Hi @merine I am sorry for the delay in responding, but I had my entire post written to you and the system ‘burped’ and ate it! So here is try #2!
Thank you for your kind words. I wish I had some knowledge of your Topotecan, but I am not at all familiar with it. I’ve thought about advice I might give your husband and again, no magic words, but just my thoughts on caregiving.
First, I’d tell him superheroes only exist in comic books. Not in caregiving! None of us can do it alone or do it all. We can only do the best we can with what energy, abilities, etc. we each have. My wife and I talked about how we could simplify our lives and did so. We agreed there would be some things in our lives that would become ‘good enough’! Meals got simplified, laundry was OK in piles, focus was on what my wife needed (nightgowns, clean sheets, towels, etc.) and the rest could wait. Dirty dishes could sleep an extra day/night in the sink without regret. Dust bunnies became our accepted pets, etc. We agreed to spend our time on those things we cherished the most – two best friends, tea times together, her daily favorite word game in the morning, watching the birds at our feeder, and the deer in the yard. When her abilities changed our chant was ‘it is what it is’ and moved forward rather than looking back at what was lost. We added a bit of humor. I posted a sign at her wheelchair ramp and called it “Mr. Toad’s Wild Ride” from Disney. She named her cane ‘Her-icane’ and I taped it on! When she could no longer manage both lunch and dinner in a day we ate “Linner” once a day. As I often said to my wife, too, she had the truly tough part of the journey so I tried to see life from her perspective and not mine. That said, there were also times when tempers grew short, flared, and when the pain and anger got overwhelming. We worked hard to accept those times. I also tried very hard to eliminate the words doubt, anxiety, regret, etc. Impossible to totally jettison, but I know they serve no healthy purpose in caregiving. Perfection is not a caregiving option for those of us who are merely human!
I appreciated a book by James E. Miller. Half is titled “When You’re the Caregiver: 12 Things to do if Someone you care for is Ill or Incapacitated”. The other half is titled “When You’re Ill or Incapacitated: 12 Things to Remember In Times of Sickness, Injury, or Disability”. By Willowgreen Publishing, I got it free from the cancer library at Mayo Clinic, Minnesota.
Please let me know of any more questions you might have or if your husband has any!
Strength, courage, and peace