Don't tell a caregiver to stay positiv... - Melanoma Caregivers

Melanoma Caregivers

Don't tell a caregiver to stay positive: here's how to help instead

missyrand profile image
missyrandAmbassador
2 Replies

time.com/5944624/how-to-hel...

Preach it sister is my response.

What has been "help" for you in your caregiver role?

Here are things that were helpful to us:

1. texts, cards in the mail, that were thoughtful, funny, and didn't require a response

2. Mealtrain/ UberEats gift cards (I'm still using these)

3. My sister's sent us financial support for a cleaning service for a coupld of months

4. Our dear friends offered for us to stay at their house when we had to travel for the clinical trial, strongly encouraged and enabled our kids to visit with us there, gave me a key to come and go at all hours of the night/ day for the clinical trial duration when Wayne was in hospital having a meal at the ready for whenever I showed up with a glass of wine. They also kept half and half in the fridge for my cups of tea. I had access to wash clothes at any hour, and they allowed our cat Miss Scarlett to also stay in the house with me. She provided essential comfort and we didn't have to arrange for a month of cat sitting in our absence, which would have traumatized her.

5. Prayers for us at our church.

6. Pastoral communications to send updates to our church, including that if Wayne had a hat on in church, he could not be touched as his immune system was in recovery.

7. Donations to the Melanoma Research Foundation in honor of Wayne so more research and treatment could continue in the pipeline.

8. I hope this doesn't offend, but a delivery of 50 #FuckCancer barf bags made our day, and wound up useful in the car and home. We also distributed some in celebration of the third year anniversary of our support group.

9. Sending out group updates so we didn't have to talk on the phone to folks who clearly love and care for us, but it is exhausting. We always waited a few days after scans/ updates to process for ourselves before sharing with others.

10. Cheese, crackers and a glass of wine on our neighbor's deck.

11. Our bandmate being super flexible to drive the 1.5 hours to us when we were too tired to drive up there.

12. Kids initiating calls/ texts to us to tell us the regular parts of their life instead of us initiating the calls.

13. Electronic books from the library and books shared after a friend read it and thought we would like to read it, too.

14. Small group of intimate friends who came to hospital, planned, for specific visiting with Wayne in hospital so I could take a walk and eat downstairs. Asking before they came if there was a meal/ book/ magazine/ chai tea they could bring me even if they couldn't visit. And calling before they came to see if the day/ time was still good because each day was unpredictable in the Trial.

15. The Tomato Fairy. The neighbor with the rooftop deck grows herbs and tomatoes. I'd look ouside my door and there would be fresh picked treats waiting.

16. Invitations to be with family for a fun activity we didn't have to plan for, cook for, or clean up.

17. Game night with friends

18. Someone else to put up and take down the Christmas Tree

19. Someone else to make sure folks were greeted, fed, shared an update, started a list of tasks once Wayne died, started the obit draft, offered to stay with me if I wanted it, and graciously left me quietly alone when I asked for it.

20. Assistance with notifying others of Wayne's death

21. I wish I'd asked for help to address sympathy acknowledgement cards.

22. Offers to help go through personal clothing together after a death, down the line.

23. Offer to go with to the funeral home and to collect ashes.

23. Technology consultations offered for items Wayne had more proficiency with.

24. Invitation for lunch to talk through what to expect for probate

25. Small items of comfort like lavendar scented hand lotion, personal sized kleenex, packets of glasses cleaner, mouth lozenges for immunotherapy dry mouth, chapstick/tubed vasaline, a journal (Wayne always had this with him)

26. If we still had a house instead of a condo, leaf raking and grass cutting would have been helpful

What has touched you/ helped? What has not?

peace,

Missy

Written by
missyrand profile image
missyrand
Ambassador
To view profiles and participate in discussions please or .
Read more about...
2 Replies
HSsweetheart profile image
HSsweetheart

Very thoughtful; thanks for sharing.

surviveandthrive profile image
surviveandthrive

thanks for sharing this missy. so great connecting in DC, looking forward to being able to do it again soon. sending you love and light.

i have embraced a few mantras during this time:

say yes to help...we are lucky to have a village to help with the kids, drop off food and much more

this isnt a secret, it is our life...we share our story in hopes that it will help one person. we openly encourage others to get skin checks. we welcome when a friend reaches out to us and asks if they can connect us with their recently diagnosed friend/family member.

embrace the time together...pre covid my husband and i made dates of his treatment dates, scans and doctors appointments. we enjoyed the time together in the car without kids, went to appointments early and grabbed a nice lunch, didnt rush home and enjoyed a coffee.

thankful for friends reaching out...many people are nervous to reach out as they dont knwo what to say so i tell them there is no right/wrong thing to say and we appreciate them thinking of us, let them know i may not respond to their text or call, be okay with calling them and just crying

and some advice i share

get a first, second and third opinion...you wont hurt your doctor's feelings

clinical trials arent everywhere and are different at every hospital...ask around

You may also like...

Return to Work blessing

confident Wayne is good on his own at home with a lovely meal made by one of our church friends....