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.

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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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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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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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Envoy America expanding operations, offering safe rides for seniors

If you’ve read my blog for any length of time, you know one of my biggest concerns is transportation options for seniors. The ability to get safely to appointments and run errands can mean the difference between independent living and assisted living. If we as a society are embracing the concept of living at home until we die, we need to address these issues.

Uber, Lyft and other rideshare services have been a godsend for me, who otherwise uses public transportation to get around Atlanta. But using these services requires downloading a smartphone app, and not every older person has such a device or is interested in learning how to use one.

While Medicaid covers transportation expenses for medical appointments, Medicare does not, leaving middle class families like mine scrambling to make transportation arrangements. When I was my mother’s caregiver, it was one of my biggest challenges. My mother also had a difficult commute to visit my father in the memory care center. More safe, trustworthy transit options are needed.

Envoy America has expanded to the Houston area, after starting operations in Arizona in 2015. The door-to-door transit service, targeted to the older population, offers features like waiting with a person at a doctor’s appointment, and multiple stops.  They’ll also push the cart and get hard-to-reach items at the grocery store. Drivers receive background checks and are specially-trained to work with older clients, including those with memory issues.

The rides aren’t necessarily cheap, but they do offer many more amenities. The service essentially combines a ride share company with a personal care aide. Envoy America charges by the hour instead of distance. In Houston, the average rate is $40 per hour, according to KHOU.

Envoy America has partnered with organizations like the American Cancer Society, the Mayo Clinic and religious organizations.

My Mom would have loved such a service!

The company is expanding gradually which makes sense, and it may be a long time, if ever, that rural populations are served. I hope the concept catches on, because I think there’s a huge, underserved market waiting for just such a service.

 

 

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Marking Mom’s 80th birthday without her

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Today my mother would have been 80 years old.

I wish she was still around to mark the milestone, but only if she was in a healthy state.

My mother and I were total opposites and we clashed plenty, especially during the time I was my mother’s caregiver. Much of those battles, some humorous, some painful, are captured in a series of essays that I hope to publish later this year. (It’s in the final edit phase now.)

But today is a day of celebration, and even though my mom could drive me crazy, she had many wonderful qualities that she tried to pass on to me. In honor of her 80th, here are 8 ways that I remember my mother and try to carry on her legacy.

  • Her sense of humor: Yes, it was corny as could be, but my mother loved to laugh. Even as she faced cancer, she still found ways to sneak in a bit of levity to the situation. We were all better for it. I have a much snarkier, darker sense of humor, but it’s there, and it did help me cope with the difficulties of caregiving.
  • Her love of family: Sometimes I found it smothering, but I know my mother truly loved me. In a world where children can be treated so cruelly, I know I’m fortunate to have had good, kind parents. Everyone has their faults, but even when Mom drove me nuts, she was doing it out of a place of love and concern.
  • Being a caregiver for my father: I may not have agreed with all of the decisions Mom made for Dad near the end of his life, but she earned the right to call the shots after taking care of him on her own for years. I helped where I could, but Mom was the one hands-on with Dad 24/7, as he lost his grip on reality thanks to dementia. Mom made the grueling Greyhound trips to see Dad at the memory care center, while she nursed a broken shoulder. Six months after his death, Mom was diagnosed with cancer. I think she paid the ultimate price with her health, but I know she would do it all over again.
  • Love of nature: My mother loved nature, whether it was animals or scenery. She even loved the blustery mountain winds that whipped around her condo in New Mexico, saying everything had its place. She may have been right, but those winds are brutal! But I do share her love of animals and an appreciation for the natural wonders of our world. I probably don’t stop enough to “smell the roses” but I make sure our birdfeeder stays full, in memory of Mom.
  • Appreciation for the little things: Mom could find delight in the smallest things, whether it was a good cup of coffee or a sunny day. It’s easy to take such things for granted, as I often do, but I try to channel Mom a bit and appreciate those small daily doses of wonder.
  • An interest in others: Mom loved to talk, but she also loved connecting with others. She didn’t discriminate in who she conversed with, and she certainly didn’t think she was better than others. The interest she showed in the lives of service workers who took care of her while she was at the bank, at the grocery store, or at the salon was admirable. I could tell by their reaction that many people treat service workers as if they were invisible. I’m not the chatty type, but I do make sure to make eye contact, smile and thank the person assisting me, to honor Mom’s legacy.
  • Her interest in the world around her: Mom maintained a keen interest in news until she died. She cared about world issues and was troubled by war and famine. She read the newspaper voraciously, and even though rehashing week-old news could test my patience, I admired her vested interest in the world around her. As a journalist, caring about these issues is my job, but it’s also my passion.
  • Her love of music: Mom loved the classic country and classic pop music of her youth, which included Elvis, Patsy Cline, Buddy Holly, Hank Williams, Willie Nelson and many more legends. I’ve had a love of music since my youth, and while I enjoy music from many genres, I gravitate towards these classic country artists, as well as some new ones who are channeling their outlaw spirit.

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‘Fragile Storm’ a short film that delivers a powerful message

 

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Image courtesy of Fragile Storm.

If you have not watched the short film, “Fragile Storm,” I highly encourage you to do so.

The film stars Lance Henriksen and is winning awards at film festivals.

I do not want to give anything away, other than to say push through the first half and stick it out through the ending. It’s a powerful, visceral experience.

It’s free to watch online.

If you get a chance to watch, I’d love to hear what you thought about it in the comments below.

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