Kidney
Ideas and top tips for comforting your patient (as a care partner?)
As a care partner, I struggle to know how to best express my support and empathy when I know my partner is in pain / uncomfortable. Any tips from others?
TransplantLyfe Favorite
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Hi @lescp3! I agree with @Karin - it's important to let us know that you're there for support, without it feeling too overbearing. I find it nice when friends or family just send a general "hey how are you?" text - something they would send to anyone, patient or not - versus highlighting the fact that I am a patient with a "how are you feeling today?" - for some reason this always makes me feel like people view me as "sick" or "vulnerable" instead of a typical family member/friend. A general text lets me know that you're thinking of me, but also not harping on the fact that I'm a transplant patient, just a normal friend :)
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Transplant Patient
Such a great question - if you are too doting we feel overly protected and even suffocated but if you ignore us we feel that you don’t care! I guess the best is to really try to listen to signs and allowing the patient to communicate both openly and silently if that makes sense. Being there for us and being patient when behavior sometimes is “poor” due to other reasons than you may see is key. Thank you for being a good friend to so many :-)
This is super helpful. Thank you for sharing this advice.
I had no idea "how are you feeling today" might imply the patient/sickness angle - THANKS for sharing!!!! And you are right - has anyone EVER been sad to receive a "how are you?" note anytime anyday?? Thanks for the reminder.
Transplant Patient
@lescp3 you are one of those people who actually do ask “how are you” although you are not even seeing (or in contact) the person that day - and you do it regularly. Thank you for that
Transplant Patient
For me, having people do tangible things was really helpful. Not necessarily "sick people" things like cleaning my house or cooking meals for me, but when a friend would drop a coffee off at my doorstep, or my sister in law sent me bath bombs she saw and thought of me. I'm a physical person so i liked having something tangible, and not having to ask for it. Also this is harder with Covid and depending on your relationship with the person, but physical touch from my partner meant so much to me. Even if he just held my hand, that to me conveyed support
These are great ideas - thank you for these great ideas!
Such a wonderful question! I always like to just know I was heard. I feel like as professional patients we know our family and friends cannot do anything to take the discomfort away. We just need to talk about. I never want anyone to feel sad for me or feel I am a burden that they need to stop their life for me. I just always want to still feel apart of everyone's life and not a glass doll. I still love being invited places but have everyone understand when I cannot go (pre-covid). When I am not feeling well just a little something like a little bowl of my favorite ice cream or a cup of tea or just cuddles mean the world to me. 💗
Thanks so much for this insight Jeanmarie. We care partners feel helpless and it is great to hear how we can help in ANY way to lessen the emotional burden of our loved ones. Ice cream...well noted!!!
Transplant Patient
@Jeanmarie i agree - being heard and not judged and sometimes not even “helped” / helps a lot!
For me this is one is challenging because I have my dad and then my sister. My sister is more day to day involved, and for her I think it becomes about taking her mind off things going on with me. Like this past weekend, I went over to her place, and we got distracted by binging on Parks and Rec, watching the Eagles game, renting some movies, etc. We focused on her as well, and what's going on in her life. She just got a new car, so we took it for a spin and she gets excited by that. Not sure if that all makes sense.
Yes @mikem it DOES make sense. Seems like you enjoy just doing fun everyday things and hanging out!! ENJOY - so lucky to have a fun sibling :)
Transplant Patient
@JimGleason that is so wise - I think you are right in staying that we don’t always need advice and fixes - but just be allowed to speak...
This is such great advice - thank you for sharing. Listening without trying to solve is a challenge for me (as a woman too :) But very valuable insights. Thank you!!
Transplant Patient
@lescp3 hard for me too and hard as the person with issues to not have answers or a plan, but i try to focus on the NOW as much as possible and during covid that has really helped me a lot!