It’s Important for Caregivers to Receive Care, Too
As I write this, my husband is in the hospital due to complications of hereditary ATTR amyloidosis. Aubrey, 58, was diagnosed in 2013, and this nine-year journey has been transformative. We both have learned to adapt to an ever-changing health situation and roll with the times.
In a past column, I described amyloidosis as a vicious beast that clings to its victims tightly with its tentacles. It follows them everywhere they go. Whether they’re asleep or awake, it makes its presence known. This sounds dramatic, but when the beast takes the form of a toxic amyloid protein that deposits itself in and on crucial organs in the body, I can’t find a better way of describing the control amyloidosis has over our lives.
As a caregiver, I witness the enormity of what it’s like to suffer from this disease. I see the toll it takes on my husband physically, mentally, and spiritually. I am there when he grimaces in pain, a spectator to his sadness, and I inherently feel his disappointments.
I say I am a spectator because I’m not prideful enough to claim that I share in his suffering from a terminal condition. It is impossible for anyone but him to fully understand the agony he experiences. I am there to catch him when he falls and fulfill what he tells me to do.
This supportive caregiving position involves a strict set of challenges, but it has also brought intentionality and appreciation into my life. Undoubtedly, the journey has been difficult, but I can carry on because I have faith that if the two of us remain resilient and united, we will brave the storm no matter the trials.
This week, as Aubrey battles for himself in the hospital, I am also facing some health issues that have cropped up unexpectedly. Taking care of myself involves some guilt because, as a caregiver, I never want to be in a position where I need to be cared for. I have become accustomed to ferrying responsibilities, being on top of everything, and being in control should things fall apart. Now that my abilities are somewhat compromised, I must think of a contingency plan.
For starters, I need to acknowledge that it’s OK to ask for help from extended family and close friends. Others can help me by running simple errands on my behalf, walking my dog, or preparing some meals while I’m under the weather. After nine years, I know whom I can count on in times of need. For instance, I know our four children would happily be there for me.
Learning to receive and accept help is a key aspect of self-care as a caregiver. I have to keep in mind that as troublesome as it is to depend on someone else, it’s for the greater good of the person I’m caring for.
When I am compassionate and respectful of my own needs, ultimately, it will impact my husband. The better I care for myself, the sooner I can get back to caring for him.
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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Judy Strasbaugh
Jaime, your strength, commitment, and wisdom are examples to all of us who care for our TTR Amy loved ones. I wish you successful and swift recovery from your health challenges and continued strength and pain relief for Aubrey. Blessings to you.