Interview: Kim Campbell on Caring for Glen Campbell and “I’ll Be Me”

Interview: Kim Campbell on Caring for Glen Campbell and “I’ll Be Me”

Posted on September 4, 2015 at 12:07 pm

Glen Campbell…I’ll Be Me is a beautiful documentary about an ugly disease. Glen Campbell, one of the most popular and successful musical performers of all time, was diagnosed with Alzheimer’s disease in 2011. As memories, words, and some basic concepts about daily life became fragile and then disappeared entirely, the music stayed with him. And so, his family took him on one last performing tour. The audiences were understanding, applauding even when he forgot the words or repeated a song he had just played. But backed up by his children, he played brilliantly and he loved the audience and they loved him back. The documentary is the story of that tour, of how Alzheimer’s affected Campbell and his family, and, with commentary by friends and fellow musicians, about how all of our lives are touched by the tragedy of dementia and cognitive impairment.

Campbell’s wife Kim is in every way the heart of the film. Her loving spirit and devotion are deeply moving. It was a pleasure to speak to Kim about the film, which is Glen Campbell…I’ll Be Menow available on DVD.

What has it been like for you to see how audiences respond to this film?

It’s been amazing. Everywhere we go and show the film people are really moved. They feel like we’re telling their story and they feel like it’s bringing Alzheimer’s out of the shadows into the light and helping remove the stigma of this disease.

What is it about music that seems to be able to reach people with dementia even when words are failing?

From what the doctors told us, music involves all the different regions of your brain at the same time and everything is stimulated at once. It just seem to promote the health of the brain, to keep everything working. They say that it may have kept Glen from progressing as quickly as he otherwise might have had he not been playing music. It’s a natural memory aid. People have used music to memorize things for years, for centuries. I think when you hear songs from your past on the radio or something you remember everything, you remember where you were when you heard it and the smell of the ocean and colors and what you were wearing and it just seem to trigger everything to do with your memory for some reason. And it brings joy to people. And joy of course brings a sense of well-being. So it’s a good therapy for people. I think all the arts are. There is a video clip of Glen relating to color and singing while he is painting and it’s really beautiful. So I am a big advocate of all of the arts for people with dementia. Really for everybody, for caregivers too. The art is therapeutic.

How is Glen doing now?

In March of 2014 our family joined the Memory Support Community in Nashville and Glen began residing there but recently about a month ago I brought Glen back home so now I’m caring for him at home again. And it is extremely challenging, he’s at the point where he just need one-on-one care round-the-clock. And it’s such a joy to have him back, emotionally it’s much better for me but physically it’s really challenging, I don’t get much sleep. He still has moments when he can become combative. I’m sporting a black eye this week that I got just trying to change his pants. You know that’s a part of Alzheimer’s that people generally don’t talk about. Your desire is to protect someone’s dignity but I really don’t think it has anything to do with dignity; it’s a disease. And this is typical for all people who have Alzheimer’s. They can’t express themselves verbally anymore and they don’t understand what’s going on, if you are trying to bathe them or take their clothes off or something their natural instinct is to lash out. So it’s just something that you don’t talk about that I think needs to be out there so that people can understand the tremendous challenges it is to be a caregiver for someone who has dementia.

So what are you doing to try and takes care of yourself? You can’t take care of him unless you are in pretty good shape.

Well, I pray a lot and I’m so blessed to have our daughter Ashley and our son Shannon and our nephew, Matthew. They’ve all been a part of our care team for so many years and they’re still living at home with me and helping. So I have got family and friends around, so that’s really important because you don’t want to become isolated. So many people are isolated in a home with someone with Alzheimer’s and they don’t have any help or the moral support of having somebody else there to help you. But I exercise, I take ballet, and that’s very therapeutic for me. I think it’s really important to raise awareness about Alzheimer’s and educate people about Alzheimer’s and so I’m doing that. I recently did a real estate course to get my mind off of Alzheimer’s and learn something new because I am aging, too. I am 57 and for my brain health I need to keep learning. So that was really fun. And it helps to meet people that are going to the same thing that I am. I’ve met a lot of women around the country who have husbands that have Alzheimer’s. I think it’s really different thing to have a spouse with Alzheimer’s than with a parent who has Alzheimer’s, emotionally different and so to have those friends has really been a great support to me. And I don’t belong to formal support group but I believe that those are really important and people should seek those out in their communities. I’m just blessed that it kind of happened organically with me to meet people in the same situation around the country and connect with them we stay in touch and visit each other and talk on the phone about what we are going through. And I try to eat right, too, all the natural things.

The film really makes clear that while people with Alzheimer’s and their caregivers have a lot in common, there are some very big differences.

Right. The thing is if you see one person with Alzheimer’s you’ve seen one person with Alzheimer’s. It’s different for everybody but at the same time it’s similar for everybody. There are standard things that people generally go through. Not everybody becomes combative but many do. Not everybody goes through retrogenesis but many do. Glen hasn’t really regressed and started becoming a child but there are childlike things that he began to do like his fascination with color. That is kind of beautiful actually because the way they begin to look at the world is like a brand-new life. Glen would look at the sunset and just get so emotional about it, “That’s the most beautiful thing I’ve ever seen!” So you try to find beauty and joy in the obvious tragedy. It’s your brain dying and you’re losing your memory but there’s still beauty to be found and Glen still seem to recognize me and we love each other and hug each other and still there are moments when we really connect deeply, when we look into each other’s eyes. And for the longest time Glen still would say things like, “We are so blessed!” Or he would go over to the window and raise his hand and say, “Thank you heavenly father!”

So I knew that he still senses God’s presence and we’re still connected to God and that really gave me a lot of comfort. Now he has really progressed with his dysplasia so his ability to communicate verbally has diminished severely. He doesn’t understand anything anyone says to him but we still communicate with smiles and hugs. At least it’s so funny because he still has his personality to some extent that he’s always been an entertainer, and so even now he’s still telling you jokes. It may not make sense, the words don’t really relate to each other but he is telling a joke so he laughs and laughs and laughs hysterically which makes us laugh and that makes him happy. So we try to appreciate each day for what it is and we just love each other and try to make the best of a bad situation. What can you do?

Tell me about some of the support activities you are working on.

We’re also excited that the I’ll Be Me Alzheimer’s Fund will create programs that will lift the spirit of caregivers and also fund research. What we want to do is give an award to young scientists, give grant to somebody like gave Mayo Clinic or a place like Johns Hopkins to hire a young scientists and involve them in Alzheimer’s research because generally scientists doesn’t get involved in research until they are older. It’s really exciting. There are lots of great companies working as hard as they can to find their drug or therapies are hopefully a cure. So we’re hoping that that is going to speed up the process.

If somebody came to you and said, “We’ve just got the diagnosis and I don’t know where to turn,” what would be your first piece of advice?

You have to educate yourself. That’s the first thing and the Alzheimer’s Association is really helpful. That’s where I went to start learn about the disease and learn what kind of resources there are available to you. You have to build a support team around yourself. It’s important for the person who has Alzheimer’s to have that support and the caregiver needs support. You can’t do it on your own — it takes a team. I would advise them to not let it get you down, do what Glen did and keep living your life and not worry about it. Don’t worry about tomorrow. Jesus said, “Don’t worry about tomorrow, it has enough worries of its own.” And a cheerful heart is like a good medicine so keep yourself a healer, keep living your life. Educate yourself and surround with people that you love and who will support you. And be honest with people, because when you are honest with people and let them know what you’re going through that gives them permission to step in and help, it helps to remove the fear. I think people are afraid, “I don’t know how to relate to someone Alzheimer’s” and they just stop coming around because they are afraid that they will say the wrong thing. But if you talk openly about it, it helps them feel a bit more comfortable with you. And then you’ve got more support.

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Documentary Illness, Medicine, and Health Care Interview

Interview: BerNadette Stanis of “Good Times” and Gospel Musical Behind the Pulpit

Posted on February 18, 2013 at 3:59 pm

It was very exciting, as a long-time fan of “Good Times,” to get a chance to interview BerNadette Stanis, who played Thelma.  She was a teenager herself when she was given the role.  She made me feel like an old friend and it was a lot of fun to talk to her about going from living in the projects to starring in a hit television series about a family living in the projects, about meeting classic movie stars Mae West and Loretta Young, what she learned from her TV mom, Esther Rolle, being a caretaker for her own mother with Alzheimers, and her current role in the gospel musical “Behind the Pulpit.” To see the tour schedule and buy tickets, check here.  To bring them to your church, contact them here.

Tell me about the play.

I play Deborah, the first lady of the church. And my husband the pastor is so involved in this church that he’s forgetting about his family. And his son. And so we have those issues in the church and all the little stuff that’s going on. It’s a real fun play. It’s a very good play.  Lots of singing. You know the gospel thing.  Those gospel people can sing, baby. I can do the acting and they can do the singing.

And what do you hear from the fans of the play? How do people respond to it?

They really like it. They are intrigued and they are astonished by what it says. Because my son in the play is gay. And I love him. He’s my only child. I love him to death. He can do no wrong. And his father is not having it. So you have that going on. And being a pastor. And how does he tell his church members my son is gay. So he doesn’t go along with it. And gives the boy a hard time.

That’s very difficult.  What do you hope people will take away from the play?

Well what I would hope that they take away from the play is that sometimes our children are not what we want them to be or they don’t turn out  the way we think they should turn out because it reflects badly on us because were pastors or were doctors or were whatever. But it doesn’t happen for them and we have to learn to embrace them as human beings and love them as their parents. Even though they are going through things they still need our love.  And if they feel they don’t have the love and they are going through stuff sometimes it becomes overwhelming. And they can’t handle it.  Pastors do have a lot on their shoulders because they are obligated by God to lead in the right way according to bible. Then you have these things that may come up, you have a child that’s wayward, you may have a child that’s gay, what are you going to do with that? I think Jesus would love them anyway.

We all deal with that work/life balance.  You have to deal with that work/life balance. You’re a mom.

My mom passed in 2011 from Alzheimer’s. I had been a caregiver for 8 years. So I was caregiving and promoting a book at the same time. I had written a book in ’06. She came to live with me in ’06. And I had a ten year old daughter at the time. She’s 18 now. But I’m just saying that was living the sandwich life. It was like balancing mom and balancing my little 10 year old and balancing trying to get out to promote my book. Thank God my husband was there to help me but still. It was difficult.

And it’s hard for kids to understand because they want 100% of your time.

That’s right. That’s it. So my mom came, it was like “I don’t understand that. You’re taking all my mom’s attention.” So we had to deal with that. Yeah, there was a lot of dynamics going on with that disease.

It’s wonderful that you were able to care for her.

To the end.

I’m sure that was a great comfort to her.

Yes. And she always wanted to live with me anyway. And I’m writing a book on the last night. The last night we spend together and that’s going to be for the Alzheimer’s community. I’m going to be doing a lot for them to educate the African American community on this disease. And I have an organization I put together for my mother, Remembering the Good Times. Nonprofit. Yes, remembering the good times. That’s what I’m doing for her.

What do you think families can do to be more supportive of care givers?

A lot of times when this particular disease hits a family a lot of people don’t understand the disease so they think if you forget a few things that you are no good. You’re not mommy anymore. And they hurt them so they walk away. And I would say that with something like this just understand why they want to hold on instead of putting them in a home.  Let them live a quality life even though they are going through this disease.  Know they are loved. And support your family members that are trying to hold on.

Tell me about your books.

I have a book called Situations 101.  Its about the good, the bad and the ugly in relationships. 101 different situations and my responses to them. It’s a funny book. Everything in there is real. I have heard those stories from someone. And then I have another book called Situations 101: Finances. The good, the bad and the ugly and the basics. In everyday terms. Because a lot of times people don’t really quite understand it. You read the financial books and I mean for me I was reading the financial books and really, really trying and I would go to sleep. My brain would just shut down.  I have a book called For Men Only and another Secrets from the Soul of a Woman in Love.  And I’m writing one with my daughter. She’s 18 now and it’s Situations 101: Teenagers. You wouldn’t believe what teenagers go through. She tells me everything in school. There’s enough stories right there. And it’s different stories with different children. And some children have multiple stories. And how do they handle it. So a lot of her friends come to me and ask me things. And I help them as much as I can.

You got famous very young.

That wasn’t a problem. My mother was there. My parents were very supportive. It was beauty pageant that actually got me that opportunity.  That was very interesting because it was like coming out of the projects going into the projects. I’m glad they picked me. That was a wonderful time in my life.

What was the audition process? 

Well I think they auditioned every black young actress in America. I remember when I went up to CBS. I was in a beauty pageant and the manager came over to my mother and said were looking for a teenage daughter for a television show. That’s how we got in there. So we went up to CBS and the room was packed — you’re talking about a cattle call. I thought I was the only one. I thought, “Oh my God, look at all these people,” and then I saw some famous people there. And I’m like “Oh no, I’m not going to get this. Get out of here.” I was just so excited to be there. And then they called me into the room with Norman Lear and Jimmy Walker because Jimmy was already picked. And Norman was the producer of “Maude” and “All in the Family.” And he’s a very interesting man. He loves comedy. He knows comedy. So were sitting there and I get the script. The script was a little stiff to me. To me. The expert.  So I’m like, “Can I improvise and do like I do at home with my brothers?” He’s like, “Go ahead. Just do something.” So I auditioned and I went up to Jimmy and I said something to him and he was like ignoring me and I just gave him a push. You know how you push your brothers and he went “What!” And we went back and forth and Norman loved that. So I think that won me over.

What kind of reaction did you get from the fans?

It was nothing like it is today because you see back then they had to write letters. We got lots of letters but now you get email and Facebook and all of that has changed.  I couldn’t communicate with them like I can today. But they loved me and I really felt the love when I went out for my book promotions in ’06.  30 something years later.

That show seems to have really connected to people. I think because it was such a strong family.

And it was written with real issues. It wasn’t necessarily written like we were just black people. We were people going through issues. Now there were some situations that pertained to blacks like hypertension, high blood pressure, that we were going through and we addressed that. And I loved the way they wrote that.  The show went into a lot of different dynamics and when I was thinking about it as an adult. They had the mother and father at one point. There’s a family with the mother and father and then the father was gone and then you had the mother supporting the children and you had a step father come in. then the mother went away and it was just the children and an aunt. Willona. So we adopted a kid.

Janet Jackson!  You had a chance to work with some really fine older actors. What were some of the things they taught you?

They taught me about being professional. And taking your craft seriously. And learning your lines and being real with your character and I learned about discipline in the work place and because I didn’t have that. I was late all the time. And Esther fixed me real good.

Did she? What’d she say?

She fixed me real good. She would pick me up around where I lived and we would go to work together and so I was always late. And she said, “BerNadette, I don’t like being late and if you’re late, I’m late.” I was supposed to be on the corner waiting for her at 9 o’clock. “And if you’re late tomorrow I’m going to leave you.” I started laughing. “Mom, you know you’re not going to leave me, stop it.”  So she said “Hmmm.” And so this day I was late. I was trying to really get there on time I still was late.  And I got downstairs and there was no car. So I said, “Maybe she’s late.” I stood there for about 10 minutes and I realized she left me. She really left me. Oh, my God. And you can’t get a cab in California. So it took me like  two hours to get the cab and it cost me about 30 bucks. It was like a mess. When I got there I had a little attitude. I got up there and she said, “Hmmmm,” and I couldn’t even get mad because she was right. But you know I got mad anyway and she said, “Don’t be late.” It was a hard lesson but I learned it.

What do you get from live performance that is different being on television?

Live performance is you’re right there.  You don’t know what’s going to happen. You know your lines but each night it’s different. And that’s what I like about it because when I do my scenes with Terrell, the one who plays the pastor, he’s so good and he flows with me well and when I come out and he’ll say something it’s so real. And that’s what I enjoy, having an actor that has good chemistry. So you can enjoy your work. So that’s what I love about that.  But as far as television is concerned it gets way out there and everybody sees it in one little spot. So if you want your popularity to be there, television is it. But if you want to hone in on your craft, the stage is it.

And what books do you like to read?

You know I like to read autobiographies in fact I’m reading Mae West’s.  She was way ahead of her time and you know I was reading about her is that her mom raised her basically to think like a man. Not to be a man, just to think like one because her mother wanted to be a star and was married and back in those days, she was born in 1997 or something. So you can imagine. Her mother was stuck with three kids and a husband and she couldn’t make it.  But she saw this pretty little girl she had and she adored her and just let her just blossom and she put everything into her. And didn’t teach her the way you would teach a girl. Don’t do this. You can’t do that. It wouldn’t be lady like. Her mother just let her go. And she did the opposite.  And she didn’t let anybody stop her from being who she was.

And I had an opportunity to meet her. Because Herb Kenwith was our first director on Good Times. And he was one of her best friends and he’s in the book. So Herb came to me when we first started the show. Like the second season and he said were going to the CBS dinner and “Ms. Mae West would like to meet you.”

So I met her at the escalator and we walked in and we sat at the dinner table and everything but she wouldn’t speak but now that I’m reading the book I realize she didn’t speak much, she was studying people.  And so I sat with her and everything for a while. But she didn’t speak much and I didn’t know what to say. So I just drifted off into my friends.

And I got to meet Loretta Young.  You want to know what she said to me.  She asked me to pray for her.

When did you decide that you wanted to act?

When I was a very young teen.  I had a class and I improvised something and the teacher thought I was very good. I was a dancer so I would interpret dancing in an acting way.  You know what I mean I would put music on and I would act it out in dancing. So I was always acting and that’s what I did. Interpretive dance, modern jazz, and I was always doing things like that so acting came kind of natural.

And your parents were supportive of that?

Oh yeah. I can remember this is so interesting now that I  have teenagers you know we were living in a two bedroom apartment in the  projects and you have the living room and you have the little bedroom and I would get up on Saturday or whatever day and I would play my music, no one ever stopped me. And I would play it loud. My mother never said turns it down. And I would play the song over and over. And she just let me do that. Now that I think about it that’s pretty incredible.

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