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Caregiving for CF

Caregivers can be spouses, partners, families, friends or anyone who takes on an unpaid caring role for someone who needs help because of a physical or cognitive condition, an injury or a chronic illness. Since caregiving is not an exact science and a learning experience between the person who needs care and the person providing it, we’ve asked to our community members what being a good caregiver for people living with CF means to them. Here is what they said:

– “Being any caregiver takes patience, empathy, and self-care in order to prevent burn out. Being a caregiver to someone with CF in particular, takes an enormous amount of compassion and understanding as well. Being able to adapt and roll with the punches CF can toss you is basically essential. I can’t tell you how many times my husband has had to cancel his plans because I got sick and needed help. I think as patients, recognizing the importance of making sure your caregiver is taking care of themselves is just as important.” – Kim Wood

– “My wife of almost 22 years is my caregiver. My wonderful and loving mother was before that (and still is). My wife Susan and I met in our teens and have grown up together. She understands not only the intricacies of my care but the intricacies as they evolve with changes in my health. We work as a team. Each night I lay my head and simply ask myself; “Did I try my best today?” I hope and believe I will continue to try my hardest, even when tasks that were once so simple become so immeasurably hard. I have promised my beautiful and heroic wife that I will not give up. I will give my all because it is all I can give. So I lay my head each night and answer “yes” to myself and know that we will continue to work together. My frustrations about Susan doing more than her share are finally relenting. There were so many things I enjoyed doing for her that I can no longer do. This is hard for me. There has been a paradigm shift in my attitude toward her increased workload – I more readily say thank you than I do I’m sorry. She does the things she can, not those she can’t. Like me.  She cannot do the vast array of medication deliveries or physiotherapy or exercise I must do for myself. It is sometimes difficult to accept that this is my life, but it is not just mine, it is ours.  So we work together – we are a team.” – Alex McCombes

– “A great caregiver is someone one who will listen to you at your best, and more importantly when you are at your worst. Sometimes you just need to vent, let off steam, cry, scream, stomp your feet, hold a pity party…and then move on!  Those that know us best get this and are the ones who are there for us…no matter what. To the CF caregivers out there, thank you for all that you do, for all that you put up with and for always being there.  You are appreciated more than you will ever know!” – Brenda Chambers-Ivey

– “Understanding is the best feature for a CF caregiver to have. Willingness to help or take over when needed is great.” – Jess Best


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