Advice for the caretakers

I was recently asked by a man who is a primary caretaker for his wife, who suffers from a severe case of CRPS, how he can best support his wife. I found it to be a difficult question to answer, because people are different, and when they are ill, they may have different needs and expectations for their loved ones.

I am asking for help from those who have gone through years of very debilitating conditions: what would be the best way to support a person in this situation? Any words of encouragement, any particular actions? Any suggestions on what caretakers should not be doing?

Many thanks in advance to those who responds!

 

This is a very good question, and something my husband and I go through.
#1: 0 talk about symptoms. Instead it is things like “I notice you are feeling “it” today”.
#2: Do you want me to help? Which I recommend not be used very often, but avoid the word need.
# 3. Give the person who’s being cared for the space to do things independently when they can and brainstorm how to facilitate that together. This is very difficult because it can often upset balance and flow around the home. Eg. My husband would usually cook dinner but we’d try to set me up to cut veggies when I could, and that was a slow process.
#4 Talk about ways to get the necessary help in ways that puts less onus on the caregiver and less strain on the relationship eg. Hire cleaners if possible, hire someone to do the lawn - the caregiver can use that time for self-care. They need care too!
#5 is a big one - do not make judgements about what the person you care for can and can not do eg: are you sure you should be lifting that? Or “ be careful!!” (We are still working on this).
#6 help set up a private space for meditation and/or journaling that is a respected private place: even a chair in a corner. A safe and cozy place. Perhaps you can each find such a space.
#7 Encourage movement - anything! We started by doing laps around the house and made it fun: playing music, having a parade (with our cats). This process was so stressful and joyless we tried any way we could to be more fun. #8 honesty! Talk about the challenges, and about the actual time you have. I could only expect so much, he could only give so much and the rest we couldn’t worry about for a while which meant I missed many meals, didn’t always bathe regularly etc. but it was temporary.