Ways to offer the gift of respite to a hemophilia caregiver
Breaks shouldn't be optional for those watching over the chronically ill
The summer months bring relentless heat. In the desert of New Mexico, where we live, the thermometer often hits triple digits. While some people love the heat, others tolerate it, seeking shelter in the shade of a tree or in an air-conditioned area. Staying cool isn’t just a luxury; it’s a matter of survival.
The moment of escaping the heat into the cool brings more than physical relief. It’s a moment of sacred pause. The body relaxes, shoulders soften, and headaches begin to lessen. The best part is when the cool tingles against damp skin. In that moment of respite, the unrelenting heat gives way to calm.
Just as we all seek shade in the desert heat, our bodies also need respite in the never-ending desert of caregiving. It’s a shared experience, a universal truth that we all need a break from time to time.
In my role as a hospice chaplain, patients and their families have the opportunity to use respite care every three months. A patient goes from home to a nursing facility for five days to receive 24/7 care. That allows the family and caregivers to have a much-needed break. But many refuse respite care because it feels like they’re abandoning their loved ones.
Taking a moment to rest is critical. Whether five days or a few hours, finding some moments of peace is crucial for sustaining the energy, compassion, and presence required in caregiving.
When raising a child with hemophilia, there are times when the disease is well-managed and complications such as joint bleeds aren’t present. However, when your child is having repeated joint bleeds or pain that’s difficult to manage, caregiving becomes more intense and stressful. I understand this situation well.
The gift of time away from caregiving
I have two sons with severe hemophilia with inhibitors who are now grown men caring for themselves. But I remember the times my youngest son spent weeks and months in and out of the hospital while in second grade. This period was exhausting. When he was allowed to come home, the stress increased as my husband and I often had to infuse our son every two hours. This level of care took a toll on me and the family.
Respite looked different during those days. I would’ve never imagined leaving my son at the hospital without me or my husband present. So we devised a plan to allow each of us to have some moments of rest. We decided that we’d never stay overnight at the hospital for more than three consecutive days and nights.
That was difficult for me as I didn’t want to leave my son. But when I adhered to the plan, I was surprised at how desperately I needed a few nights strung together to breathe.
Friends and family members can also play a crucial role in providing respite care. Simple acts of kindness, such as offering to wash clothes or clean the house, can make a significant difference. I remember a friend who did this for us. Walking into my home with the smell of the cleaner Fabuloso permeating each room and clean clothes folded on my bed was one of the best gifts I’ve ever received. It’s these acts of kindness that can bring much-needed relief to caregivers.
Even today, when I smell Fabuloso, I smile.
If you have friends who are caregivers, offer to bring dinner to the house or hospital. One less night of cooking or planning a meal brings a great moment of respite. Sit with the loved one who’s confined to bed or the sofa. Watch a movie and bring popcorn so parents can sleep or spend time together. Small acts of kindness go a long way for a weary caregiver.
These simple examples of respite are ways of helping people reduce caregiver burnout. Taking a break from responsibilities is a way for people to prioritize themselves, physically and emotionally. When that happens, their overall well-being can improve.
An errand, a clean house, or the gift of time can feel like the tingle of coolness on damp skin. One simple act can bring moments of respite that friends or family, knee-deep in caregiving, will cherish.
Note: Hemophilia 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 another 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 Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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