4 lessons I learned while caregiving for a chronically ill spouse
Marriages change when a long-term illness comes into the picture
My late husband, Aubrey, was diagnosed with hereditary ATTR amyloidosis in 2013 and passed away on May 22, 2022. Those nine years were spent transitioning from having harmony in our marriage to navigating a relationship wrought with challenges. We were encumbered not only by the stress of Aubrey’s failing health, but also by the need to meet each other’s expectations. We were constantly adjusting how we communicated with each other.
Long-term illness can either destroy a marriage or transform it into something extraordinary. Common marriage goals, and the dynamic involved in sharing equal responsibilities of raising children, carrying out household duties, and contributing financially, morph into a caregiver-patient dynamic.
Despite the challenges we faced as a couple under extreme pressure following Aubrey’s diagnosis, we both managed to pull through the struggles with surprising results. During his illness, we both learned a great deal, including the following four lessons I hope you’ll find helpful if you’re facing similar circumstances.
1. Communication is key.
A quote attributed to the Greek philosopher Epictetus observes that “we have two ears and one mouth so that we can listen twice as much as we speak.” Aubrey and I found ourselves having to orient each other toward a new way of interacting. We needed to adapt how we communicated to prevent each other from feeling unheard. In the heat of the moment, when managing overwhelming stress, it’s so easy for reactions to be heightened without addressing the root of a problem.
Looking back, I could’ve been more understanding with Aubrey. I could’ve opened up more about what I was struggling with. If I’d done that, perhaps he would’ve felt less alienated from me.
We caregivers can also feel angry and disappointed. It’s imperative that we have a trustworthy person, such a close friend, with whom we can discuss our feelings. With such an outlet, I found it was easier to temper my toughest emotions, because fundamentally, it was the disease that had upended my world, not Aubrey.
The book “Love in the Time of Chronic Illness: How to Fight the Sickness ― Not Each Other” by Barbara Kivowitz and Roanne Weisman touches on this topic.
2. Expectations need to be managed.
The moment Aubrey was diagnosed, I came to the painful realization that my expectations for our future together no longer mattered.
I found an article on the topic by KFF Health News insightful. It quotes Zachary White, an associate professor of communications at Queens University of Charlotte in North Carolina, as saying, “You have to rewrite the relationship’s expectations. And the longer you’ve been married, the harder that is to do.”
White co-authored a helpful book on the topic with Donna Thomson titled “The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver.” In it, the co-authors note that “when you don’t dare dream about the future, the present is your only refuge.”
Reading this passage forced me to accept that though the future had radically changed for Aubrey and me, I could choose to live in the present with him. I understood that expectations can lead to disappointment, so rather than expect things, I had to be intentional and live each moment with him.
3. Watch out for burden and burnout.
Loving someone who is dying takes a great toll on the caregiver. During my caregiver journey, I became acutely responsive to changes in Aubrey’s demeanor. When I noticed that he was withdrawn, I dug deeper to try to cheer him up. When his health took a downturn, I anticipated the worst-case scenario in which he would end up in the hospital, something I’d have to physically, mentally, and emotionally prepare for. At home, I’d catch myself making sure that I could hear him breathing. If he’d move differently in bed, I’d wake up to see what was wrong.
I was wound up tightly like a ball, in a constant state of alarm. Even today, I’m still unfurling from being a caregiver, more than two years after Aubrey passed.
4. It’s important to seek help when needed.
A 2019 research article in the journal Health Affairs titled “Spousal Caregivers Are Caregiving Alone In The Last Years Of Life” emphasized the importance of assessing caregiver strain and ensuring that support is provided to help mitigate stress.
With Aubrey, I recognized the need to better myself so I could help him. I began talking with close friends, and even with my own children, about what I was experiencing. When we open up, help will come. I know that seeking help may not be easy at first, but it’s so important to do.
I hope you find these tips helpful. If you have additional thoughts on the subject, please share in the comments below.
Note: FAP News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of FAP News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.
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Karen Hanshaw
Not only was I the spouse and caregiver, my full time job was a RN. I got so burned out by being surrounded by human misery and suffering, not just at work but at home. There was no respite. My husband was a private man and when he was in the hospital he did not want his son and grandsons to come. I truly could have used the company especially during those times. It was a long journey that entailed suffering for both of us.