As we honor our loved ones this Alzheimer’s Awareness Month of November, I invite you to submit:
- a memory, poem, or tribute on how being a caregiver has changed your life
- how having a loved one with Alzheimer’s disease has changed your life
- a bit of advice that you’d like to share
- just a memory
You can add it as a comment on this site, or send it to my email account and I will add it for you. Feel free to send a photo. firstname.lastname@example.org
I’d like to share something that my husband said to me three years before he passed away from younger-onset Alzheimer’s disease. This is in response to being asked what it’s like to have Alzheimers.
In Morris’s words—March 2007
One time I feel one way and another time I feel a different way. I cope by finding things to do. I read, talk to people, go out to lunch with my friends. I feel just like anybody else, but I’m limited in things that I want to do, or where I want to go. I have to have someone take care of me. I would rather be my own person and do what I can do as much as possible. It’s not great having this [Alzheimer’s] and there’s not much I can do about it. But I do have lots of great friends and family, and I’m lucky to be able to think and act and live a partial life.
I’m not very happy at times. It’s not easy for me, and my wife tries to help as much as possible. I feel frustrated. I can’t have my car, which was taken away. I don’t have as many options. We have our TM lunch*; one of the things I look forward to. That’s a happy thing to do. Having people around is obviously good. I like watching movies and TV.
Sometimes I don’t know what to do, or I forget things and have to depend on my wife. I’ve had things taken away from me. When I first got the diagnosis, I thought it was a bunch of crap. I didn’t think the doctor had the right diagnosis and that I was pretty much okay. Now I understand that I have Alzheimer’s disease and things are more difficult. That’s the way it is. Having a support group is very important to me. Sometimes I get frustrated and sometimes I feel that I’m still a human being and that I can do things.
I know I’m taken care of. I’m able to just be a good person that other people want to be around. I’m already enlightened in my own way. I feel like I’m my own being, my own person, and am living a life to the best of my ability. I like music and culture. I’m very lucky to have a support group of friends and family. In this life, I’m doing the best I can and I’ll continue to with friends and family.
I want to be treated like any other human being. My message to others is try to find your own happiness and do the best you can. I still like to meditate and I like to take a nap every day. I am getting more tired. I can’t do a lot or do as well as I used to do.
* About a dozen friends who practice Transcendental Meditation have been meeting regularly for lunch every Tuesday for the past 18 years.
This morning, I listened to an interview with the flutist Eugenia Zuckerman on NPR. Sadly, she was diagnosed with Alzheimer’s three years ago. This past September, Zukerman was playing Claude Debussy’s “Syrinx” — a piece she said that she’s played more than 20,000 times since the age of 10. In the middle of playing it, she drew a sudden blank.
Eugenia said that she wants people to know that having cognitive decline is “not the end of the world.” At this early stage of the disease, she is able to write, play the flute, and enjoy her everyday life. Her recently published book “like falling through a cloud” is a lyrical memoir of poetry that addresses coping with forgetfulness, confusion, and a dreaded disease.
Eugenia spoke of living each day to the fullest—a definite mantra of mine and most people. I am happy that she is enjoying her life by loving, sharing and playing her flute. But she doesn’t have a clue about what’s in her future. There will tragically come a time when her memory lapses manifest as blank stares. She may eventually not be able to recognize her face in the mirror and ask the existential question who am I?
I wish you, and Eugenia’s family and friends peace and strength on the hard journey ahead. Make each day count and, as Morris said, live it as well as you can. There will be days that are hard to get through, and days where you just want to stay in bed. Even if you have to drag yourself out of bed, do at least one thing that will bring you an inkling of joy. Make a cup of chai, take an Epsom salts bath, light a candle. Take a whiff of your favorite essential oil. Remember the good times.
Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia”–winner of the 2018 Book Excellence Award in self-help– in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store, Indie Bound.org, and many other fine independent bookstores, as well as public libraries.