My husband lives under the banner of his disease. This may sound hard-hitting, but it is the fact of the matter. The sooner carers appreciate that hereditary amyloidosis may transform their loved one into someone else, the better they will adapt to their altered relationship with each other.
I say “adapt” instead of “adjust.” Adjusting entails small tweaks made along the way to accommodate certain shifts. Adapting, on the other hand, is much greater and tougher. Adapting means walking into the fire with our loved one and being burned and purified together while resisting the urge to let go. Adapting is a 180-degree conversion from achieving selfish desires to giving ourselves away for the benefit of another while not losing sight of who we are.
Amyloidosis can break a person down. First, it hurts them physically. Then, it can force their mental and emotional well-being down the drain. If caregivers are not careful, this metaphorical landslide can rock the ground we stand on. Before we know it, we can be buried in rubble with our loved ones.
It pays to remember that we can never take their pain and suffering away. We can try to understand, but we will never fully know what they experience. A parent can’t suffer in their child’s stead, and neither can a wife do the same for her husband. What we can do is alleviate their discomfort with positive words and caring actions. We can try to absorb as many stressors as possible while keeping things together.
We may become so good at this constant juggling act that one day, the forward thrust both patient and carer initially stumbled on becomes an easier ride. We must hold on for each other’s sake as we propel away from misery and despair. We will survive because we are stronger than we think.
I have found resilience by using a few grappling hooks to keep me tethered and focused on what matters.
The first hook is determining which people I can depend on. As I care for my ailing husband, in turn, I need to be cared for, too. My soul food, along with refills of my emotional tank, come from my children, friends, and faith. When I run dry and there’s little to give, I reach out and ask for help. Support comes in all forms, and it is there when we reach out.
The second hook is focusing on what I can change. Amyloidosis is such a degenerative disease that not a lot can be done to treat the condition once a person develops it. As a carer, I cannot change my husband’s prognosis, but I certainly can change my outlook and expectations.
In a 2008 speech, former President Barack Obama said, “Change will not come if we wait for some other person or if we wait for some other time. We are the ones we’ve been waiting for. We are the change that we seek.” In other words, be the change you want to see.
My last hook is resolving any internal issues. Early on, I kept most of my disappointments and struggles with handling the disease tucked deep in my heart. I worried that confessing them would add more to a cart that was already at its breaking point. But we are not made to ferry such burdens. The stress will bleed through, and there will be casualties when the so-called bomb explodes.
If you are struggling, seek professional counseling or talk to someone who has been through a similar experience. Even superheroes have sidekicks.
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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