Feeling at Home at the Hospital

Jaime Christmas avatar

by Jaime Christmas |

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As a caregiver to a spouse with hereditary ATTR amyloidosis, I’ve become familiar with our local hospital. The countless appointments and stays that Aubrey, my husband, has endured since diagnosis in 2013 have allowed me the opportunity to roam the building and acquaint myself with the layout of the place. Ask me where you can get the best flat white coffee, which nook is best to make a phone call, where the chapel is for some quiet time with God, how to get to the closest car park, where the food kiosks are, or which floor has the free hot drink machine, and I can tell you or walk you there.

In the earlier years, however, when Aubrey would go into the hospital for a routine checkup, entering the hospital grounds and walking into the building itself would fill me with dread and apprehension. My hands would get clammy, and I felt very uncomfortable.

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As a young child, I remember going to a hospital in Malaysia, where I grew up, to see my father, who had just had surgery. He was there for an appendectomy, which these days is routine, although not without risks. But when you’re an 8-year-old, the sights and sounds of a patient ward are frightening. The experience of seeing your dad in pain — and others, since it was a shared ward without curtains — stays with you. I recall crying profusely at the sight of my beloved dad in pain and not wanting to leave him alone.

My child brain must have found this extraordinarily traumatic, because stepping into a ward again with my husband instinctively brought back the smell of antiseptic, the feeling of trepidation, and the anticipation of loss.

These days, I’ve outgrown that stress. I’ve had time since 2013. Through the extended hospital stays, I’ve come to terms with the dynamics of the place. With each treatment Aubrey receives, the variable tapestry of therapy becomes more complex. The common thread that binds us, as caregivers to loved ones with amyloidosis, may well be this rite of passage that we must all face: to become comfortable with the hospital.

From experience, my well-being as a caregiver while visiting my husband is as important as his comfort. Since he’s a patient admitted into the ward, his needs should already be taken care of by the medical staff. As someone visiting and spending time with him, I cannot expect the nurse or doctor to make sure that I’m happy to be there.

Hence, when I’m with him in the hospital, I pack enough supplies to keep me occupied for the day. I carry a bag with several things, such as card or board games, a phone charger extension, a crossword puzzle book, snacks, and sometimes a home-cooked meal for myself or for him. It ensures that I feel at home even though I am in the hospital with Aubrey.

We are both here for the long haul with this disease, and hospital stays are part of living with the condition. We need to be able to embrace the situation and find contentment in every aspect of the journey.

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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