By Jan Dougherty, MS, RN, FAAN, Family and Community Services Director, Banner Alzheimer’s Institute
Country legend Glen Campbell and his family openly share his life with Alzheimer’s disease (AD) in the recently released movie, “Glen Campbell… I’ll Be Me.” This movie is not only an honest portrayal of one person’s journey with Alzheimer’s disease, but the many challenges that a family must navigate over the course of this chronic illness. Outlined below are some important lessons this talented singer and his family teach us all when living with dementia.
Disclosure of the diagnosis – When Glen Campbell was diagnosed with AD in 2011, he and his family decided not to hide from it, but to go public and give this illness a face. His wife, Kim, wanted people to know that “this is not your grandmother’s Alzheimer’s disease.” Their honesty and courage to make this diagnosis public was received with love and warmth from family, friends, and fans. His dignity was essential in the disclosure and public appearances; and he used his fame to go before the US Congress in order to raise awareness and lobby for increased funding for Alzheimer’s research. Lesson learned: There is no shame in a diagnosis of Alzheimer’s disease/dementia. We don’t need to hide it from others. We may lose some friends along the way, but will also learn who our real friends are and benefit from their love and support.
Plan A, B, C… – Planning ahead is essential when living with AD, but imagine going on a national “good-bye” tour when living with memory loss. In the movie, we see his family, band members, bus driver, publicist and long- time friends always looking ahead and anticipating all of the things that could go wrong and then making plans to ensure that the performances could go as smoothly as possible. When one plan didn’t work, they quickly shifted to another plan to ensure success. Lesson learned: Family caregivers and friends must be flexible especially when routines are changing. For some, the changing nature of the day and its impact on memory and thinking, calls for different plans and strategies throughout the day. Travel is another example of when families must have multiple “what if” plans ready to go. Thinking through alternate plans is more likely to lead to success for the person with dementia and the family alike.
Build upon strengths – It is often easy to focus on losses in AD versus remaining strengths. The Campbell family built success on the singer’s remaining abilities and also used additional tools to bring success during his yearlong 2011-2012 farewell tour. While he is a gifted singer and guitar player, his family made sure he had a teleprompter to assist with remembering the lyrics; his daughter was there to help him get back on key; and he drew upon his strong social self in front of an audience to do what was so natural – perform! Yes, we see that Glen forget his lyrics at times or occasionally become confused; but we also witness his charm, humor, beautiful voice and unbelievable motor memory for playing the guitar. Lesson learned: Each person with dementia has remaining strengths and a sense of self. When we play to the person’s overlearned and innate abilities, we are still able to tap into the possibilities that often seem lost. When we witness the person “acting like they don’t have AD,” we see the beauty of that person’s spirit shining through and celebrate their sense of self.
Partners in care – Treating AD can be a challenge as each person is different and will respond to medical treatment in a different way. There is not a “cookbook” approach when using the four FDA approved treatments for AD (Aricept, Exelon, Razadyne and Namenda) which can provide modest benefit in slowing progression and managing symptoms. We learn in the film that Glen along with his wife routinely sees a dementia specialist to manage his ongoing care. At one point the physician increases one of the medications in hopes that it will benefit him; but in fact, there are some unwanted side effects that his wife quickly reports to the doctor. Lesson learned: It is essential to partner with a medical provider who listens carefully to the patient and caregiver and provides education and ongoing ideas and options for care, including clinical trials if appropriate.
Live in the moment – People living with AD suffer from significant short-term memory loss and subsequently “live in that moment” before the moment and its memories get lost. However, when family and friends can join that person in good moments, it can be joyful, fun, satisfying…a real gift. While those precious moments may be quickly lost by the person with AD, they still matter and create precious moments for those around them to treasure. We witness many beautiful moments as Glen Campbell’s adult children accompany him as part of his tour band and hear their thanks for being able to create such rich moments for them to remember for years to come. While Glen may quickly forget a performance, the family was able to enjoy the “now” of his presence and joy and remember these precious moments for years to come.
Create a care team – No one can go at this illness alone. The demands are too great and the length of the illness is much too long. Glen’s family demonstrates the power of a wonderful team that included family members, friends and paid staff. Each played an important role in his life providing support, friendship, supervision and hands on care. While each person’s network is different and may not have the wide array of players we saw in this situation, we must draw upon those around us and ask for their gift of time and presence. Lesson learned: We must ask family and friends for help and be clear and specific in the needs we have. We may get “no” for an answer but may be surprised with all the “yes” responses as well. And, we must all come to understand that we are likely to draw upon paid help at some point as we think about using Adult Day Health Care or companion care. There is no shame in asking for help – we need one another in this lifetime.
Transitioning care – As AD/dementia progresses, most families find that they needed added help either in or outside of the home. Even celebrities can succumb to a chronic illness and need care. We learn that Glen needed care beyond what his team of family, friends, and hired help could manage at home. Once again we learn some valuable lessons from Glen’s wife, Kim, as she did her homework and found a facility that would feel familiar and comfortable for him. She began by taking him to stay at the facility for the day and quickly learned that he adapted and was having fun with the staff. A short respite stay led to a longer respite stay and understanding that this new “home” could better meet his needs and keep him comfortable. While transitions can be difficult, they they can be successful when the person’s comfort guides us. Lesson learned: As dementia progresses, it is important to begin to explore options for in home care, Adult Day Health Care, and/or residential care. People with dementia can adapt to new people (caregivers) and surroundings. If/when transitions occur; they are more likely to be successful when careful planning takes place.
Perhaps beyond the legacy of Glen Campbell’s music, we can all be reminded of a bigger role he and his family played; that of our humanness, the love and compassion of family, friends and strangers; the ability to adapt in difficult times; and the ability to teach lessons in the most fragile of states. Thank you Campbell family for your transparency as you share your story.
Don’t miss “I’ll Be Me” screening at the Edmonds Center for the Arts April 18. The film screening will be followed by a mini-concert by Ashley and Shannon Campbell, Glen Campbell’s children. A portion of each ticket sold will be donated to the Alzheimer’s Association, Western & Central Washington chapter.