As I write this piece for Cake, I have just passed the four-month anniversary of my own 89-year-old mother’s death from a fall and subsequent brain bleed. She died in a hospital, which was not what anyone wanted, but we don’t always get to choose the place of our death.
Jump ahead to these sections:
- Alzheimer’s and Dementia
- Before a Terminal Diagnosis
- Getting a Terminal Diagnosis
- Dying From an Accident
- Grieving the Death of a Mother
What I know and have known intimately for some time now is that the confluence of being the daughter of an elder and serving as a hospice chaplain who sees the journey of dying and death around on the daily has been complicated and frequently messy. While I’ve cared for hundreds of patients who were mothers and supported their children through the loss, nothing can prepare you for the death of your own mother.
But the stories of those families are also very much my own story. Sadly, many of these stories share some difficult choices adult children are confronted with when caring for their elderly mothers. The loss of your mom can be a powerful thing, no matter how much you do or don’t prepare.
Alzheimer’s and Dementia
Alzheimer’s disease is brutal. It takes away so much of what is the essence of our parents, and what we journey with until death is someone who is beloved, yet not known. Someone who cannot be the loved one they once were.
I think this is where I first discovered anticipatory grief 10 years ago, caring for a mother with advanced Alzheimer’s and her adult children who grieved greatly because of how much they had already lost her to her disease. It was difficult for them, especially with the loss of their mother being unable to recognize them.
The grief before death is a grief that children of parents with Alzheimer’s disease experience, with no timeline for either the disease or the emotions. This disease progresses slowly, and the losses can pile up greatly without knowing when death will come. It’s grief, on top of grief, on top of grief, before a mother dies.
Much gets altered in the caring of a mother with Alzheimer’s, but showing up (and many can’t show up) can be the best way to show your love because your love for her has not changed.
The connections we can still make — showing photos of our children, talking about and eating favorite foods, listening to favorite music, transporting ourselves to our mother’s gardens in “memory-making” with her, showing photos of yourself with her — all these moments of caretaking matter throughout the journey and how you will come through this.
Before a Terminal Diagnosis
You may think that the transient nature of young people moving about in the United States, leaving hometowns for big dreams and the desire for careers in cities, doesn’t affect how elders grow old and die in this country—until your mother’s health declines.
Sadly, the complicated nature of being a mother and raising children is that not everyone will have a loving relationship with their mother. Some adult children leave, vowing never to return because life was so difficult and broken. They may have been witness to violent, abusive, or unloving parents and situations. The death of a mother will be very different for these children. Families are sometimes so broken that no amount of illness, dying, and death will heal that complex build-up of sorrow.
No matter what your age, if you are not living in the same town or same state as your mother when she becomes ill or infirmed, the time will come when you may have to confront yourself about what to do and how to participate in her care, or not.
If you are in your 60s, and your mother grows older and older with each birthday, she may have a declining ability to live at home alone for a multitude of reasons. She may be fiercely independent and refuse help, be a fall risk in her own home, or have an elderly dog in the way. Many adult children are examining what they can do to participate in their mother’s care, and how they can do it, or not.
All of these variables are determined by your relationship with your mother. Some of us are very close to our mothers. Others may not be at all. Here are some of those challenges, no matter what your age and how close you are.
- Your ability to travel to your mother in an emergency. Emergencies will happen. In my case, my brother became the one who went for the surgeries because I lived three states away from our mother, and my brother was only one state away.
- You may not know the names of her doctors. It also means that in an emergency, you might not be allowed to receive information about your mother’s condition.
- You may not have a list of her neighbors and their phone numbers. If and when you visit from out-of-town, meet a neighbor and exchange phone numbers.
- You may not know when she is unable to pay her own bills. I’ve met so many families over the course of my work that showed up just as the electricity was going to be shut off. Their elderly parents had become confused, and no one understood what the signs of confusion looked like.
- You may not realize when the time has come to go to an assisted living facility, or have caregivers employed in the home. There may be a time when she can’t take her medicine properly, or care for her own personal hygiene needs, or even prepare her meals safely. She may tell you that everything is fine. But everything is not fine.
- You may not know what her end-of-life wishes are. Also known as advanced directives, they are best to be filled out when we’re healthy and have conversations about end-of-life care for when we are close to dying. These are conversations that create other conversations that death is part of life and that human life ends.
Getting a Terminal Diagnosis
As someone who has journeyed with hundreds of families as a hospice chaplain, I can safely say that families are complicated. When our mothers get a terminal diagnosis, the one who gave us life, it means something totally new, maybe even foreign to our understanding of life.
Families get closer. Families become broken. Families that were broken may work towards healing. Families that were estranged from each other, sometimes stay estranged.
It can be difficult to support a dying parent. No matter what your age, whether your mom is at her home, your home, or her home is at a facility, bearing witness to a mom who enters hospice is a journey like no other. Here are some of the challenges you might face:
- Having bigger conversations about what is needed for end-of-life care.
- Talking about final wishes about a funeral, or whatever kind of remembrance service seems important.
- Saying what needs to be said at her deathbed. This might include good-byes, life review, memories, favorite trips, great holidays. Create memories in dying.
- Eating well as long as you can. Create favorite meals. Eat from favorite restaurants.
- Being present as best you can to her taking her last breath. The finality of death cannot be hidden. She birthed you…if you can, be at her dying.
Dying From an Accident
As I mentioned at the beginning of this article, my mom died of a fall, resulting in a brain bleed. By the time we arrived at the emergency room and received the results of her CAT scan, she was already on her journey of dying. There were no mutual goodbyes.
My last conversation with her as she was on the ground waiting for the ambulance was me asking her if she would please use a walker from now on. She said, “Yes, I will.” She died about 30 hours after she fell in her driveway from her brain not being able to tell her to breathe.
Dying from an accident is unplanned, unpredictable, shocking, and unexpected. The blessings of having time in hospice to say everything you need to say won’t happen.
A blessing that was part of my mom’s death is that our family had had long conversations about what she wanted, and didn’t want, at the end of her life. My brother and I knew that no heroics were wanted. We even signed a Do Not Resuscitate (DNR) form that had been on her refrigerator for three years just in case exactly what happened…happened.
Grieving the Death of a Mother
Which brings us to how to live life without our mother’s presence.
The day my mom died, my brother and I came back to her home to care for her beloved dog and her house as we made plans. I made a simple altar where we could light a candle. It slowly became filled with photos of her and beloved keepsakes. We put photos of her departed friends on the altar, a bottle of her favorite cologne, the binoculars that she used when birding, pictures of her parents, and photos of the dogs she had loved that had also left this world.
We ate chocolates that I found in her nightstand. I went out and bought more chocolates after we finished that first bag. We limped through that first week drinking great amounts of coffee and eating several bags of chocolates. We were attentive to her beloved dog’s profound and sorrowful grief. And then we all shifted after that first week. We both went back to work, and we went from mourning her, to grieving her.
We all move through this differently from each other which can be comforting or complicated depending on the day or the hour. My grief is still raw and comes in daily waves as I am still surrounded by the belongings that she treasured. While I am getting rid of some, I’m taking pictures of some of my favorites. The dining room table that is older than me that I sat at as a toddler and her hutch that has nooks and crannies that I played in as a young child…that can’t come with me.
Her belongings still tell me of her story. I know it won’t always be this way. I’ve journeyed with many friends whose mothers have died before mine, and they have shown me how life does and will continue, albeit differently.
Losing a Mother is Witnessing the Cycle of Life
For more than 10 years now, I have watched hundreds of children of all ages mourn the death of their mothers. What I have discovered now following the death of my mother is that her death shifts everything.
For me, it has become the deepest reminder that there is finality in the human life experience from birth to death. With our mothers, we receive life from them and then we end up bearing witness to their death. It highlights not only our own mortality and what we do with our lives but a new conversation with ourselves and those we love from this point forward.