caregiver:

Amazon: http://a.co/82c41dY

Other digital bookstores (including iBooks): http://books2read.com/u/3L9DnN

I’m available as a guest blogger and if you are promoting a book yourself, please reach out to me for cross-promotion opportunities.

Thanks for your support of The Memories Project. The feedback I’ve received from the blog and the connections I’ve made have helped turn The Reluctant Caregiver project into a reality.

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