Dealing with caregiver guilt is a burden we rarely discuss
You can love someone wholeheartedly and still be tired from caring for them
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Guilt has a remarkable ability to creep into our lives, make itself comfortable, and refuse to leave. And when you are caring for someone you love, it seems to have a permanent seat at the dinner table.
As a patient advocate, I often hear people talk about the guilt that those living with amyloidosis experience. Imagine being someone who has always been independent, perhaps the one everyone relied upon, only to find yourself needing help with the simplest things.
That loss of independence can be heartbreaking. The disease’s impact is far-reaching. A parent may feel guilty asking their child for help. A spouse may apologize for needing assistance. Sometimes, even a simple request is followed by those painful words: “I’m sorry I’m such a burden.”
If only they knew that the person standing beside them was probably carrying guilt of their own.
Acknowledging our feelings as caregivers
During the World Amyloidosis Day roundtable discussion organized by the Amyloidosis Alliance, hearing the panel members’ perspectives reminded me how differently caregiving can shape our lives, yet how familiar the emotions are. I had the pleasure of lending my voice to the session and sharing my walk with my late husband, Aubrey.
If you’re caring for a parent, it can be difficult to experience that role reversal. The hands that once held yours to keep you safe now reach for yours for support.
You want to do everything. Be there for every appointment, notice every change, and somehow juggle work, family, and the rest of life’s responsibilities. And when you cannot, guilt can whisper that you should have tried harder.
Caring for a spouse brings another kind of heartache. I know this because I spent nine years caring for Aubrey following his diagnosis of hereditary ATTR amyloidosis in 2013.
I loved him dearly. But some days, I missed simply being his wife. I missed the ordinary things, the spontaneity, the conversations that weren’t about symptoms, medications, or the next hospital appointment. At times, I was his wife, nurse, appointment coordinator, researcher, and personal assistant. All that was missing was a salary and a decent annual leave package!
And yes, there were moments when I was tired, frustrated, or wanted a little time to myself.
Then came the guilt. How could I possibly feel exhausted when he was the one suffering? How could I wish for a break when he couldn’t take a break from his illness?
So, like many caregivers, I carried on. Smiling, organizing, reassuring, and pretending I had everything under control. I suspect I deserved an Oscar for some of those performances. But beneath that smile was a woman who was frightened, sometimes overwhelmed, and desperately trying to hold together a life that was slowly changing.
The hardest part is that we as caregivers rarely allow ourselves to acknowledge those feelings. We convince ourselves that love means endless patience, that being a good caregiver means never complaining.
And when our loved one is gone, guilt doesn’t necessarily leave with them. It simply changes its questions. Could I have done more? Should I have noticed something sooner? Was I patient enough? Did I make the right decisions?
I have come to understand something I wish I had known earlier: You can love someone with your whole heart and still feel tired from carrying so much of their world.
Those feelings do not make us unkind or ungrateful. They make us human.
Perhaps we need to stop telling caregivers how strong they are and start asking how they really are. And when they answer, allow them to be honest without feeling they must apologize.
Because sometimes, what a caregiver needs isn’t advice, another responsibility, or a reminder to stay positive. Sometimes, they need someone to say, “I know you’re doing your best. And it’s OK to be tired.”
Patients carry guilt for the independence they have lost. Caregivers carry guilt for the moments when they cannot give any more. Neither deserves to feel ashamed.
And if there is one thing I have learned through loving and losing Aubrey, it is this: Love was never measured by how much we could endure without breaking. It was always there, even on the days we struggled.
Note: Amyloidosis 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 Amyloidosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.
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