Category Archives: Awareness & Activism

November 15, 2017 · 10:00 am

AlzAuthors ebook sale is now live

Caregiver App Month Canva 2017

In honor of National Caregiver Appreciation Month and National Alzheimer’s Disease Awareness Month, the authors group that I belong to, AlzAuthors, is hosting an ebook sale.

From now through Nov. 21, you can choose from over a dozen books written by  AlzAuthors members. While the topics of these books focus on Alzheimer’s and dementia, there’s a wide range of genres, from nonfiction to fiction and self-help guides. Prices range from free to $2.99. The Reluctant Caregiver, my collection of nontraditional essays on caregiving, is part of this sale. I had already reduced the price in half for this special month, but for the next week, you can purchase my book for only 99 cents.

It’s a great time to stock up, just in time for those long winter months when there’s more time for reading.

You can find more information about the ebook sale on the AlzAuthors blog.

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November 11, 2017 · 5:10 pm

‘The Weight of Honor’ sheds light on family caregivers of veterans

On this Veterans Day weekend, I can’t think of a better topic to discuss than the new documentary, “The Weight of Honor.”

I have been following the making of this important documentary for awhile. I donated a very nominal amount (wish it could have been more) and received a lovely thanks in the film’s credits. It’s an honor to help support this documentary, which depicts those who often remain invisible: the family caregivers of military veterans. The filmmakers followed a group of female caregivers of catastrophically wounded veterans for five years, charting their triumphs and struggles.

Caring for wounded warriors is a unique experience, as debilitating physical wounds are often accompanied by equally brutal psychic wounds. PTSD can make recovery a challenge, which means the burden on caregivers is even greater. Along with that, many military wives are young and tending to children when their wounded husband returns home, requiring constant care. The documentary doesn’t shy away from the consequences of stress and caregiver burnout, and how it can end up straining relationships.

Overall, “The Weight of Honor” displays the tremendous resiliency that these caregivers exhibit every day of their lives. A life forever changed by the violence of war, but a life that they are determined to make the best of for their families. I’m thankful that the filmmakers chose to tell their stories in such compassionate detail.

I hope you get a chance to see this film. It is available for streaming on Amazon, YouTube and other major platforms. I’d love to hear what you think about it.

 

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November 8, 2017 · 8:00 am

Understanding the importance of self-care for Alzheimer’s disease caregivers

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Image courtesy of Pixabay.

Here is a guest post from Lydia Chan of Alzheimer’s Caregiver. Her post covers a topic I strongly support: self-care for caregivers.

November is National Family Caregivers Month and National Alzheimer’s Disease Awareness Month.  It’s important to understand the implications of caring for Alzheimer’s patients.  The disease is far-reaching, and being a caregiver is taxing physically and mentally.  If you’re a caregiver for someone with Alzheimer’s, here are some ways to offset the stress you may be experiencing.

If you care for someone with Alzheimer’s Disease, you are not alone.  There are almost 15 million dementia and Alzheimer’s caregivers in America.  At this time, there is no cure for Alzheimer’s, and there is limited relief for symptoms.  This leaves caregivers with what experts at HelpGuide describe as “a series of grief experiences as you watch your loved one’s memories disappear and skills erode. The person with Alzheimer’s will change and behave in different, sometimes disturbing or upsetting ways. For both caretakers and their patients, these changes can produce an emotional wallop of confusion, anger, and sadness.”

Potential burnout.  Caring for a loved one struggling with this disease can lead to burnout.  The chronic stress of the situation is emotionally and physically exhausting, and can leave you with no energy or interest to care for yourself or anyone else.  Here are signs some experts say indicate you may be reaching the breaking point:

  • Abuse of alcohol or medications
  • Unhealthy changes in appetite – overeating or undereating
  • Depression, hopelessness, loss of energy
  • Feeling alienated
  • Lack of self-control physically or emotionally
  • Rough treatment or neglect of the patient
  • Inability to sleep
  • Inability to concentrate
  • Not keeping appointments

Self-care for the caregiver.  Because you are traveling this difficult road, it’s essential that you take care of yourself.  Experts at the National Institute on Aging recommend the following:

Connect.  Participate in a caregivers’ support groups and spend time with friends.

Recreate.  Spend time doing your favorite hobbies and activities.

Maintain your physical health.  Eat right, exercise, and get enough sleep.  Keep up routine medical exams.

Get help.  Don’t try to do everything all the time.  Take breaks daily and ask family members and friends to assist with some caregiving duties. Be specific when you ask for help from other family members and friends.  For instance, ask for someone to prepare supper or take your loved one shopping.  If you are having trouble finding help, you can pay someone to help for a couple hours per day.  If that isn’t possible, even a couple hours per week can provide relief.  If you aren’t sure how to find services, check out the Eldercare Locator.

Spend time with Fido.  Part of your self-care routine can include time with your four-legged family member.  According to some experts, dogs are a terrific relief for anxiety and depression.  Here are some of the ways your pooch can improve your well-being:

  • Lowers your blood pressure.
  • Offers a soothing presence.
  • Reduces cortisol.
  • Helps you forget negative emotions such as anger and frustration.
  • Offers unconditional support, love and companionship.
  • Encourages exercise.
  • Gets you outside to enjoy fresh air and sunshine.
  • Increases social interaction.

Make sure your time with your dog is a stress-reducer and not a stress-inducer.  If you have trouble getting to your dog’s needs at times, hire a dog walker to reduce stress associated with getting your pup exercised when you can’t be at home.

Your needs as a caregiver.  As someone who cares for an Alzheimer’s patient, you are under a fair amount of pressure.  Without proper care of yourself, you risk burnout.  Embrace a healthy, balanced lifestyle with good self-care. You will have more to offer yourself and the loved one you’re caring for.

For more respite care resources, visit Respite Care Share.

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October 30, 2017 · 1:20 pm

Can America afford to age in place?

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Joe Zlomek/Freeimages

While many people, including myself, would prefer to age in place, for financially strapped communities throughout America, the trend is straining limited resources.

An article about my mother’s home state of Tennessee and its struggle to care for a rapidly growing older population is a scenario taking place in many states. Many state, county and city budgets are already overwhelmed with issues ranging from high unemployment to the opioid epidemic. I read one article that said older people calling 911 due to falls at home was straining EMS budgets. While the federal government contributes money to elder care each year via the Older Americans Act, it’s simply not enough to address the needs of a growing elder population.

In Tennessee, thousands of older people are on waiting lists for government assistance programs. The organizations do the best they can, but those cited in the article said more resources are needed, and officials are going to have to address the issue soon.

Transportation was listed as a major issue. While some older people may be physically healthy and not need in-home assistance, they may no longer be able to drive and need transportation options to maintain their quality of life and independence. This of course was an issue for my parents. Thankfully, they did have a county-funded shuttle service that they used for years. (Most county officials were against the idea of the shuttle, however. Its funding is always on the verge of being cut.)

Meal delivery was another major need. The meal delivery service also serves as a status check on the older person, so it has a dual purpose. For those in rural areas, this can be a lifeline.

In Tennessee, supporting someone staying in their home costs $3,000-$15,000 annually, while putting a person in a facility costs over $50,000 annually. You don’t have to be a math whiz to see what is the financially efficient solution. Unfortunately, the federal  government has not been proactive in addressing the issue. Tennessee reports some success at the state level, working with community organizations.

Has your community addressed aging in place issues? I’d love to hear about programs that are working in your area.

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October 22, 2017 · 7:21 pm

Two isolated groups join forces via caregiving

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Photo: svklimkin/Morguefile

Those of us who have cared for our elders know how advanced age and health issues can lead to social isolation. On the younger end of the spectrum, those with learning disabilities can feel ostracized from their peers. An innovative program in New York brings these two groups together and has created a beautiful sense of purpose for all involved.

Daniel Reingold, the CEO of the Hebrew Home at Riverdale, founded HOPE in 1995, originally as a way to fill job vacancies at the nursing home by employing those born to drug-addicted mothers, The Associated Press reported. HOPE stands for “Health Care Offers Permanent Employment.” Over the years, the program has evolved to include those with autism and intellectual disabilities.

https://twitter.com/APEastRegion/status/919881038058442753

The thread that binds these two seemingly disparate groups is caregiving. The youths assist nursing home residents with daily tasks, and the nursing home residents help the young carers with academic tasks like reading, by giving them real-world history lessons by sharing their life stories, and by being patient as the youths learn to perform caregiving tasks.

It’s a win-win situation. The kids can graduate and work at the nursing home if they choose, or explore other job opportunities. Nursing home residents are energized by the presence of young people, who are eager to show them what they can do on their smartphones and other gadgets.

The kids also learn important lessons on life and death that their peers might miss. Favorite residents die, and the students have to learn how to cope with the loss.

I love to see innovative solutions to social issues that often get ignored, and hope such success stories will inspire others to implement similar programs.

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October 2, 2017 · 9:00 am

Addressing aging issues, village by village

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Anna Wolniak/Freeimages

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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September 25, 2017 · 7:49 am

High-tech invention helping those with dementia reconnect with memories

Embed from Getty Images

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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September 16, 2017 · 1:56 pm

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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September 11, 2017 · 11:42 am

Dealing with a natural disaster as a caregiver

Embed from Getty Images

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.

https://twitter.com/DoHoBOB/status/901862603395301376

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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September 5, 2017 · 8:00 am

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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