As part of our partnership with Maria Shriver, founder of The Women’s Alzheimer’s Movement™ and Move for Minds, we are spending time listening to the experiences of caregivers of those with Alzheimer’s and other dementias. Although we write frequently about the demands of caregiving, we find it compelling and deeply moving to hear about the experience directly from caregivers. They provide a window through which we can see the love, loyalty and deep commitment required to be a long-term caregiver for someone with a dementia. This interview is with Rick Lauber, author of The Successful Caregiver's Guide
, a son and caregiver to his father with Alzheimer’s disease.
Q: To start off with, what were some of the challenges you experienced in caregiving and how did you cope with the changes in your father?
“Early absentmindedness ...repeated questions and stories... unsteadiness while standing ... the complete loss of his mental faculties leading to an inability to recognize his own family (including me as his son), properly care for himself, and make crucial life and financial decisions. These were among the many issues I was challenged with when helping to care for my father after he was diagnosed with Alzheimer's disease.
I learned to cope with these changes in Dad by gently reminding, patiently listening and agreeing (you will never win an argument with a person with Alzheimer's ...), searching for Dad's lost/misplaced items personally to save time and frustration, utilizing outside help and support; and practicing self-care (by means of walking and writing)."
Q: How many hours per week did you spend actively caring for your father?
"With driving Dad to medical appointments, waiting in doctor's offices, handling his banking, learning what I could about Alzheimer's and the progression of this disease, making necessary phone calls, running other related errands, and visiting him, I would have spent an average of 25 - 30 hours per week serving as a caregiver for Dad. It should be noted that even on the few days when I had less to do for Dad, I rarely stopped thinking and/or worrying about him, so, therefore, caregiving was almost a constant for me."
Q: What has been the most challenging part of caring for a parent with dementia?
"There were many challenges. I patiently listened to Dad's repeated questions and stories. I calmed him when he forgot my mother's birthday and took him to a local shopping mall to buy a gift for her. I watched him hold a book upside down and try to read it. I helped to sort through and downsize his belongings. I helped to take away his car keys and sell his car when he was unable to drive. I became Dad's Joint Guardian and Alternate Trustee and had to make many decisions for him. I moved him repeatedly - including to a secured Alzheimer's unit and cried knowing that this would be his final home. I watched as Dad further declined and knew there was no cure yet for Alzheimer's disease. My biggest challenge likely was losing Dad twice - once when he completely forgot who I was and once again when he died."
Q: Have you ever experienced caregiver burnout? If so, how did it manifest and how did you overcome it?
"Caregiver burnout took various forms. Even on the few days when I had less to do for Dad, I rarely stopped thinking and/or worrying about him, so, therefore, caregiving was almost a constant for me. I was frequently tired. I lost concentration. I was less willing to participate in once-enjoyable activities and/or share the company of friends. I learned that taking respite caregiving breaks was crucial and could greatly benefit those helping and supporting aging loved ones. During those respite breaks, I walked, wrote, and spent time in local coffee shops simply reading the daily newspaper - taking time for me proved to be very effective."
Rick is not alone in his struggle to balance the challenging care of a loved one with dementia with the responsibilities of everyday life. Rick’s story highlights the need to increase funding for Alzheimer’s and dementia research. That is one reason why we have joined Maria Shriver’s movement as the exclusive caregiving partner. We want to help to increase awareness of dementia and Alzheimer’s disease and gather support for caregivers who work every day to care for their loved ones.
We encourage you to join us! The fight against Alzheimer’s Disease is going to take all of us. While we care for and comfort those suffering with the disease, we look to the day when a cure is found. Read more about Move for Minds and The Women’s Alzheimer’s Movement™. In honor of professional and family caregivers around the nation we’ve opened up applications for a respite care grant - Apply here!
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