I have a rare neurological problem that has a 7 year survival average. I’m in year 7. Long before it ends you theproblem takes away your voice and hand controls. patients can’t communicate with husbands and wives they’ve been with for 25 or more years. (This illness starts after 55 for everyone)
Most people don’t get diagnosed for 5 years. Docs think it’s Parkinson but it’s closer to ALS. I got my diagnosis 2 years ago.
I’ve been on a forum for the caregivers of patients like me for 2 years. As the patient I talk to them about how it feels from the inside so they can perhaps recognize that behavior in their loved one.
I’m down to 1 finger for typing now and I’m still letting them know what’s going on and advising them not to be angry at the times they’ve been too tired or just worn out to do the thing they thought their loved ones needed.
Everyone does their best every moment of every day. Sometimes it doesn’t work the way they think it will or they’re unable to carry out what they intend to do. Sometimes they’re angry. Sometimes they’re sick. Sometimes they’re too tired to help that day. They carry so much guilt… sometimes for the rest of their lives.
I tell them we the patients see that. We understand that whether or not it worked out well, that was their best for that day. We patients say forgive yourself in our heads all the time, but can’t say it out loud. We can’t even signal it with our eyes because the eyes lock up.
It’s my way of assuring them it’s all okay. I’m grateful I’ve been able to do it.
I say to all of you here don’t hold on to past mistakes. Be brave enough to learn the lessons from your history, forgive yourself and move forward. Someone else will need to know what you learned and you can be there for them.