Category Archives: Awareness & Activism

We are all members of the Caring Majority

This slideshow requires JavaScript.

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.

 

Advertisements

1 Comment

Filed under Awareness & Activism

Dealing with a natural disaster as a caregiver

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.

Leave a comment

Filed under Awareness & Activism

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.

Pageflex Persona [document: PRS0000038_00069]

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.

5 Comments

Filed under Awareness & Activism, Memories

Coping with the difficult emotions of caregiving

love-1471183-639x380

Photo by John Meyer/Freeimages

Caregiving is a tough task, both physically and emotionally. There are many emotions that can arise while one is a caregiver, and many are not pleasant. However, it is important to recognize, acknowledge and process these feelings. Caring.com offers an excellent article, The 7 Deadly Emotions of Caregiving: How to Cope.

The 7 emotions the article focuses on includes:

  • Guilt
  • Resentment
  • Anger
  • Worry
  • Loneliness
  • Grief
  • Defensiveness

The article explains how these emotions arise while caregiving, the risks that come with these feelings and most importantly, what you can do about it. Many caregivers will find the above list familiar; some of us will experience one emotion more than another. For my mother, it was loneliness and worry; for me, it was worry, guilt and resentment.

I think it is important as caregivers to acknowledge what we feel, and equally as important to figure out how to best process these emotions so we don’t damage our own physical and mental well-being.

What caregiving emotions do you feel most consumed by, and how do you cope?

5 Comments

Filed under Awareness & Activism

Finally, justice served for sexually abused nursing home residents

I’ll be the first to champion for caregivers, but I’ll also be just as determined to defend those who are assaulted by abusive caregivers.

Back in February, I wrote a post about a CNN special investigation, which uncovered an epidemic of sexual assaults taking place in America’s nursing homes. In most cases, due to the victim often being cognitively impaired or too physically frail to testify, the accused were never convicted of their alleged crimes.

Now, one of those caregivers, Luis Gomez, has been convicted on multiple counts of rape, and sentenced to at least 23 years in prison.

For the record, Gomez maintains his innocence. But the testimony of two nursing home residents, one who came to court with two oxygen tanks, and described the sexual assaults that Gomez inflicted upon them, was enough to convict the man who had long been accused of such crimes but had avoided prosecution.

Not only were the two victims who testified in court heroes, so was a nurse, who, against orders from her boss, decided to call police about the assault accusations. That prompted an investigation which led to charges and eventually a conviction. Krista Shalda was fired her nursing job at the facility where the assaults took place after she called police. She told CNN that she will likely be blacklisted from working in nursing homes, because they don’t like whistleblowers.

While it is a relief to know that one sexual predator has been removed from preying upon helpless patients, we know from CNN’s investigation that there are many more like him still working in nursing home facilities. I can only hope that Gomez’s conviction and the hefty fine that the nursing home paid will make other facilities take note. Stricter background checks needs to be implemented, and all patient complaints about staff members should be investigated rigorously.

Leave a comment

Filed under Awareness & Activism

Capturing the power of music in the midst of Alzheimer’s

piano-keys-1514137-640x480

Photo by Jean-Pierre Ceppo/Freeimages

I read a beautiful, poignant story earlier this month about a man with Alzheimer’s who is losing the ability to play the songs he wrote for his wife. These were songs he knew by heart, so he never wrote them down. No one expects a disease like Alzheimer’s to claim what is most precious and sacred to you.

Steve Goodwin, 67, became frustrated when he was unable to play his compositions. That’s when in walked an angel named Naomi Laviolette, a family friend. She plays the piano and asked if Goodwin could help her reconstruct his compositions. She’s recording them note for note so that Goodwin’s musical legacy will be preserved forever.

Goodwin’s wife, Joni, was moved to tears when she heard Laviolette play her husband’s music that she feared was lost. The pair have been married 47 years. She told CBS, “”Losing the songs would be like losing him.”

Goodwin even managed to write a new song, with Laviolette’s help.

1 Comment

Filed under Awareness & Activism

Glen Campbell leaves behind more than a musical legacy

I was saddened to hear about the death of country music legend Glen Campbell, though he is now free from Alzheimer’s harrowing grip. It’s a huge loss in the music world, where Campbell was much more than just the “Rhinestone Cowboy,” he was an amazing session musician who could play a variety of instruments and his guitar work was phenomenal. He recorded some of the most influential songs of our time, and made them his own.

If you want to see Campbell performing all of his hits with a symphony, check out this YouTube video. He’s in great form here.

Of course, there was the man behind the music who struggled with a dark side that hid under his good guy public image. As Campbell hit middle-age, he became tabloid fodder, with multiple rocky marriages, kids he hardly knew and a bad cocaine and alcohol habit. He eventually got cleaned up and settled down with Kim Campbell, who would be tested when it came to the marriage vows of “in sickness and in health.”

Campbell and his family were very open with the public about his Alzheimer’s diagnosis. It was a brave decision, and if you watch the moving documentary concert film, “I’ll Be Me,” you’ll see the triumphs and challenges that presented itself as Campbell performed with Alzheimer’s on his final tour. His bravery, and his family’s openness, helped renew the dialogue on Alzheimer’s disease, raising public awareness. In turn, that interest helps advocates demand more support for research, care options and caregiver support.

As Campbell dealt with the latter stages of Alzheimer’s, his family kept the public updated, sometimes sharing painfully honest accounts that any of us who have dealt with this heartbreaking disease can relate to. I had a feeling Campbell wouldn’t be around much longer when his daughter Ashley posted this heartbreaking photo on Father’s Day.  It reminded me of my father during the last months of his life, when Alzheimer’s had taken its toll.

Campbell’s family released an album of his final studio recording in June. The title, appropriately, is “Adios.” Farewell Glen, thanks for the memories.

Leave a comment

Filed under Awareness & Activism