The approaching of Mother’s Day brought memories of my aunt who just passed away in January. She had suffered from Alzheimer’s for the last two decades, an ugly disease that took her mind away little by little right in front of our eyes.
I grew up in Aunt’s home since I was about three till I went to college. Other than Grandma, Aunt was as close to a mother figure as anyone could be. She was a dedicated teacher who rose up the ranks and eventually held a senior position in the school district. When I was little, she would look me in the eye and ask, “Who is your mother?” I’d point to her with a smile on my face, which always made her giggle happily. Whatever treats she got from work, Aunt would bring them home for her three children, my sister and me to share.
One day, I was running outside with the other kids when Aunt came back from work. She took my hand and led me home for dinner.
“Oh, my goodness! You are burning hot.” Aunt put her hand on my forehead.
It turned out I had a 104 degree fever. Aunt took me to see a doctor immediately.
Aunt was a lively and outgoing person by nature, but decades of being sandwiched between her mother and husband Yan took its toll on her. Whenever conflicts erupted, Aunt would weep silently. After her older daughter got married, Aunt would go live with her for a few days and threaten to divorce Yan for hurting her mother. But they always ended up getting back together.
Now that I think about it, Grandma didn’t have to live with Aunt and Yan. There was a little room under my parents’ name that was unoccupied most of the time. But the attachment between Grandma and Aunt was so strong that kicking her mother out was simply not an option.
In the early 1990s when Joe and I lived in Long Island, NY, I started to get disturbing news that Aunt was getting so forgetful that she couldn’t find her way home sometimes. I went to see her whenever I was in Shanghai. In the beginning, there was some eye contact, which I’d like to take as a sign that she recognized me. As I sat there and chat with Yan, tears would roll down Aunt’s cheeks. It always made me sad. At the back of my mind, I wondered if Yan was treating his wife well now that she was totally dependent on the man whom she had tried to break away from numerous times.
The downward spiral was unstoppable. The eye contact disappeared along with the tears. Aunt’s physical deterioration was even more disturbing: her cheekbones bulged, her eyes sunk in, she shrank quite a bit, and needed help with anything from going to the toilet to eating. When I saw her last October, she was in a vegetative state, fed through a tube. Because Aunt had been immobile for a very long time, her body had stiffened into a sitting position, with one leg crossing over the other. I couldn’t help but wondering if she could have stated her mind, what choices would she have made for herself?
Watching how Yan was feeding her, cleaning her, talking to her, and trying everything in his power to keep her alive, I was finally convinced that he had been a loyal husband and good caregiver. Doing this consistently for twenty years requires a lot of love, patience and endurance.
Today thirty-five million people suffer from Alzheimer’s globally, and the number is expected to double by 2030. If you are one of those who choose to be ready in case the monster gets you in spite of all the rights things you do for yourself such as stay on a good diet, exercise and remain positive, you need to pick hobbies that require the use of your hands. When Alzheimer’s hits and your brain stops running the show, it will get increasingly difficult to carry a conversation, read or write. However your hands are still going to remember the things they are familiar with like knitting or making paper birds. Medical experts believe that by keeping busy with the hands, the downward spiral can actually be slowed. Exercise for the purpose of improving balance and muscle strength will keep you mobile longer after your brain gives up due to loss of neurons and synapses in the cerebral cortex and certain subcortical regions.
At the end of the day, I believe it was Aunt’s loving heart that made her husband and family want to keep her around for as long as they could. I will always remember her kindness, generosity and the sacrifice she made to keep her version of the family together. I hope there will be cure for Alzheimer’s in the near future so that millions like Aunt can find their way back to life and their loved ones.
Lovely. Thank you for sharing this with me on Maria Shriver’s web site. It is a reminder to make every moment with our loved ones matter by being fully present and attuned to what is happening in their life.
June 20, 2013 @ 12:22 pm
I am so touched by your description of your aunt. She was loved by everyone in the family. It is very hard to take care of a loved one with Alzheimer’s. At the late stage, there is no communication, no interaction, no reaction. What kind of love a spouse needs to take care of someone for 20 years!
May 14, 2013 @ 6:43 pm
I was watching this French movie named Amoire. Talking about how an old couple dealt with the multiple severe strokes the old lady had. Very sad movie. For Alzheimer’s, it could be even sadder. There might be cures to these diseases in the near future. But there will always be even harder and nastier ones come to us. The question to us is how to let go of ourselves.
May 7, 2013 @ 12:49 pm
Cure is on the way.
May 7, 2013 @ 12:27 pm
I broke into tears by reading this blog, deeply moved.
May 7, 2013 @ 9:54 am