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

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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.

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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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August 29, 2017 · 8:00 am

Coping with the difficult emotions of caregiving

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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?

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August 22, 2017 · 8:10 am

Finally, justice served for sexually abused nursing home residents

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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.

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August 15, 2017 · 8:26 am

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

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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.

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August 8, 2017 · 10:15 pm

Glen Campbell leaves behind more than a musical legacy

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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.

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August 1, 2017 · 7:00 am

Family’s gift to caregiver an inspiring way to pay it forward

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Photo by Marius Muresan/Freeimages.

There was a wonderful story posted on CNN recently, and it reinforces the fact that there are still good people doing good things in this world, even as they faced difficult circumstances in a world that seems increasingly unkind.

The Wright family in Georgia hired a caregiver, RonTunDe Hector, to provide home hospice care for Judy Wright, who had Parkinson’s disease. After positive feedback from his father, Chris Wright, Judy’s son, arranged to meet RonTunDe in person.

As it turned out, they already knew each other.

Hector had been going through a rough time a few years before, and ran out of gas on the highway. As she walked down the road with her gas can, a man pulled up and asked if he could help. She explained the situation and the man filled up her tank and gave her $40.

That man was Chris Wright.

Though the pair were reuniting once again in the midst of difficult circumstances, the bond was strong. Hector even accurately predicted the day Judy Wright died.

After Judy’s death, the family wanted to honor Hector’s compassionate care and help her continue growing in her profession. The family raised funds to send Hector to nursing school, a dream she had long had but was unable to afford.

The online campaign has now raised over $33,000, funding by over 800 donors. The Wright family’s generous act will now help countless other people who will be cared for by Hector.

 

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July 26, 2017 · 8:00 am

Breaking the news to someone with Alzheimer’s that their spouse has died

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Photo credit: Pixabay

Of all the things families have to deal with when their loved one has Alzheimer’s, explaining that a loved one has died is one of the most heartbreaking and difficult issues to handle. Guest author Michael Longsdon of ElderFreedom offers tips on how to approach this sensitive subject, and how caregiver should prepare for the moment.

How do you tell your loved one with Alzheimer’s that their spouse has died? It’s a tricky proposition – one that people with aging parents dread. It would be a lie to say it’s a easy process, but it can be manageable. Here are some tips.

Pick the right time

This is a judgment call, but some common strategies for having this tough conversation include making sure the person is in a safe, comfortable environment, trying to pick a more lucid moment to break the news, and trying to have only one person deal with the news as to minimize possible confusion.

Be straightforward

Every surviving spouse has the right to know that their loved one has died – no matter their condition. When having the first conversation (of many, to be sure), you must be as straightforward as possible. Speak slowly and calmly and tell them that their spouse has died. Avoid euphemistic phrases like they passed away or they are going to be gone for a while. You don’t have to get into the details, and you should stick to the basics if you can. If they ask for details, however, you should be honest.

Offer to go through the deceased’s belongings with them

The practical reason for doing this is that following any death, the surviving loved ones must go through the deceased’s belongings and decide what to keep, what to pass on to loved ones, and what to throw away. For someone with Alzheimer’s this process is vital because you don’t want them to have to do it themselves, plus you don’t want them to have to stumble upon troves of their dead spouse’s belongings, triggering confusion or agitation.

But it can be even more important in the immediate aftermath of the death. Going through old clothes, photos, jewelry, and keepsakes can help ground your loved one to the situation, and in some cases this methodical sorting through possessions can be cathartic. Your loved one may want to hold onto a particular item, which may give them comfort. Let them.

Don’t mistake forgetfulness for denial

“When dementia is severe, people aren’t just in denial. They truly have not been able to form the new memory that lets them remember their beloved family member or friend has died,” says caregiver Carol Bursack.

You’re going to be faced with times that your loved one simply doesn’t seem to be on the right page about their deceased spouse. They may think they’ve gone on a trip, or that they’ve left them. They may ask where they are, even hours after you told them about the death. Don’t think of this as denial. It’s simply a product of their Alzheimer’s. When it comes to what you do in these situations, it’s up to you. Judge the situation and determine whether it’s better to reinform them, or whether you should “punt” and either work around the truth or redirect them with something else. There’s really no right answer here –  it all depends on your loved one’s state at that very moment. It can change from day to day.

You may have to “break the news” to your loved one with Alzheimer’s more than once. How you choose to handle these situations is up to you. Most professionals believe, however, that the initial conversation is a must – both for ethical and practical reasons. Try to find a good time to have the conversation, remember to be straightforward, respect their reaction, and never try to limit their grief.

 

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July 20, 2017 · 8:47 am

Power of animals to offer brief respite for caregivers

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I visited a local cat cafe for my birthday, and it’s a nice way to spend an hour surrounded by cats with a good cup of coffee. It made me think about how spending time with animals offers the harried family caregiver a convenient, affordable respite from the drudgery and stress of daily duties.

I’m always on the lookout for ways caregivers can slip away for an hour or two and recharge, while their loved one is at adult day care or being cared for by someone else.

For those who love cats, watching them can be relaxing and entertaining. Just observing a cat sleeping is calming, and kittens offer plenty of entertaining hijinks during play time. Petting a purring cat has been shown to have a calming effect.

Dog lovers can visit animal shelters or rescue organizations. Many times, volunteers are needed to walk dogs or just socialize with dogs waiting for a forever home.

Owning a pet may be overwhelming if you are a caregiver, so these options allow you to still connect with the joy animals offer without adding to your workload.

Another thing I love to do is visit butterfly habitats. I found that to be such a soothing, surreal experience, walking through an area filled with fluttering butterflies.

Some may have zoos or other wildlife retreats near them that they enjoy visiting.

Anything that gets you outside of your head for a brief period of time, and focused on something delightful is a worthwhile respite. (It would be nice if caregivers could enjoy a week-long getaway of their choice, but we know that’s difficult to do in many cases.)

We also know that animals can have a positive impact on those with dementia and other diseases. I remember visiting a cat cafe in Montreal, and the daughter had brought her mother, who appeared to have dementia. They both enjoyed their visit.

For more respite care resources, visit Respite Care Share.

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