Thoughts on being a Caregiver

BY Vinny Petrocelli, Edited by Barbara Bigleow


Last week we were fortunate to hear from Karin Petrocelli and her passion for fund raising for Metavivor. Karin entered hospice in December 2019 with the support of her beautiful daughters and husband Vinnie. This week we are again fortunate to hear from her husband Vinnie about care giving and what he has learned in recent years from his partnership with Karin, a true letter of love.
                                                                                            Barbara Bigelow, Editor


Thoughts on being a Caregiver by Vinny Petrocelli

First; no matter what being a caregiver to a loved-one entails, it’s not about the caregiver. It’s about the one for which you are caring.

Being a Caregiver for my wife Karin Petrocelli, who was diagnosed with stage IV metastatic breast cancer in 2012, is a role I never asked for. It’s a role that, despite how well I do or how many accolades I receive for being “so good” at it, I would do anything to never be in again. It’s not because I don’t want to be Karin’s Caregiver. In fact, since her diagnosis, it’s just about the only thing that matters to me, and that I want to be good at. It is because Karin’s diagnosis means that I have limited time with her, and I want as many tomorrows with her as possible.

For nearly eight years, I  have taken Karin to chemo and radiation treatments, doctors’ appointments, scans and tests. I’ve cooked, cleaned and fluffed her pillow. For the previous 22 years of our marriage, as well as the eight years since her diagnosis, Karin has cooked, cleaned, done laundry, scrubbed floors, cleaned the grout, dusted, organized the garage, paid the bills, painted rooms, took me to my doctor’s appointments, tests and scans, and did way too many other things to list here…but never fluffed my pillow.

The real difference is that since her diagnosis, we’ve both known there would be an awful, final outcome. So being Karin’s caregiver is the most important role I’ve ever had to fill. To me, it means that her needs will always come first, because that’s the way I want it and the way it should be.

As Karin’s main caregiver, (and there are many others who are caregivers to Karin as well) I choose to focus on helping to make Karin’s remaining time the best it can be. Often that means ensuring that we continue living life as normally as possible. We continue to go on vacations, spend time with our family and friends, plan for the future, and live our lives without constantly focusing on her diagnosis. Sadly, no matter how much we try to focus on the “normal”, cancer is always lingering in the back of our minds. My advice is to try to keep it there as best you can without ignoring the realities of your loved one’s struggle.

Being the best caregiver that your loved-one deserves is not easy. I’ve made a list of things that you can do to be the best caregiver, because your loved one deserves the best from you. The list is based on things I’ve done well, as well as things I should’ve done better. This is a way for other caregivers to learn from the good I’ve done, as well as from the ways I’ve failed.

  • Make sure he/she knows that you are in it together.
  • Don’t be an observer, be an active partner.
  • Educate yourself about his/her condition.
  • Let your loved one know that he/she is not a statistic, but an amazing person with her/his own unique strength and coping mechanisms.
  • When you go to doctor’s appointments
    • Ask questions
    • Take notes, (mental and written)
    • Hold hands
    • Remember that however hard it is for you to hear what the doctor has to say, it’s harder for your loved one.
  • Don’t complain about how often you have to take her to her appointments, or how far away they are.
  • Make sure that he/she knows that the treatment routine is not an inconvenience to you. (Because in every instance, it’s much worse for him/her.)
  • Be prepared to feel useless because you can’t “fix it”. But know that without you, it will be way more difficult for your loved one.
  • Don’t feel guilty for being sad, depressed or for worrying about your future. Whatever he/she’s going through, you’re going through together. You’re watching someone you love suffer, and you can’t make it better. It is the hardest thing you’ll ever do. If you don’t get sad, depressed or worried about your future, that’s when you should be concerned.
  • Listen way more than you talk. With the exception of Vincent Van Gogh, we all have two ears and one mouth, meaning listen more, talk less.
  • Never assume that you’ll have tomorrow to tell your partner that they are the most amazing person you’ve ever known, how much you love him/her, and that no one will ever replace him/her.
  • And most importantly, be the caregiver that he/she needs, not the one you think is needed.

Being a caregiver means giving care. Do that. It also means that you are going through something that’s devastating not just to your loved one, but to you as well. Don’t be afraid to reach out to others to help you get through it. Talk to other caregivers. Find an online support group for ideas and support. Just as your loved-one needs your support; you need support as well. It doesn’t mean you’re weak or incapable. It means that the better you are as a caregiver, the better you’ll be able to take care of your loved-one. And that’s all that really matters.

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