Coping with Alzheimer’s Disease with Wisdom, Compassion, Humility & Art

Perhaps no disease strikes more fear in the hearts of the healthy than Alzheimer’s. While robbing individuals of their ability to think and remember, Alzheimer’s can also compromise the mental and physical health of loved ones and caregivers, while draining away savings and eroding financial security. The disease has no cure, and when it strikes, medications offer only modest returns.

On Friday, September 27, the Memory Disorders Center at the University of Cincinnati Neuroscience Institute, one of four institutes of the UC College of Medicine and UC Health, will take a step forward in the direction of new hope and increased opportunities for patients from the Cincinnati area to participate in clinical trials that test promising new treatments. The Forget-Me-Not Gala, which will support clinical research in Alzheimer’s at the UC Memory Disorders Center, will begin at 6:30 p.m. at the Phoenix in downtown Cincinnati.

As we prepared for this event, we asked experts and friends of the UC Memory Disorders Center to share their best advice for families who are coping with Alzheimer’s disease in a loved one.

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“I always tell patients and caregivers that the most important issue is quality of life.  The goal is to give loved ones with cognitive issues as much independence as possible but to keep them as safe as possible as well.  In addition to making sure that there is supervision for medications and finances, taking measures to prevent falls in the home is also very important.  Because sleep issues are common, keeping a daily routine and social interaction during the daytime hours also may make improve the ability for their loved ones to fall asleep and stay asleep at night. Focusing on the activities that soothe the spirit, including music, art, and/or prayer may help everyone cope with the journey ahead.”
Jennifer Rose Molano, MD
UC Health Neurologist
Sleep Specialist, UC Memory Disorders Center

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“Do not go it alone. As the disease progresses, caregiving only gets harder. Take care of your own health requirements, including doctors’ visits, dental visits and physical exercise. Take care of your own social, emotional and spiritual needs as well. Caregivers who have their own needs met are in a better position to provide a supportive environment in which the loved one can function. Recruit friends, family, church members and neighbors to help you. Use your resources. Contact the Alzheimer’s Association http://www.alz.org/cincinnati/ and investigate your options. Eventually, every individual with a neurodegenerative disorder will require professional care.”
Robin Bratt, RN, MSN, NP-C
Nurse Practitioner, UC Memory Disorders Center

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“I encourage caregivers to play old videos and show photos of dear ones to their affected family members and create memory games with them. Ask your loved one, ‘Where was this picture taken? Do you remember the event where Mary sang? Where were we when I bought this silly new hat?’ Use the same batch of videos or photos for ‘re-testing’ a week or two later. While memory is compromised, remote memories are eroded to a lesser extent. Putting them in ‘new’ contexts can make these ‘old memories’ stimulate new ones.”
Alberto Espay, MD
UC Health Neurologist
Research Director, Gardner Family Center for Parkinson’s Disease and Movement Disorders

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“My mother-in-law has a wonderfully supportive husband and family as she has gradually lost her ability to talk and remember. However, one of the amazing things has been her enjoyment of drawing and artwork – something she hadn’t done as much in the past. She constantly hums a song that none of us can place, but it has a happy quality. It is almost as though the disease has freed up the creative areas of her brain that are still working.  Art and music can be keys to the spirit even while words and memories fail.”
Joe Broderick, MD
UC Health Neurologist
Chair, Department of Neurology, and Co-Director, UC Neuroscience Institute

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“In 2005 my wife Rosemary was diagnosed with Alzheimer’s disease, and we made that journey together with prayers but with NO HOPE. Here was a woman who had been a registered nurse, a railroad stewardess, a graduate student, an owner of one the tri-state’s most popular restaurants (Terwilliger’s), a wine writer for the Cincinnati Post, a wine merchant, a world traveler, a loving mother of two and the wife of a loving and devoted husband for 54 years who was now cast into the great unknown abyss of Alzheimer’s. The Alzheimer’s journey from 2005 until her passing in 2012 was a slow, agonizing process that was filled with terror because there was NO HOPE. However, it was softened by the love and tenderness of many friends and family and a church that mobilized unbelievable assistance. Six months before Rosemary’s passing, her neurologist looked me in the eye and said: ‘John, you must remember that the caregiver often dies before the one he is caring for.’ Today, we know definitively that Alzheimer’s has a dramatic negative on caregivers.”
John Van Kirk, PhD
Founder, The Wine Merchant
Founder, Forget-Me-Not Gala

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“My mother-in-law has Alzheimer’s, and although in my opinion her decline has been steady over the years, it has become more pronounced mentally and physically since her husband’s passing two years ago. She remembers events from the past with crystal clear clarity but struggles with events that happened weeks, days or minutes ago. She loves to look at pictures and looks at them over and over. What we have done is to fill her room with pictures of her family and give her lots of albums to look through whenever she likes. It seems to help her memory, and she really enjoys looking at her grandkids. When my children enter her room she lights up and becomes a kid herself. She delights in their laughter and energy, and I really feel that it lifts her spirits. We also often remind her who her family is: ‘This is your grandson, this is your son’s wife, this is where we live.’ Although at times it seems like a futile exercise, there are moments of clarity when I know she understands and comprehends what we’re saying because she will say it back to me or remember the conversation …  She didn’t choose this disease, and it’s heartbreaking to see someone you care for be scared or confused. So I always remember to be patient with her, to make her laugh because she loves to laugh, and to remind her that she has a family that loves her and will take care of her.”
Erica Camp
Forget-Me-Not Gala Committee Member

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“My dad was diagnosed with Alzheimer’s, and my mother assumed the role of caregiver. My sisters and I knew it was a struggle for mom, especially since we all lived many miles from home.  We traveled home to give relief as we could, but it obviously was not enough. My mother had been coping for 10 years when I received a wake-up call from her—she had felt ill, had driven 15 miles to the doctor and was admitted to the hospital with a serious heart attack. Thus began our journey as caregivers … Caregivers require care themselves but seldom recognize their own needs until they have a personal crisis.  Caregivers dealing with Alzheimer’s disease should be made aware from first diagnosis of the many wonderful community resources available, no matter where they may live.  Friends and family members also can provide much support by offering respite care for a half day, by making a meal or treat now and then and by sending a note or making a friendly phone call.”
Mary Newman
Forget-Me-Not Gala Committee Member

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