Monday, June 29, 2015

Glen Campbell: I’ll Be Me

Last night I watched  Glen Campbell…I’ll Be Me on CNN. The 2014 film documents Glen’s Alzheimer’s journey.

I heard about the documentary a few years ago at the Alzheimer’s Advocacy Forum. My mom went to D.C. with me in 2013 when Glen Campbell was there. He fairly oozed charm and posed to have his photo taken with many of the ladies, including my mom. 

I’ll Be Me was painful for me to watch. It brought back memories of Jim’s loss of communication and musical skills. At least only family witnessed Jim’s problems and not a paying audience.

The family told of their struggles to make sure they walked the fine line between the cathartic benefits of Glen performing and being vigilant of him embarrassing himself. Audiences were tolerant. If he played the same song twice, so what? At least they got to see him perform.

Campbell’s physician felt that performing on his “Goodbye Tour,” doing what Glen loved, helped
him maintain the ability to function longer. Sometimes his daughter, Ashley, had to tell her dad the correct key for certain songs. During their “dueling” instruments, her with a banjo, him with his guitar, she admitted that sometimes he didn’t always follow along. Glen relied heavily on teleprompters to remind him of the words to songs he had sung for years.

During his doctor visits, I heard some of the same questions with similar answers during Jim’s visits with his neurologist. When asked questions, he couldn’t answer, Campbell said, “I don’t worry about those things.” The doctor asked him who the first president of the United States was and Campbell replied, “My goodness, I don’t know. I don’t use that very much lately.” Jim would typically say, “I have no idea,” in a tone that indicated he didn’t care to know either.

Ashley testified in front of a congressional hearing on Alzheimer’s. Advocates in D.C. for the Alzheimer’s Advocacy Forum, wearing purple sashes, packed the room.  Ashley’s emotional testimony explained the changes in her relationship with her dad. She said it was hard for him to recall her name. Their times fishing together no longer lives in his memories.

When watching old family films, Glen asked, “Who’s that?” His wife, Kim, gently supplied the pertinent information: “It’s you, honey,” or “That’s your first wife,” or “It’s your oldest daughter.”

Jim once looked at photos from our honeymoon. I pointed at a photo of me, and playfully said, “Do you know who that is?” His answer, of course, was, “I have no idea.” The devil is in the details. Some of the most hurtful moments are when you realize what had been memories shared, become your memories alone.

The film shows the relentless progression of Alzheimer’s disease. By the time of his final performance on stage, Glen did not know it was his last performance.  Cal Campbell said that when his dad performed, “He actually becomes himself again.”

The story ended with the recording session of “I’m Not Going to Miss You.” At this point, Glen is already fading away but his eyes sparkle when he finally gets into the song. This song really tugs at the heartstrings. The idea stemmed from Campbell’s remark that he couldn’t figure out why everyone was so worried about him having Alzheimer’s. He said, “It’s not like I’m going to miss anyone, anyway.”

Kim finally placed Glenn in a home where he could get twenty-four hour care. He is reportedly happy and healthy. He is losing his communication skills and doesn’t recognize many of his visitors.

As is often the case, family is feuding. Two of his children by a previous marriage have taken legal action against Kim. This family is torn apart at a time they should be pulling together. Individuals must arrive at acceptance in their own way and on their personal time schedule.

Glen Campbell’s Alzheimer’s story is heartrending and, oh, so familiar to millions who have lived a similar story. 

Copyright © June 2015 by L.S. Fisher

Saturday, June 20, 2015

What Survivors?

I’ve been seeing images of a “Limited Edition” T-shirt for Alzheimer’s Awareness. The shirt says, “Supporting the Fighters, Admiring the Survivors, Honoring the Taken, And Never Giving Up Hope, Alzheimer’s Awareness.” People seemed to be excited about buying these T-shirts.

I don’t want to burst the bubble of enthusiasm, but this shirt certainly does not promote Alzheimer’s awareness. At our annual Walk to End Alzheimer’s, we cannot have a victory lap for our survivors. The cold, hard fact is that Alzheimer’s leaves no survivors.

Alzheimer’s is the sixth leading cause of death in the United States and the only one in the top ten that cannot be prevented, cured, or even slowed. Twenty million Americans understand this harsh reality: five million with the disease and their fifteen million unpaid caregivers.

Alzheimer’s does have fighters—millions of them. We have warriors with the disease and care partners who raise awareness and dollars so that we can have survivors someday. These brave people share their stories, their struggles, their highs, and lows as they live life to the fullest. They celebrate each moment of joy and refuse to cave in to despair.

Several years ago, I met a forty-year-old woman in Washington, D.C., who had early onset Alzheimer’s. As we told our personal stories to our senators and representative, she said, “I know it’s too late for me, but I want a cure for my children. I don’t want them to have to go through this.” She is gone and has been for several years, but we continue her fight to make her wishes come true.

Family members and loved ones honor the taken. Jim was taken before his sixtieth birthday. We honor the loved ones we’ve lost each time we join a Walk to End Alzheimer’s. We honor them by becoming advocates, or “voices,” for Alzheimer’s research and hounding legislators to push for increased funding.

Advocacy makes a difference! This week we received word that due to the relentless dedication of Alzheimer’s advocates, increased research funding is making its way through the legislative process. The House Labor, Health and Human Services Appropriations Subcommittee has approved an additional $300 million in Alzheimer’s research.

Harry Johns, Alzheimer’s Association CEO said, “Should this increase become law, it will be the largest annual increase ever in federal Alzheimer’s research funding. Following today’s actions, the full House Appropriations Committee is expected to consider this legislation next week. We also anticipate that the Senate will begin to move their own version of the FY16 Labor-HHS bill next week.”  

Advocates will never give up hope! The National Plan to Address Alzheimer’s Disease sets forth a goal to find a cure or effective treatment by 2025. With adequate funding to support the bright scientific minds at work on a cure, our goal is within reach.

When our work is done, I’ll be at the front of the line to buy a T-shirt that has “Admire the survivors” on it. Until then, we need to keep the momentum going and stick to the Plan to find the elusive cure and/or effective treatment for Alzheimer’s no later than 2025, but hopefully much, much sooner.  
Copyright © June 2015 by L.S. Fisher

Sunday, June 14, 2015

The Most Expensive Disease

Alzheimer’s is the most expensive disease in America. Our country faces an impending financial crisis. One out of every five dollars Medicare spends is for a person with dementia. This care amounted to $150 billion in Medicare and Medicaid expense last year.

The cost to Medicare for persons with dementia is three times higher than for seniors without the disease. The emotional impact on caregivers contributes to health issues for them. Caregivers pay an additional $9.7 billion for their own health care.

Dementia is costly to families. It strips away at the family finances. This is a disease fraught with unexpected expenses ranging from adult personal care products to hiring a sitter. Whether caring for a loved one at home or placing them into long-term care, families are hit emotionally and financially on a regular basis. It becomes a way of life.

When facing the dementia financial crisis, families sometimes sell possessions they would have never considered under normal circumstances. Jim and I sold our lake property. It had once been our intention to retire there, but retirement was never to be for us.

Recently, I read an article about Leon Lederman, 92, that really made me pause. Lederman, along with two other scientists, received the 1988 Nobel Prize for discovering a subatomic particle. He said it was just collecting dust. His wife mentioned a more practical reason for the sale. They faced financial uncertainty when Lederman was diagnosed with dementia, and the $756,000 they received for the pure gold medal made them more financially secure.

A gold medal doesn’t hold the sentimental value of a home. A story that made headlines in May of this year was about a former Japanese prisoner of war who needed 24-hour care after being diagnosed with dementia. This story could have taken place in the USA, and probably has. This particular article took place in Cornwall and affected ninety-four-year-old Charles Atkins. His family said the government was “throwing him on the scrapheap.”  The dilemma for the family was that unless he sold his home, his two daughters were responsible for his expensive care.

Can’t happen here, you say? Twenty-eight states have filial responsibility laws where adult children can be forced to provide necessities for their indigent parents, including long-term care. Most states don’t enforce these laws, yet. As the crunch becomes tighter for state assistance, they may begin to close their own financial gap. In most states, this involves civil court action, but twelve states impose criminal penalties and three states allow both civil and criminal.

Of course, if you are like me, you want the best care for your parents. Unfortunately, the enormous cost of nursing home care could force middle-class Americans into bankruptcy in a hurry. It’s a sticky situation, and if selling the family home gets you and Uncle Sam off the hook, it may seem the lesser evil.

Yes, Alzheimer’s is the most expensive disease in America, and it looks like it is only going to become five times more costly by 2050. This just puts the exclamation point behind the statement, “End Alzheimer’s now!” Without a cure for Alzheimer’s, the government and families are going to be faced with the unfaceable, the impossible, the unimaginable.

There is “Hope for Alzheimer’s.” Science is making great strides toward finding an effective treatment for Alzheimer’s and ultimately a cure. We need to keep pestering our legislators! If each of us helps in the fight to end Alzheimer’s through awareness, persistence, and downright refusing to give up, we can make a difference.  A big, life-changing difference. 

Copyright © June 2015 by L.S. Fisher

Friday, June 5, 2015

Alzheimer’s Awareness, Go Purple!

Purple is my favorite color, and coincidentally, it is the Alzheimer’s movement color too. June is Alzheimer’s and Brain Awareness Month and an ideal time to deck out in purple.

I signed the purple pledge and changed my Facebook profile photo to the “END ALZ” logo. The pledge is to wear purple gear on June 21, the Longest Day, and throughout the month of June.

The “Longest Day” ties well to Alzheimer’s. As any caregiver can attest, some days are not just long—they are endless. Alzheimer’s is an equal opportunity disease affecting people like you and me and creeping into the ranks of the famous.

It was interesting to see that the cast of  “The Big Bang Theory” have joined the fight against Alzheimer’s. Along with other well-known celebrities, they performed at “A Night at Sardi’s” to benefit Alzheimer’s. They were joined by Joey McIntyre, singer/songwriter and a member of New Kids on the Block. The fight is personal to Joey since his mother recently lost her battle with Alzheimer’s. He said, “Mourning is a process, and I have to take my time with it.”

Alzheimer’s can bring families together, and it can tear them apart. Or both. When Glen Campbell announced he had Alzheimer’s, his family was admired for the way they rallied around him. Due to his family’s support, Glen was able to perform well after he had the disease. Eventually, he wound up in long-term care. Now the family is at odds with his fourth and present wife, Kim. His children from previous marriages claim Kim Campbell has barred them from seeing their father, failing to provide Glenn with basic personal care items, and being financially irresponsible. Some of his children are trying to get a judge to appoint a guardian to protect his interests.

Often family members disagree on how to provide excellent care for the individual with Alzheimer’s. They fuss and fight, and before you know it, they become more focused on having their own way than what is really and truly the best resolution to their quandary.

The more you learn about the disease, the more likely you are to make good decisions. The primary care partner will experience a different level of stress and angst than the occasional visitor. Until you walk in their shoes, be very, very careful about criticizing. This isn’t to say that everyone is cut out to be a caregiver. Some aren’t. Unless you are willing and able to step in full-time, proceed with caution. As long as your loved one is not in danger or neglected, be supportive. Be a part of the solution instead of adding to the problems.   

Share your stories, your experiences, and show your support for caregivers and people with the disease. Create awareness with the color purple!

My goal is to wear purple every day in June. This is an easy goal for me since I have a wardrobe rich in purple, even without considering all the purple walk shirts I’ve accumulated over the years. Just in case I get up and forget to don my Alzheimer’s gear, my fingernails and toenails are both polished purple. My toenails have the addition of a layer of sparkle.

Sparkle on the nails makes them look darned cool, but it is a real chore to remove it. That’s when I have to drag out the super-duper polish remover pads and sometimes finish with a bottle of remover. If only we could remove Alzheimer’s from the face of the earth as if it were a thin layer of polish!

We want to turn the world purple in support of the 47 million people worldwide who are living with dementia. By being an advocate, a supporter, and raising awareness, the brain you save may be your own. GoPurple and #ENDALZ—not just for June, but for a lifetime.

 Copyright © June 2015 by L.S. Fisher

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