Reply To: Being a caregiver when you live with pain

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#22152
FredFriend
Participant

A couple of months ago, I spent 4 weeks sitting with a dear friend while she was in the hospital. Everyday I was there for 7 to 12 hours depending on the schedules of other friends and family who were rotating in to make sure that she was never alone. It felt good to be of service. It felt good to help my dear friend whom I’ve loved for decades. She had ALS and passed away earlier this week.

It wasn’t physically demanding. It was a matter of making sure that her communication tools were close at hand since she was not able to speak on her own. She had a very cool computer that utilized eye-gaze technology for her to type out messages that the computer would speak or she could email to folks. I was there to take notes, wipe her tears, make her smile, make her laugh. We discussed pain care, hospitals, healthcare, end of life decisions and current events. We pretty much solved all the problems in the world.

It was a great relief when she was finally discharged and went home to her accessible cottage with 24/7 caregivers. She spent her final 10 weeks inviting friends and family for a few hours visit at a time. Making connections, encouraging each of us in our endeavors. Her sister and her daughter were by her side every moment making the most of their time together. Through it all her eyes sparkled and her smile lit up the room. She was in control and she made all of her own care decisions.

I’m grateful that I was able to play some small positive part in her journey.