Life After Alzheimer’s

Posted on September 16, 2017


My mom died when I was 19. She was 49. I stopped being a caregiver. But dementia is a shadow that continues to follow me.

The summer has ended. I am relieved. I won’t have to look at pictures of people eating ice cream. Eating ice cream makes me anxious. I don’t mean feeling guilty. I mean palpitations, panic attacks and sleeplessness. You see, early this year, I discovered that I was on the borderline for diabetes. People that have diabetes have a higher risk for dementia. When combined with my horrifying family history with Younger Onset Dementia — multiple people, multiple generations — it adds up to a ridiculous amounts of fear (and perhaps rightly so.)

20150718_224108Most of my time goes in doing compensatory activities that reduce my risk. Eating based on the Mediterranean or Brain Diets. Doing yoga few times a week to improve flexibility, regulate stress, improve sleep. Going for walks after meals to regulate my sugar levels. Journalling, listening to music, crosswords, Words With Friends — you name it, I do them all. I dance (like no one’s watching and sometimes they aren’t.)

When I do all of this, I feel much better. But the thought is never, “I will not get Alzheimer’s.” It is more like, “I may get it later, perhaps in my 50s or 60s or 70s.” My mom was 42. FORTY-BLOODY-TWO!

Things that can disturb this peaceful state of being? Literally anything. Going out with friends. Taking a vacation with others. Having a bad day at work. Everything impacts this balance. When I am not in control of my situation, my ability to do my compensatory acts like eating on diet or exercising, for example, is lowered. When I don’t do them, my anxiety shoots up and my self-esteem plummets.

I am 36 now. I have been happily married for almost 7 years. Most of my friends and cousins have children. I don’t. I won’t. I don’t want to be a parent. Most people think it’s because of the fear of passing on the genetics. May be. Maybe I don’t want a child to take care of me. Actually, if I had a child now, it might only burden my husband to have to care for the both of us. Also, if I have only a few years, I don’t want to be saddled with responsibility of caring for someone else. The same reason, I can’t have pets, or even plants! No kidding. Only cacti for moi.

My emotional state is often dissected (by idiots) as having an eating disorder which is characterized by a person trying to control their physical body to reduce inner anguish. To me, I am doing it only to reduce my risk. And it is backed up by data that it will help reduce risk, even genetic risk. So how can you call it a disorder? So, my therapist and I are working on giving me a budget, like in weight watchers, to allow myself to eat ice cream and enjoy it.

The other thing that is happening to me is feeling stuck in all realms of life. How do you live your life to the fullest when you feel like you just have a few good years? Do you work full-time? Do you spend time travelling? Do you help others? What do you actually do? Live life to the fullest, they say! How? And is it even really possible? Most days, I just want to live in an ashram and be peaceful under a tree. Help out with the cooking, cleaning and other chores in exchange of meals and a place to stay. In other words, become a sadhu.

What will I eventually do? I will let you know when I figure it out. Right now, my therapist and I working on teaching me to let myself be — something I have successfully taught several people as a social worker myself. I am learning to create an ashram within myself.

Isn’t that the goal?


Posted in: life