Lessons from Grandpa, loving a person with Alzheimer’s

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By Jason W. Wiley, MGS

Glen(Jr)Carr OxfordGlenPicChief Operating Officer, Oxford Senior Living

People, who know me, know that my Grandpa Glen is a big part of why I founded Oxford Senior Living. Glen (Jr.) Carr enriched the lives of every person he met through his wit, his work ethic and his generosity. He was a WWII veteran, a postal worker and a farmer who was dedicated to his family and his community. He also had Alzheimer’s disease.

My love of seniors and my love of my Grandpa led me to study Alzheimer’s and pursue a career in senior care. I am not a doctor, but as a social gerontologist, I’ve come to better understand how the disease impacted my grandfather and how it impacts millions every day.

Here are a few of the lessons I think Grandpa Glen would have wanted his family to know about his disease if he could have told us.

  1. “Embrace my reality.” A person with Alzheimer’s may have forgotten significant life events like the death of a spouse, but if we repeatedly correct them and remind them that Dad died, we create anxiety and grief. However, if we step into their reality and prompt them to talk to us and tell us stories without correcting them, we gain a new perspective and become a part of their life today.
  2. “Don’t treat me like a child.”An elderly person with dementia does not turn into a child, and they do not want to be treated like a child any more than your or I do. Remember the person they were before dementia. At Oxford Senior Living we believe understanding who they were before dementia is the path to understanding how to genuinely care for them now. If dad was a rancher all his life, look for ways to talk to him about life on the ranch.
  3. “I still enjoy doing things I always have. My abilities have changed.” If Mom always loved baking pies, she may not be able to safely slice apples for an apple pie and put the prepared pie in a hot oven. But that doesn’t mean she can’t help teach us how to bake the perfect apple pie. She just needs our help, and we gain valuable bonding time when we bake the pie together, asking for her advice and giving her tasks that she can complete safely.
  4. “Have patience with me if I struggle to find my words.” When disease ravages your brain, some words may seem out of reach no matter how hard you try to find them. Frustration and anxiety can creep in. When we sit patiently, smiling and helping to complete Dad’s train of thought, his anxiety is lessened and we both are communicating together.
  1. “Drastic changes in my behavior and what I say is the result of my failing brain. I’m not being lazy or trying to hurt you.” Alzheimer’s disease can cause both physical and emotional outbursts because of its physical impact on the brain. Remember who Dad was before Alzheimer’s disease. If Dad starts saying things that are socially inappropriate, realize that the part of his brain that helps him filter what is socially acceptable has been compromised. He may say, “You look fat in that outfit”… because he has lost the filter in his brain that would keep you or I from saying that.
  2. “Despite changes in my abilities, I am still very much the person I have been. I still want to have purpose, to be useful, to be needed.”We sometimes want to care for others by doing things for them, but if we do everything for them they will never feel the sense of accomplishment that comes with completing a project or helping others. A person with dementia may not be able to do the same purposeful things they did when they were younger, but that doesn’t mean you can’t give them opportunities to contribute. Dad may feel a sense of pride if you ask him to help you sort a pile of nuts and bolts that have been mixed.
  3. “If my words fail me, know that I can still hear. Don’t talk about me as if I am not in the room. Behavior may be my only way to communicate. Understand that.” Mothers of babies come to recognize the different cries of their children. You learn the difference between a hungry cry and a tired cry or a cry in pain. That is an example of how we learn to interpret the behaviors of someone we love. We can learn to interpret the behaviors of people with dementia as well. We just have to take the time to learn how Mom is trying to communicate.
  4. “Take care of yourself. I need you.” Caregivers often overlook their own health because they are so focused on their loved ones. National statistics show caregivers have a higher level of physical stress, increased risk of heart disease and diminished immune response. But if you are a caregiver your loved one with dementia depends on you, so this is one area when we should listen to the advice of our flight attendants and always secure our own oxygen mask first. See a doctor regularly. Schedule respite care for your loved one so that you can take breaks. And join a support group to share stories with others in similar situations.
  5. “Don’t beat yourself up if you can’t be my caregiver 24/7. I know that you’re doing the best that you can, and I appreciate you for it even if I can’t show it.” At some point it may not be financially or physically possible for you to care for Mom at home. In-home caregivers can help, but when it’s time for 24/7 care, it may be in everyone’s best interest for your loved one with Alzheimer’s to live in a memory care community with staff trained to understand dementia care and to keep mom physically and mentally stimulated. Moving Mom into a memory care community may help you restore your loving role as daughter. Your regular visits can become mother/daughter bonding time again.
  6. “Know that I am still the person you love and who loves you and sometimes all it takes is a smile and hug to remind us both of that.” 

Oxford Senior Living operates Oxford Glen Memory Care communities in Sachse, Grand Prairie and Carrollton with The Oxford Grand Assisted Living and Memory Care in McKinney. Find a community near you at www.OxfordSeniorLiving.com.

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