Her husband had Alzheimer’s, so she became a caregiver. She never wanted to be a caregiver. It’s not like she filled out an application for this job. It’s just what you do when your partner has dementia.
She described it as a roller coaster of a journey, and she resented the trip. There were moments of joy. There was a lot of laughter. But overall she felt cheated. Cheated out of the trips she and her husband planned for after retirement. Cheated out of how she thought she and her husband could provide childcare for the grandkids. Just cheated.
She wanted some time to herself, but she never seemed to have it. She wanted her kids to come over and stay with their dad, but they never did. She told her friends she dreamed of being able to wander around Target aimlessly on a Sunday. And sometimes all she wanted was to be able to take a hot bath without her husband walking in and needing help with something.
She wanted to sleep through the night but hadn’t in a few years. She wished she had the time and energy to put in an old fitness DVD and do a workout. Her friends invited her to go out for dinner once in a while, but they knew she’d say no. Eventually they stopped asking.
Then her husband died.
And the strangest thing happened.
She didn’t know who she was.
Every other role in her life–friend, volunteer, mother, grandma, neighbor, reader, traveler–now seemed unfamiliar and uncomfortable. And she found herself yearning to be a caregiver again.
There was a sense of relief, of course, when she had more freedom. But she also just felt empty.
She didn’t realize it at the time, but the caregiver journey–as difficult as it had been–was a journey that made her proud. She had been a great caregiver to her husband. She felt a sense of accomplishment. When she looked back, she realized that her years of caregiving for her husband were sacred and meaningful.
And yet she still felt resentful and cheated.
But she’d go back.
If she could rewind time and re-live those experiences of bathing her husband and brushing his teeth and making sure he ate, she’d do it in a heart beat. It was exhausting. And frustrating. But it also gave her this feeling of warmth and purpose. It was like she was put on this earth to care for him. And she did care for him. She fulfilled her mission.
She had a hard time finding another role that gave her that sense of purpose. Being a grandma was fun, but her grandkids were getting to the age where they didn’t need her. She started going out with her friends but felt isolated because they couldn’t really relate to what she’d been through. She did some solo travel but it just made her realize that no one really needed her.
And she’s still figuring it out. She signed up at a gym and is doing some group exercise classes. She wants to volunteer at a hospice but the training isn’t for another month. She brings snacks to her grandson’s soccer games. She’s doing some reading on finding a purpose and living a meaningful life and makes fun of herself for the stack of self-help books on her nightstand.
She knows she will get there. She’s surprised that the hardest role she’s even taken on is so hard to let go. She hated all the stuff she now misses, and it doesn’t make sense. She’s angry at herself for not finding more joy in the daily caregiving grind.
We are all constantly re-defining our role and purpose in this life. We are all searching for meaning.
But she’s really doesn’t know why she’s here now, and she has faith she will figure it out in time.
And this brings me to one of my favorite quotes:
In three words I can sum up everything about life: it goes on. –Robert Frost
I felt every word of this post so much. If it had been about caring for a mother and not a husband, I’d swear I’d written it myself. The 14-year journey of caregiving for my mother (which I’d do all over again in a heartbeat and be much better at it the second time around) nearly killed me, and then losing her along with my identity in 2022 nearly killed me again. So thankful to have found a new purpose and hope that the woman you wrote about eventually does as well. Thank you for sharing her story.
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This column is spot on with my experience. Seven years of caregiving filled with laughter, love, resentment, and occasionally despair. The last year an unfillable void.
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I’m at the beginning of this journey and hope that I can be that “great caregiver” to my husband that was described here. Yes, there is joy and laughter, and pride at the end of the day. But often, the role of caregiver to a loved one with dementia is romanticized — not just by Hollywood, but also by professionals in the field of caregiving who cheer us on, pat us on the back, and even tell us that the experience will make us better people in the end. But, the truth is that caregiving often kills the caregiver before dementia kills the loved one. Rather than glorifying the role, we need to demand that society and the medical profession give us the help we need.
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Couldn’t agree more. We are failing our caregivers.
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I understand that every case of dementia is different and see that play out with my husband and others I know experiencing it. But reading this helped me understand that’s not necessarily true of the caregiver role. I could have written the first part of this story – it’s my story too. Reading it helped me feel understood and in good company. Thank you!
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