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It would have been my mum’s 91st birthday this week. She passed two years ago this June after the long goodbye from the thousand small cuts of dementia. Although I experienced grief and sadness, it truly was a relief to bid my mum the final farewell after the long marathon of loss over many years. I gave a final kiss to the echo of the woman before me as the heat of life left mum’s body.
Should you celebrate your release from the hard years of struggling to care for a loved parent when their passing finally arrives? I struggled with this emotionally conflicting thought for quite a while through the spring of this emotion’s awakening.
I soothed my conscience over time by thinking about my own children. I came to realize that I would not want them to endure such hard emotional caregiver duties when my time comes. Although I’m sure they would embrace it with commitment, it’s not the path I wish for them. This gave me the realization that my own mum would have hoped not to have this gladly taken burden thrust upon me. This revelation helped me come to true terms with myself and the unsettling relief of embracing my mum’s passing.
Social expectations around grief gently corral your thoughts away from feeling this relief, but I believe it’s an important issue that needs more understanding and exploration. The unfortunate reality is that many of our age group are going to face this uncomfortable emotional experience. Forward thinking and discussion can help you deal with this possible guilt-inducing turmoil during an already difficult time.
I hope my thoughts don’t cause offence. I only want to share an emotional journey to acceptance—the acceptance that relief can coexist with the deep loss of a beloved parent.
I was already handling my mom’s finances when she was diagnosed with cancer. Since I only lived about 15 minutes away I gladly took on the role of caregiver, handling house stuff, taking her shopping doctor appointments, etc. I worked graveyard shifts to be available during the day. By the time a year had gone by to say I was running on fumes would be an understatement. I always told myself just suck it up because she was the one sick. But going into year two I am not especially proud of myself for once in a blue moon thinking how much longer is this going to last. Thankfully those thoughts were rare. When she past away after two and a half years it was a tremendous relief that she was finally free of her body and in a better place. After being able to grieve I am not ashamed to say it was a relief to me also. Something I did discover was the time I spent as her caregiver was was without a doubt the most fulfilling time of my life. I am forever grateful that my mom let me do this.
I experienced relief when my mom passed 18 years ago in January. She had a major stroke after open heart surgery which paralyzed her, changed personality and she experienced dementia and other health problems-for 11 years. I did a bit of direct caregiving as did my dad but her needs were so profound we were unable to manage it. My dad passed a couple of years after her stroke and I managed her care and visited frequently. It was very hard to watch her suffer. And it was hard to watch her suffer that long. She wanted to go long before she did. So I was relieved for both of us when she passed. As you say it was a emotional journey.
Thanks Mark. My wife and I were heavily involved in the care of our parents and her aunt. We’ve experienced COPD, strokes, dementia, and cancer. Some took years, and one went relatively quickly. When we lost a loved one, there was a complicated mix of sadness, loss, and relief. We felt relief that someone we loved was no longer suffering, but also that a significant burden was lifted. I think these are natural feelings. Despite these feelings, I don’t regret the time and energy spent in caring for people I loved. It was difficult, but it was also a privilege in many ways.
Like you and many in the HD community, we are doing our best to avoid being a financial or eldercare burden to our children. But I don’t think you can, or should , completely separate them from this stage of our lives. If we raise our kids to be loving, caring, compassionate people, I don’t think we can expect them to forget that when we reach the point of needing help. Our children were blessed to have great relationships with the grandparents, and experienced their aging and dying. On occasion, they were involved with their care. I think it helped make them into the good men they’ve become.
I think this is a complicated, difficult topic, that is very individual, and requires a balance. I doubt any of us will ever get it “right”. Thanks again for bringing up an important topic for all of us as we journey onward.
Treading lightly here, knowing HD themes tend to avoid religion, I will say that the stronger one’s faith is in the immortality of the soul, the more likely one can rejoice in the release of a loved one’s bodily suffering. “It is as if a kind gardener transferreth a fresh and tender shrub from a confined place to a wide open area … it maketh it to grow and thrive.” For me, when my dad died after several years of debilitating illness, it was exactly this gladness for his soul that offset my mourning the loss of his physical presence.
Mark,
I had my mother and twin brother both die from dementia within about 18 months of each other. My brother was only 59 years old. It was a blessing when both finally passed. My mother had not recognized any family members for the last several years as did my brother. I believe my brother did not even know he existed for the last year of his life, just a blank stare and nonverbal. I pray to god I just drop dead one day like both my grandfathers did. It would be a shock to my family, but there is no way I want them to go through the hell that is the slow death from dementia.
That is why I would hope to make it to Dignitas in Switzerland if I got that kind of diagnosis.
Amen to that David.
Mark, reading your post brought back my own emotional landscape when my mother died – a similar paradox of sorrow and relief. Grief for our loved ones is so universal, yet profoundly personal. I found that Mary Oliver’s poem resonated with me, and I wanted to share it here.
“To live in this world
you must be able
to do three things:
to love what is mortal;
to hold it
against your bones knowing
your own life depends on it;
and, when the time comes to let it go,
to let it go.”
My mother-in-law passed last August. Her actual passing was sudden. She had Alzheimer’s and was in memory care, but she died of a cardiac arrest, which is not usually the trajectory of Alzheimer’s. She was only 84 and except for the obvious was in good health.
Because she passed suddenly, it was still a shock. We had visited her just a few days earlier, and she had really shut down—just sat quietly in a recliner and didn’t engage with us at all. The person she used to be had slipped away gradually over the previous years. We were sad that she was gone, but really we’d been grieving her loss for some years. And her unexpected passing, when she could have lingered in that state for another decade, was, not gonna lie, a relief. We all miss her, though.
Mark, I don’t know if my words are going to come out the way I want them to. I’ve lost both parents, and I’ve watched my daughters lose their mom, my ex-wife. I think there’s a window of time towards the end of our loved ones lives where our brain works the way it should. It sets aside all the memories and confusion about death, and tells us that it’s right to say goodbye and to let go. That it would be selfish to think otherwise.
These days I have little monuments to my folks in various places in the house. All those memories that I temporarily set aside in their final hours are alive and well.
Relief when both Mom and Dad died. Mom had Alzheimer’s, and Dad suffered immense pain. Not only would I not want to burden needlessly those around me, but I don’t believe it’s godly to hold on to the very last breath. My wish is to pass the way of my beloved dogs.
Mark, this is an important topic, I think. You did not cause any offense. We are at the beginning of the long goodbye with Spouse’s mom. She found out about her diagnosis last week and is in denial. We are already grieving the retirement we thought we would have, at least I am. Chris
I think it is important to accept that relief as well as grief can co-exist on a loved one’s death.
I was relieved for my mother when my father died as although his death was, in isolation, sudden and unexpected, he was clearly on a trajectory of increased care, inability to do much for himself etc which would only more severely have limited her life.
I guess this probably was, secondarily, some relief for myself as I would inevitably have become frontline support and possibly have had to navigate the transition into care for him.