Cystic Fibrosis News Today Forums Forums Support Groups Friends and Family What’s Your Caretaker Experience?

  • What’s Your Caretaker Experience?

    Posted by bailey-anne-vincent on July 9, 2020 at 10:24 am

    Have you ever had to be a caretaker?

    My partner has had two oral surgeries in the last two weeks and I’ve been a complete nut about taking care of him. I’ve lost sleep. I made him a schedule of meds and hung it on the fridge. I’m tracking his progress more diligently than either of us have ever thought about my own antibiotics or treatments or surgeries (lol).

    I posted a video on my Instagram about how much appreciation I have for caretakers… but I was wondering how many patients have had to be both?

    tim-blowfield replied 3 years, 8 months ago 3 Members · 2 Replies
  • 2 Replies
  • jenny-livingston

    Member
    July 10, 2020 at 10:15 am

    Oh, Bailey, I love this! The only times I’ve had to be a care partner (a phrase I learned on your IG post) are following a shoulder surgery my partner had and, of course, when my daughter has been sick or had minor procedures. Like you, I get pretty intense! Hah!

    In a way it’s nice to be there for someone else, but it also gives me a tiny glimpse into what my caretakers must experience… eeshk. It’s not easy! I’ve always said I’d rather be the person in a hospital bed than the person standing next to it.

  • tim-blowfield

    Member
    August 6, 2020 at 9:31 pm

    I just prefer to use the term CARER. In Australia it does have an official recognition – can get a small fortnighly allowance from the Govt to help with expenses, a card to say you are a carer and a few other perks but it is small *** for sitting for ours beside your partner supporting her in hospital, advocating for her when treatment is suboptimal (we had a problem with Potassium supplementation which led to serious hypokalaemia), searching for answers when nothing adds up, not just while in hospital but day-in day-out, trying to understand her CF of which so many Doctors have no or very limited understanding. Supporting the cared person when they need it and so much else. It is a full time job. I have tried to get a wider understanding of CF as we realised that her heart failure (cardiomyopathy), endocrine (Parathyroid and Adrenal)problems, Sjogrens Syndrome (dry eyes, dry mouth – dental issues, polymyalgias), vasculitis and clotting issues are all almost certainly the result of that faulty Chloride transport that occurs in CF. CF is a very complex disability!

Log in to reply.