Caregiving for a person with dementia is one of the most difficult things anyone will have to do. The pain and suffering is intense, but the rewards are plenty. Even though the person you are caring for cannot express gratitude, on some level they know and appreciate your sacrifice. They are eternally indebted to you. As Lou Gehrig said in his farewell speech, “When you have a wife (caregiver) who has been a tower of strength and shown more courage than you dreamed exists—that’s the finest I know. So I close in saying that I might have been given a bad break, but I’ve got an awful lot to live for.”
Kim Mooney, the Board President of Conversations on Death, and Director of Community Education for Tru Community Care, Colorado’s first hospice, has said that as caregivers “the sacrifices you made changed the course of your life. As you once again look at finding a new course, you will over time grieve your loved one and what you let go of or stored away. You will also begin to discover the things you learned from giving so much. As you recognize and honor what you did, it will begin to shape the meaning of your life now. Whatever the challenges ahead in rebuilding, that understanding can give you the strength, commitment, and satisfaction to make your life more meaningful than ever.”
So, what’s next? Stop, take a deep breath, and think about your journey: where you came from, what you did, and how you feel. When my husband’s final health crisis was over and after I buried him, I realized that I hadn’t fully breathed for years and that my body was strangled with tension and fatigue. I had meditated, eaten fairly well (besides the times I was too tired to cook and made a dinner out of popcorn and ice cream), danced, exercised, and practiced yoga. All these things helped keep me calm, and brought me back to my “self.” But being on call for years took its toll. And after it was all over, while ensnared in the tentacles of grieving, I felt relief. Relief that I wouldn’t feel the pain of watching Morris lose yet another function. Relief that I wouldn’t have to fill another prescription or talk to a physician about my husband’s condition. Relief that I didn’t have to travel the 15 miles to visit him in the memory care home, where I’d inevitably get depressed. Relief that I could stay home and not have an obligation other than caring for myself.
And yet, the final letting go of my role as caregiver was uncomfortable and felt strangely similar to sending my children out into the world. How would I define myself if I were no longer a caregiver? How would I fill up the time I had spent caring for my husband for an entire decade, one fifth of my life? Creating a new identity takes time, practice, and patience. And we are told by grief counselors to not rush things. Do not make a major change in your life, such as moving out of the house you’ve lived in for years, or to another state. But day-by-day, it’s okay to acknowledge that we are not the same person who heard the dreaded words from our loved one’s doctor: “You have dementia, most likely of the Alzheimer’s type.”
As caregivers we take a journey through fire and ice and land on solid ground surrounded by calm waters. Then it’s time to swim to shore and get our bearings. Be patient, be kind to yourself, and set out to discover different activities, small and large, that ease you to calmer waters. Here are some ways to help you get there:
- Choose at least one healing modality in this book and integrate it into your life. Dance, do yoga, try journaling, find someone to walk with, etc.
- Clean out your closets and drawers.
- Wash the garage floor and then paint it.
- Take a cooking class.
- Join a health club or YMCA.
- Take a Zumba® fitness class.
- Ride your bike.
- Join a hiking club.
- Learn how to sew or knit.
- Serve food at a community table or sort food at a food bank.
- Plant a garden.
- Play a musical instrument.
- Learn a new language.
- Travel! Visit friends and family.
- Take long nature walks.
- Make it a habit to soak in a bath with Epsom salts.
- Get a puppy or kitten.
- Volunteer at the Humane Society.
- Read to elementary school children.
- Join a book club.
My journey to calmer waters
My husband’s illness changed the course of my family’s lives in ways that were unexpected, devastating, and empowering. I developed into a strong matriarch and quickly learned how to take charge of my husband’s care, family business, and my children, without the help of my partner. And not having a partner, with whom I would typically make important decisions with, was one of the hardest things of all about being a partner to someone with Alzheimer’s disease.
Not having a partner, with whom I would typically make important decisions, was one of the hardest things of all about being a partner to someone with Alzheimer’s disease. Deciding where and when to place Morris in a memory care home, figuring out how to finance it, and deciding when to enlist the help of hospice were the kinds of decisions I would have discussed with my husband.
I became a compassionate caregiver, not just for Morris, but for other residents of the memory care home where he lived the last two years of his life. I went through a lot—as all caregivers do—but I’ve come through. I’ve recreated my life, and have learned to look forward with hope, wonder, delight, and inspiration after giving so much of myself to the person I vowed to spend my life with.
There are days that go by without my thinking about Morris. After all, it’s been over eight years since he’s been gone. It’s still hard for me to look at family photos because our family was happy, and a link is missing. I know for my children the hardest thing is that their own children are growing up without knowing their grandfather, who would have loved to be a part of their lives. We will always miss him, but our happy memories fill in the gaps, and we honor him eery year on his yahrzeit the anniversary of a Jewish loved one’s death.
I have a new love in my life and grandchildren to enjoy and cherish. I feel good and I am happy! As my beloved teacher Swami Kaleshwar always said, “Life is short, make it sweet.” I will and I do.
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.