Special Screening Event
"Glen Campbell: I'll Be Me"
June 11, 2015
Part II: The Panel Discussion
Continuing my post about the special “I’ll Be Me” event at UMBC that I attended, I am happy to share highlights from the panel discussion that preceded the screening of Glen’s documentary. I have paraphrased some of the discussion and also provided quotations.
To re-cap, the panel discussion was led by Jackie Harris, President and CEO of Integ
race. The panel participants included:
Cass Naugle, Executive Director, Alzheimer’s Association Greater Maryland Chapter
Dr. Nicole Absar, Medical Director, Copper Ridge Outpatient Assessment Clinic
(pictured left to right below
Dr. Absar discussed the importance of determining the point at which we need to find out what is happening with a person who appears to have symptoms of Alzheimer’s disease. It is critical to find out what type of memory issue the person is experiencing. Is it a memory issue due to Alzheimer’s or is it a memory issue due to a sleep disorder or another disorder that might be treatable? For example, depression can mimic dementia; therefore, evaluation and assessment would be needed to determine if symptoms are caused by depression and not Alzheimer’s disease.
Furthermore, it is important to understand that memory loss may not be the first (or obvious) symptom of Alzheimer’s disease. For example, are personality changes evident? Or other changes?
Dr. Absar: “We are concerned about forgetfulness when it becomes consistent and unlike (that person) before (these symptoms became evident). We are underdiagnosing Alzheimer’s because there are other criteria – a person’s memory does not have to be bad; other things can be present that still indicate that this person has Alz’s. This is when we need to seek help. Early diagnosis is very crucial.”
Jackie Harris asked Ashley Campbell: “I have gotten to know you over the last year – you have such a positive outlook. How do you continue to remain so positive as you watch your father go through this disease process?”
Ashley: “I have always tried to look at it as: it’s not about me, it is about him. I have a job to do and that job is making his transitions easier for him and making him feel comfortable and safe. This definitely helps to keep my mind off of any kind of sadness that I am going through…I am very sad. But you know, when you have a job to do, it is a lot easier to manage that sadness. So, I just try to keep the focus on my Dad because I don’t have Alzheimer’s, and so it is not about me, it is about him.”
Jackie asked Kim Campbell: “I have also had the opportunity to get to know you over this past year and to watch you on this journey that you are taking with Glen, handling it with such grace and love and, oftentimes, … with humor. How have you taken care of your health needs with the stress of being a caregiver?”
Kim: “There definitely is a lot of stress to being a caregiver, and there are many times, many days, nights that it does get you down, and it is crushing. Sometimes the depression is debilitating…but like Ashley said, I do have to take care of myself to take care of Glen, he is the one who needs help.
I have been blessed to have a support system:
--Our children have been there for us, not … just to take care of Glen but to take care of me; they give me the breaks that I need.
--Friends. In the film, you will see a friend we call the “golf angel” who, when we were in Malibu, which is where we lived, would come and get Glen every day and take him to play golf. That gave me a really good break to do some things for myself like (taking) a ballet class or having lunch with a friend. You need to stay connected to other people, your friends, your life; connect with who you are because caregivers often (tend to) isolate themselves. They feel like they need to stay home and take care of their loved one. … We tried to just keep living our lives and just being who we were as long as we could. Surround yourself with friends.
--I have to say it is mostly my faith in God. I prayed a lot, and I just trusted that we are on this journey for a reason and that He would give us strength to face each day.
--And then the love that Glen and I have for each other. Also, the love we have as a family. Love, faith, friends, that’s what it is all about.”
Jackie asked Cass Naugle for three recommendations for caregivers. Cass suggested:
“Learn everything you can about the disease. You do not need to do this alone.
Develop a network of support.
Learn how to accept change and the next phase. Learn what you can do, so you can plan ahead as a caregiver.”
Cass added, “It is hard to go out there and talk to people about what this (Alzheimer‘s) is…it is so hard to explain.”
Jackie asked Kim: “Was it difficult for you, as a family, to do that (go out there and talk to people about Alz’s)? You were a vibrant family out in the public’s eye, and then this (diagnosis) happened. How difficult was that? How did you handle it?”
Kim: “When we first received the diagnosis, I didn’t know anything about Alzheimer’s. The Alzheimer’s Association was one of the first websites I visited to educate myself. We let some of our friends know what was going on, and they started giving me books, and so I started reading (about the disease). I would share things I was learning with the kids and with our friends. We just began to equip ourselves with the knowledge we needed to keep Glen happy and content, to support his strengths, and to compensate for his weaknesses; to give him the support he needed to continue being who he was and doing what he loved.
It is a continual learning process because you go through so many different stages of this illness—and (the stages) … overlap, too. It is different for everybody. Alzheimer’s disease is really a strange disease to navigate but we just take each day as it comes. When you love somebody, you just do whatever it takes and roll with the punches. That is how we approached it.”
Dr. Absar then spoke about the availability of treatments for Alzheimer’s disease. She said that there are a few treatments—some of these treatments have mixed results on a phase two and a phase three level. Most of the research is focused on how to break down amyloid, how to clear it from the brain neurons. Research is also focused on finding out if there is any way of decreasing the production of amyloid.
Researchers are also looking at how to modify this disease, said Dr. Absar. By combining therapies, there is a better chance that the progression rate of the disease will slow down--better than when only one therapy or treatment is used.
The usage of Vitamin E is also being looked at again.
“We have a lot of promising new research coming,” said Dr. Absar. “However, the most important research is, like Kim and Ashley have said, family. How can we strengthen the skills of a person with Alzheimer’s disease, and how can we stimulate the person’s strengths? (This is important) because if we focus on the disability model, then what you lose, you lose. How can you focus on the strengths they have? (I’ll Be Me) is a film about strength. I am amazed by Kim and Ashley and her brothers: how wonderfully strong they were (in the film) and how they challenged the disease. (They showed) that mind matters. Mind power (helped Glen)."
Jackie then asked the audience: “How many people in this audience either have or know someone with Alzheimer’s or is caring for somebody that does have this disease?” (Most of the audience raised their hands.) In response to the show of hands, Jackie said, “This never changes. It doesn’t matter where we are and how we ask this question, it is almost everyone that is touched by Alzheimer’s in some way.”
Jackie asked Ashley: “What advice would you give to this group who all just raised their hands in regard to how you have managed in the way that you have?”
Ashley: “I think a lot of people look at Alzheimer’s and dementia as a journey because it is a progressive disease, there are steps, and you never know if it is going to be a quick decline or if it is going to be a long one. I would say, just get in the roller coaster cart next to (the person with Alzheimer’s), and put the bar down, and just be on the ride with them, experience it with them, and help them through everything they do.
I’ve always found this piece of caregiving advice very useful and that a lot of people ask me about it:
When they (a person with Alzheimer’s) are having trouble remembering something, just act like it is the first time. Don’t say that you just did this or you just ate or you just asked that question five times because that frustrates them, and it makes them feel like there is something wrong with them.
Don’t make them feel like there is something wrong with them—just focus on what is right and cherish every moment. Get to know them as who they are at that moment and don’t completely hold on to who they were. We are all changing as we go through life; we aren’t the same person we were when we were twenty (years old). … Just appreciate who they are at the moment.”
Jackie to Ashley: “You and your Mom have just been, and are, and continue to be such wonderful role models as caregivers, and I think that seeing that is very helpful.”
Jackie to the panelists: “As we close the panel, I want to do a couple of things. I want to thank the panel for being here, thank you for your insights and for your commitment to this work every day."
Jackie to Kim: “I can’t imagine anyone better to introduce this documentary (I’ll Be Me) than you. Could you say a few words to introduce the story for us?”
Kim: “Glen was diagnosed with NCI (cognitive impairment) in 2009. The doctor said that sometimes NCI changes into Alzheimer’s and sometimes it doesn’t. The doctor advised to bring him back (for evaluation) yearly. In 2011, Glen had just finished this beautiful album called ‘Ghost On The Canvas’, it got great reviews, we were all set to go out on this wonderful tour, our kids—we have three children together--had been playing in his band, so we were all excited about promoting this album, and then we got the diagnosis of Alzheimer’s disease. It was shocking. I knew that there was a possibility that that could happen, but I had hoped it wouldn’t. When we learned the diagnosis, we had to sit down with our team and discuss what do we do? Are we going to go out and do this tour? The doctor had told me that ‘if Glen is still functioning well and he enjoys (touring), I think it would be good for him.’ And Glen said, ‘I feel fine, I want to go out and do my tour!’ We discussed what if there are problems, what if you forget lyrics, chords, or have some difficulties (when performing)? Glen said, ‘I’ll just tell them I got Alzheimer’s!’ (big laugh from the audience) ‘No big deal’, he said. So, we said okay…. It was Glen’s decision to go public with the diagnosis.”
(Kim then described how Julian Raymond urged James Keach and Trevor Albert to meet the Campbell family because Julian believed that they were living a story that should be shared with others.)
“We were afraid of what the public would think, maybe they wouldn’t buy tickets to see Glen. However, our first show was sold out, standing room only! The crowds (of fans) came out to support him and love him and root for him. We didn’t realize how many families around the country were affected by Alzheimer’s, too. So, (the audiences) were really empathizing with our journey. What started out as five weeks turned into 151 shows. The documentary just started snowballing, we ended up going to Washington and lobbying, and we started feeling like we were making a difference. Also, we were learning and being educated ourselves, so it is an amazing journey. (The documentary) was a blessing to our family, it is funny and uplifting…. We are so proud of Glen for doing it.”
The audience warmly applauded the panelists, and then the screening of “Glen Campbell I’ll Be Me” took place.
(Scroll to Part I if you haven't already read about the audience’s reaction to the documentary and about Ashley’s musical tribute that followed the film screening.)
I wish all of you an opportunity to attend a special screening of “Glen Campbell: I’ll Be Me” to support Glen Campbell and his family, to support their film, and to support Alzheimer’s awareness. If you have attended a similar screening, I hope you will share your experience with us here on the forums!
Many thanks to the Erickson School at UMBC for contributing photos for this post and to all of the sponsors who made this event possible. --Dee
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