My once vibrant father, a retired astronomy professor with a Ph.D. in physics, hasn’t known night from day for more than three years now.
Gone is his knowledge of the earth’s rotation around the sun and why night is dark and daytime is light. Gone, too, is his memory of my name. To him, I’m a nice person who seems familiar, but I don’t believe he’s known that I’m his daughter for some time.
My dad has Alzheimer’s and has lived in a memory care facility for almost two and a half years. At first, my father didn’t believe he was ill and would become angry when he couldn’t do things he used to do. Today, he is very withdrawn and doesn’t speak much. When he does, it often doesn’t make sense. Some days he can feed himself; other days he can’t. Some days he isn’t sure how to stand up when seated in a chair.
I have been grieving the slow loss of a father whom I can still see, touch, and hug. Alzheimer’s is a process — for the person who has it and for their loved ones.
In the beginning, I asked the common questions: “Why him? Why us? How did this happen and how will we get through it?” Follow that with, “Will I get it too?” and the fear multiplies. But I knew I couldn’t let fear and grief run my life. I needed to find a way to accept what was happening so I could support both of my parents through what was to come.
Here are five mantras that have helped me cope with my father’s Alzheimer’s — I hope they can help others dealing with this disease or any other form of dementia.
1. Understand how confusing it can be for the person with Alzheimer’s.
One day, a woman in the medical facility stood up from a table and said to no one in particular, nearly in tears, “I don’t know what to do now.” There were no aides nearby so I went to help get her walker. She looked at me through her metal-rimmed glasses and said, “It’s like I’ve woken up on a different planet and I don’t know what to do!”
Her statement made a huge impact on my head and my heart — this is probably how many of the residents feel, but they just can’t find the words. As hard as it is to watch my father go through this mental and physical decline, I can’t imagine what it would feel like to “wake up on a different planet and not know what to do.”
2. Jump into his or her reality.
When my dad was first diagnosed, my family and I tried to prepare for what was to come. We read books and went to talks and meetings to learn from those who had been down this road before us. I remember someone advised us not to argue or try to reason with an Alzheimer’s patient but to “jump into his or her reality until it shifts.”
This didn’t make a lot of sense until I saw it in action. During another visit, a woman told me she needed to get home because her son would be home from school soon and couldn’t be alone. The son she was referring to was 55, but in her mind he was 8. I had seen people try to explain this to her, which only upset her more. Instead, I told her he was going to a friend’s house after school and would be fine. She looked confused at first but then said, “Ok!” and went back to working on a puzzle.
3. If you’ve met one person with Alzheimer’s, you’ve met one person with Alzheimer’s.
A doctor once told me, "If you’ve met one person with Alzheimer’s, you’ve met one person with Alzheimer’s." He went on to explain that each person’s experience and path is different, so learning every detail about your neighbor’s grandmother's decline won’t necessarily prepare you to deal with your own grandmother's decline. If a loved one gets a dementia and possible Alzheimer’s diagnosis, learn what you can but know that your experience will be unique.
4. See this disease as a reminder that you should never delay your life.
My father’s Alzheimer’s taught me that life can turn on a dime. Don’t wait until you retire or “until the timing is better” to take that trip or make that career change. I have done a lot of soul searching since my dad’s diagnosis. It’s led me to shift my work schedule to better align with my values, carve out more quality time with my husband, and encourage my college-age son to take advantage of all the opportunities he has at his disposal. “Enjoy and appreciate each day” is my new mantra.
5. Take comfort in the fact that you are not alone.
They say it takes a village to raise a child, but it also takes a village on the other end of life. I am touched when I see the residents and their families looking out for one another and forming a supportive, caring community within the confines of a memory care facility. If you have an Alzheimer’s diagnosis in your family, know that you are not alone. Find support and look for the bright spots in every day.
Photo courtesy of the author
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