I became my own favorite caregiver this past weekend when I went to visit a dear dear friend in hospice at John Hopkin’s. In making this visit, despite my caregiver’s emotions, I tried to remain focused on what I could do for the day-to-day caregivers in his life, for him and not on how I was feeling.
You’d think I’d have ready answers to all of my own caregiving questions as a member of the AARP Kitchen Cabinet on Caregiving. There is probably no one source more focused on this topic than AARP’s Caregiving site. But when your own fear of the unknown is involved, it can be hard to think clearly.
I sent out a message to one of my private Facebook groups for fresh ideas on how best to support others during palliative care and they did not fail me. I received a plethora of suggestions ranging from creating a sign for my friend’s hospital room thanking his many visitors to more personal gestures such as offering manicure/pedicures, sitting with love ones, washing clothes, just listening; doing simple repairs around the house (i.e. changing light bulbs, etc.), and praying for their strength.
We drove the 3 hours on a sunny Saturday afternoon to Baltimore. I thought I’d look for vegetable samosas for my friend, something he loves; but the ones he likes were in a hard-to-find Baltimore location. So on the advice of local friends, we headed to Whole Food to pick up Reeds’ Ginger Beer, a blueberry and a cranberry pecan muffin.
I found my friend sitting upright on the side of his bed in the very best of spirits and hallelujah, he was experiencing no pain. For the past 5 years his pain has seemingly been more than a human can bear. In fact he began using a new word, “willology,” to describe the journey he is on. His sheer will to live is what is allowing him to live.
But it is my own emotions I must control. For it is not the stuff of life that matters to my friend. He is a creative soul busy even in the hospital creating music for an independent movie, writing children’s books, and prepping for an event.
Fear of the unknown is crippling. The moral of my day was there is no better antidote for my caregiver emotions than finding a way to show up for my friend with a lifted spirit.
AARP has the most comprehensive resource center at AARP’s Caregiving Resource Center. Follow along on Pinterest: http://pinterest.com/aarp/
I am part of AARP’s kitchen cabinet on caregiving. This is part of a series of posts on the topic of caregiving. Although my social media involvement is compensated, all opinions are my own.
Meredith says
Patricia, I’m proud of your for digging deep to look for ways to best bring joy to your friend. It is very easy to get caught up in our own emotions and be no good to the patient. Palliative care is something I think most of us have a fear of. I had the opportunity to have my Mom placed in an inpatient hospice before she passed. It was so calm, serene & offered her the dignity that had been stolen during prolonged hospitalization. Thanks for sharing your experience.
Patricia A Patton says
The hardest thing is to not think about oneself and really try to be there for your love ones.I know you know. Thank you.
Patricia A Patton says
I was looking around to see if I had answered your message. I am really proud of the work you are doing on EMpoweredmochapatient. So thank you for reading and checking in.
Helene Cohen Bludman says
Bless you, Patricia. I can just imagine how your visit brightened up your friend’s day.
Sienna Jae Fein says
Your willingness to expend precious time to support your friend and to open your heart on his behalf is a gift of the highest order – and one of the most emotionally wrenching. You are an inspiration, Patricia. Bless you for your sensitivity and kindness.
Patricia says
Thanks Sienna. Thank you very much. He really has enlarged my life.
Patricia says
Thanks Helene. He is such a beautiful person.
Patricia A Patton says
Thanks for reading and sharing.