Staying Hopeful as a Caregiver While Confronting the Important Issues
This is my 48th column since I began this providential opportunity as a writer at FAP News Today. To be given the platform to share my journey as a caregiver to a husband who is afflicted with hATTR amyloidosis is humbling and cathartic.
Life as a caregiver has its ups and downs, so when I say that writing this column has been cathartic, I don’t mean that I deem this as an outlet to vent my frustrations and grievances. Instead, I view what I have to say as more like me bringing my plate to the table, joining other caregivers and sufferers in partaking of a platter filled with similar trials, tribulations, encounters, and our own forbearances.
But what I write about is just a tiny drop in the sea of experience. I am an hATTR amyloidosis caregiver, but I am also a patient advocate, and that allows me the opportunity to meet and talk with so many other exceptional people who do so much to help and protect their loved ones who are unwell. Because November is National Family Caregivers Month, I want to take this time to acknowledge the tireless contribution others like me have made in the name of love.
Having a rare condition is not as simple as walking down to the neighborhood pharmacy and buying an over-the-counter medicine to get better. There are so many other things to consider, including having to eventually acknowledge the possible outcome of a loved one losing their life. Treatment options are limited with hATTR amyloidosis and are often very hard to come by, depending on where a patient lives. The decline in a patient’s health and overall quality of life becomes so dreadful that it can be challenging to stay positive and hopeful.
hATTR amyloidosis caregivers stand next to the afflicted, wanting to take on some of the pain, but are often left feeling incompetent. Our immediate reaction is to help, but therein lies the problem. There’s not much we can do to make the pain go away, but we don’t want those we are caring for to stop telling us what they need. We ask for their patience; we can at least help them to feel better if they let us. We also face untold anguish, knowing that we may lose our loved one at any time.
In the absence of treatment, both the sufferer and the carer will eventually need to confront the issue of end of life. This is a topic I avoid thinking about because it is too painful and feels hopeless. Nonetheless, I know my husband, Aubrey, and I will both need to cross the bridge of palliative care sooner or later. But when should we talk about it? Talking about preparing for death, planning how best to use the remaining time, about what legacy to leave behind, about forgiveness being asked for and offered — these can be complicated items to tackle and require a tender approach for all involved.
J.R.R. Tolkien wrote the following: “End? No, the journey doesn’t end here. Death is just another path. One that we all must take.” I want to believe what Tolkein said, that there exists another place where we will be able to meet our loved ones again. That when the time comes to part, it will be a short goodbye.
But neither of us are resigned to this fate. We will both keep fighting to live. We all should.
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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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