Caring for the vulnerable is good work. When caring for someone in your home, perhaps a family member, that good work is harder because it’s never ending.
To make your situation sustainable, you could:
Prioritize your sick person’s requirements. For example, using disposable items or letting some chores wait.
Make time for yourself to de-stress, sit outside, take a bath.
Get help a few days a week. When you’re confident in their sensitivity to the situation, you can leave for a break.
Create routines to avoid wasting time. Have a process for sorting pills into time-of-day/day-of-week containers. Have supplies you regularly use organized and easy to access.
Avoid burnout by learning what is urgent and what can wait a few minutes. Everything is not an emergency.
Seek support, whether a therapist or a trusted friend. Your situation is traumatic and you need to grieve the loss of your normal life as much as your sick person does.
In this video, you’ll learn a bit of what it’s like to care for someone who’s 100% bedridden.
The focus is on self care and avoiding burnout.
The goal is to support you as you navigate the traumatic situation of caring for someone so utterly helpless and dependent on you.
Video is 4:48 Minutes
The extra care you show, the extra details like preparing delicious food or putting flowers in their room, will not encourage someone to stay sick. “Enabling” does not apply to people with severe ME or long COVID. Your person is suffering terribly and extra kindness will not hurt them. Your love breaks through their isolation and helps them survive another day of suffering.
Video is 3:14 Minutes
One of the greatest fears that people with severe ME express, is that they are too much of a burden for their caregiver. This video will help both the caregiver and their sick loved one to think differently about the hard work and the sacrifices required to care for someone so vulnerable.
Video is 5:29 Minutes
In this image you can see some of the accommodations necessary to protect James who has severe ME.
Download a flyer of this blog post with links to the videos embedded.
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