Grief and Relief: When caregiving ends

GedankenCaregiving 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:

  1. 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.
  2. Clean out your closets and drawers.
  3. Wash the garage floor and then paint it.
  4. Take a cooking class.
  5. Join a health club or YMCA.
  6. Take a Zumba® fitness class.
  7. Ride your bike.
  8. Join a hiking club.
  9. Learn how to sew or knit.
  10. Serve food at a community table or sort food at a food bank.
  11. Plant a garden.
  12. Play a musical instrument.
  13. Learn a new language.
  14. Travel! Visit friends and family.
  15. Take long nature walks.
  16. Make it a habit to soak in a bath with Epsom salts.
  17. Get a puppy or kitten.
  18. Volunteer at the Humane Society.
  19. Read to elementary school children.
  20. 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 AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie, and many other fine independent bookstores, as well as public libraries.

12 ways to ensure end of life peace for our loved ones and ourselves

White Bird in Clouds

A couple of years ago, Mom and I talked about facing the end of her life. I asked her if she had a good life and she said, “yes.” I asked her if she had regrets and she said, “yes.” But she didn’t want to talk about that. I told her I would do my best to be with her at the time of her passing. I was, and I am thankful that I fulfilled my mother’s wish and my promise to her.

Just two weeks ago my beloved mother passed away from pneumonia. Pneumonia has traditionally been called “the old man’s friend” because a frail elderly person typically loses consciousness and passes fairly easily in sleep. Although it was not easy watching my mother drown in her own fluid, she appeared to not be in pain. Her breathing was labored for hours, and then she sank into a state of peaceful acceptance as her last breaths came in whispers until the last tiniest breath sealed the finality of her life. 

I’m relieved that I had made the funeral arrangements with my brother a year ago. At least I didn’t have to deal with that on the day that the earth stopped spinning and I forgot to drink water as I faced a new reality of living in a world without a mother. I am also relieved that I made arrangements with Chevre Kadisha, the Jewish Sacred Burial Society. Many religions have complex codes of conduct for survivors and very specific rituals and customs that have been carried out for centuries. Harvey Lutske writes in The Book of Jewish Customs that the practices and customs rabbis established for survivors to observe following the death of a loved one help the survivors “cope with their loss, continue with their lives, recover emotionally, pay respect to the dead, and perpetuate the memories of those who have gone before us.”

Final gift of love

My mother’s body was lovingly washed by a group of women in a ritual called Taharah. This cleansing requires several people because the entire body must be washed and moved from side to side in a specific way according to Jewish law. Afterwards, a huge amount of water is poured over the body and passages are read from the Song of Songs. The people performing the Taharah ask for forgiveness in case they performed some indignity. The body is then dressed in a cotton or linen shroud and put into an unadorned, pine coffin. Typically, someone sits with the body or “met” until internment. This is called sitting Shimira, and it is often done in two-hour shifts around the clock. The person reads psalms or prayers silently or out loud, or meditates while a candle burns continuously at the head of the coffin.

Buddhists also incorporate a cleansing of the body and a vigil into their mourning ritual. Families are often invited to wash the body of their deceased loved one. Washing a corpse enables you to become intimate with death in a way no other thing does. It’s hard work, but it’s an important way to honor the dead, said one Buddhist minister.

Death is the great equalizer

To the question, “What is the value of death?” the Jewish rabbis answered, “If nothing ever died, we, the human race, would not learn how to value time. Life’s finiteness is earmarked, and ended, by death. And learning to face death may be life’s greatest challenge.”

As hard as it is, we can take control and manage the death and dying of our loved ones. We can do things that make sense to us and provide us with comfort. Kim Mooney, the Board President of Conversations on Death, and Director of Community Education for Tru Community Care, Colorado’s first hospice, says, “The more you’re involved in the death and grieving process, the more we’re able to be in touch with that innate place in ourselves that tells us how to live. It’s the fear of death that makes us live. And it’s the terror of death that makes us run from the experiences that will teach us.”

As painful as it is,’ says Mooney, grief work and dealing with the death of a loved one guides how you’re going to live your own life. “We’ve skewed our relationship to death in this society,” she says, “but we can’t walk away from it. If you don’t do the work around it, you will somehow diminish the quality of your life. Grieving is a life-long process. Our lives are a series of gains and losses. Learning how to grieve, and incorporating a loss and moving on is critical to being able to become a mature, spiritual person because it implies an acceptance of what life is.”

I am an expert at grieving because of my significant losses. But this time will be different because I lost my mother, my primary connection to the world. This time is especially profound because no one can replace a mother. It will take time before I don’t have the thought to call her, to check in with her, to make sure she is okay. And even though I have children and grandchildren, I will always ponder the profoundly unique love that binds a mother and child in remembering my own sacred relationship with my mother.

In listening to the sweet words and stories that so many people told me after learning of my mother’s passing, I am reminded that it is how we make people feel—not what we accomplished—that is what we remember about a person. Death once again serves as a teacher to remind me that we are here temporarily, and that as my teacher loved to say, “Do not trust the time. Life is short, make it sweet.”

These personalized rituals can provide comfort and ease the intense pain that accompanies death, dying and grieving:

  1. Have a heart-to-heart talk with your loved ones before they get too ill. The Five Wishes is an easy-to-read end-of-life document that helps makes the difficult discussion about what you would like your end of life to look like.
  2. Hospice is a free palliative service offered by Medicare/Medicaid that supports the dying patient as well as the family
  3. Play music that the dying person loves, sing hymns, chant, etc.
  4. Dress and wash the deceased and dress the body in a white linen shroud
  5. Muslims typically share their prayers with the person who is dying before encouraging the dying person, if possible, to say or listen to the words, “I bear witness that (there is) no god except Allah; One is He, no partner hath He, and I bear witness that Muhammad is His Servant and Messenger. Once the person has passed away, the next step is to perform the ghusl, (similar to the Jewish taharah) or the washing of the deceased’s person body. The ghusl can can be done by most adult family members of the same sex as the deceased. After the body is washed, it is then enshrouded, typically in plain, white cloth.
  6. Have a meaningful farewell service
  7. Honor the loved one at different times during the year
  8. Build memory books
  9. Finish what the deceased person didn’t
  10. Write letters to the deceased and writing them back to yourself
  11. Donate a toy for the age of a baby or child who died to “Toys for Tots
  12. Write a life story