Caring for my mother with dementia is an act of love that nearly broke me
As my mother's dementia worsened, my quality of life declined along with hers. For a long time I couldn't see what it was costing me, and I know I'm not alone.
On the day before Halloween in 2022, my sister called to say that my mother, who lived with them, had fallen and hit her head on the edge of a coffee table. She had a bump on her head and was dazed but seemed fine, my sister said. To be on the safe side, they were on their way to the emergency room to have her checked out.
Two weeks earlier I had moved out of the house I shared with my husband and moved into my own place for the first time in my life. Our divorce was in a tense and painful phase, yet I could sense a new chapter unfolding. It just wasn’t the one I imagined.
At the ER, the doctors ordered a CT and MRI to rule out brain injuries or stroke and she was admitted to the hospital overnight. The scans came back clean, but with her high blood pressure, dementia and extremely unsteady gait, a five-day hospital stay led to two weeks in rehab. By the end of it, it was clear she would need 24/7 care.
There was no question she would move in with me. With my sister and her husband working out of the home and a brother in a distant state, there was really no other choice. It wasn’t ideal timing as I navigated the end of my 33-year-marriage with all its grief and dislocation. But as the oldest sibling, and Mom’s power of attorney and healthcare surrogate, I had always expected that this role would fall to me.
This is what we women do, isn’t it? We step in as the caregivers. Upwards of 75% of all caregivers are female in the U.S. In the absence of humane family policy, we are the safety net.
That October day in 2022 was the beginning of a downward spiral for Mom.
What I didn’t realize then was how much of me would get swallowed up in the caregiving of a parent with advancing dementia.
And the truth is, no one can understand the emotional, physical and economic toll on caregivers of loved ones with dementia unless they are living it.
It’s okay to say it’s too hard
This hit home for me when I listened to a recent episode of We Can Do Hard Things hosted by Glennon Doyle with the guest Ai-jen Poo, the President of the National Domestic Workers Alliance and a tireless advocate on behalf of caregivers across this country.
I nodded my head as Ai-jen acknowledged my reality: “[Dementia] is brutal, because you’re just watching your loved one disappear right before your eyes every single day…I don’t know how people are doing it.” She referenced the episode of the TV drama This is Us when the matriarch Rebecca, with advancing dementia, says to her children, ‘You will not diminish your dreams or your lives because of this disease that is happening to me.”
I began to cry as Ai-jen said this:
“I think that’s something we forget when we’re in the chaos of caregiving…we are our parents’ legacies, and they don’t want us to get small or sad or depleted because of the disease. They want us to live.”
A moment later, this sense of being seen and understood evaporated when Glennon said in response:
“Is it possible that even considering that caring for a person is a diminishing of life is because we don’t value care?…I can’t think of a more horrific and hard but also more important use of a life. How could that possibly be diminished? What else is there? What’s more human? And at the end of my life, I hope to God that I have cared for the people that I love well.”
I am a huge fan of Glennon Doyle and the podcast, and most of the time I find myself agreeing with her or her co-hosts. But not this time. As I listened to her, I felt shame. I felt guilt. And while that is my own work to do—no one can make us feel a certain way, that power is ours alone—that moment of feeling unseen has stayed with me.
Because the truth is, over the next 10 months as the sole live-in caregiver for my mother with little respite, my life was diminished. I was living smaller. I was sad. I was depleted. Ai-jen was right.
But Glennon didn’t know. She couldn’t know. Unless you are in the position of caring for a loved one with Alzheimer’s or dementia, it is impossible to understand.
So this month during National Family Caregivers Month and National Alzheimer’s Disease Awareness Month, I want to share my story to help people understand and to let other caregivers know they are not alone and share some resources that might help. This is hard. It’s okay to say it’s too hard. It’s okay to look for other options than having our loved ones live with us, if living with us means we are falling apart. It’s okay to say the personal sacrifices to your marriage, your family, your children, your health, your employment, your sanity and self-esteem and so much more—are too much.
Wha does it mean to be a “good daughter?”
For nearly a year, I was torn between appreciating the opportunity to care for my mother and overwhelmed by the growing list of activities of daily living she could no longer do for herself, from meal preparation to dressing to toileting. As she was dependent on walker with a continued shaky gait, I couldn’t leave her alone for fear of a fall. She was sleeping more, had little interest in or ability to engage in conversation. Yet she was still her and still here. Then, as now, she recognized her family, and there are many moments when her personality, intelligence, kindness and humor shine forth. The language of hugs requires no interpreter.
But her dependence on me as caregiver meant I could seldom leave the house we shared. I worked from home, which made the at-home caregiving possible, but it wasn’t ideal to take a zoom meeting when Mom might call out for help to get to the bathroom. I had little time to exercise, healthy eating declined and I slept poorly, half-listening for the sound of her walker scraping the wood floor as she made her way to the bathroom because she would forget to use the bedside alarm buzzer to wake me.
My sister who has an office job helped on weekends and evenings when she could. My brother came for a long visit after her rehab visit. My siblings did what they could but the bulk of the caregiving was left up to me. I reminded myself that this was my choice and I didn’t tell my siblings how worn out I was.
When I felt anxious, sad, exhausted, or resentful about the situation, I pushed the feelings away. My mother had beautifully cared for me all my life. Wasn’t it my turn to care for her? And while there’s a certain tenderness, a sense of coming full circle, in helping my mother tie her shoes and bathe and pick out her clothes, I know she didn’t want this for me. She had told me and my siblings that she didn’t want to be a burden to us in her old age. She had set aside some money and she managed it carefully.
Even knowing that, I still carried on as her caregiver, determined to be the good daughter. It would take several more months and a deep self-reckoning to finally let go of that cherished sense of self, and understand that a good daughter cares for her mother and herself. The choice is not a binary.
Family caregivers need champions—and policy to support them
These choices are deeply personal and influenced by so many factors. Being able to afford care for a loved one with dementia outside the home is cost-prohibitive for many, especially for specialized memory care.
In America, the sad truth is that one has to be impoverished in old age to qualify for government support for long-term care.
Having lived in Sweden for 18 years, I have experienced living in a democracy that takes responsibility for its citizens as they age so they can retain their dignity and families get support. Sweden, Germany, Norway and several other industrialized countries even pay family caregivers.
We have to keep pushing to ensure the U.S. offers same level of dignity and support to our oldest citizens and their families. The cost to caregivers has become unsustainable. Consider these facts:
More than 1 in 5 adults—a total of 53 million Americans—are now unpaid family caregivers.1
Caregiver stress syndrome is now a condition characterized by physical, mental and emotional exhaustion.2
Caregivers experience depression at twice the rate of the general population, higher for women.3
Some 80 percent of baby boomers who provide care for a parent experience strain in their marriage.4
Caregivers experience a higher mortality rate than non-caregivers.5
Family caregivers lose a staggering $522 billion in wages every year while caring for a close relative of friend.6
While pushing for changes in government policy is important, there are ways caregivers can get more immediate support. Below are a few suggestions.
Please add in the comments any further resources and share any insights from your own experience as a caregiver that might help others. My aim is for this Substack to be a community that supports caregivers, especially those caring for loved ones with dementia and Alzheimer’s.
Together, we’re stronger.
Resources for Caregivers of Loved Ones with Dementia
Dementia Caregivers Support Group (Facebook group)
Dementia Careblazers (Facebook group), led by Natali Edmonds, board certified geropsychologist who offers free training for caregivers, and a YouTube channel.
The Family Caregiver Alliance resources
Find out more about the first-ever National Strategy to Support Family Caregivers
announced by the Biden Administration in 2022
Further reading
Who Cares: The Hidden Crisis of Caregiving and How We Solve It, Emily Kenway
The Age of Dignity: Preparing for the Elder Boom in a Changing America, Ai-jen Poo
The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss, Nancy L. Mace, Peter V. Rabins
(A reminder: paid subscribers receive an audio version of every newsletter.)
Last but not least, this week’s Three Songs for 3D:
Divorce
“Fly Away,” Tones and I.
I had a dream that someday
I would just fly, fly away
And I always knew I couldn't stay
So I had a dream that I'd just fly away
I've been on my own for a minute
Is it only me out here
Searching for the place to begin it
Is it me? Is it you? Is it fear?
Dementia
“The Mother,” Brandi Carlile
Welcome to the end of being alone inside your mind
You tethered to another, and you're worried all the time
You always knew the melody, but you never heard it rhyme
Destiny
“Breathe,” Alexi Murdoch
In the quiet of the shadow
In the corner of a room
Darkness moves upon you
Like a cloud across the moon
Your whole life is here
No eleventh hour reprieve
So don't forget to breathe
It is so hard. My siblings and I cared for our dad in his last six weeks of life (hospice care for the last few), and it was almost too much for us. Thank you for sharing your story and all the resources here.
Amy, what a powerful essay you have written in honor of yourself as the caregiver of a parent with dememtia, and of everyone in this country who provides caregiving to a loved one without structural support. The reality is just too damn hard! I applaud you for unapologetically acknowledging how hard this work is, calling a spade a spade. I think the psychological conditioning of being a "good daughter" adds an extra layer to this Herculean responsibility. When we feel attached to this cherished image of ourselves--which I myself have done all my life until just recently--the emotional burden can be suffocating, because, who are we if were weren't good daughters all the way? Our very notion of being a fundamentally good person would be threatened! And I support you 100% in saying: "This is hard. It’s okay to say it’s too hard. It’s okay to look for other options than having our loved ones live with us, if living with us means we are falling apart."
In addition to your courageous sharing of your how you feel about caregiving, your list of resources and songs add so much to this well researched article. I believe anyone struggling with caring for an elderly parent with dementia will find it extremely helpful.