One of the most common issues I hear about from other caregivers (CALS) of people with ALS (PALS) is that friends and family disappear, leaving them to live through this hell alone. I have heard about parents who stop visiting or even calling, of siblings that refuse to answer the phone, of children who refuse to help out, of people who say “let me know if you need anything” but who are not there when you need them.
We had been in our new home for less than 18 months when Mary was diagnosed. In that time, we had developed a close friendship with a neighbor – we spent several nights a week together having dinner, drinks, talking smack. We had helped each other out with projects and with difficult life events.
Soon after Mary was diagnosed, this neighbor helped immensely by repairing the door that the sheriff had kicked in the first time Mary fell and was alone. They made and installed a ramp for the one step on our ground floor, allowing Mary to maneuver her power wheelchair from the entrance and master bedroom to the rest of the house.
Then they stopped answering my calls and texts. They stopped waving at me or even looking at me when I drove past. Mary would ask me to contact them and ask for something, and there would be no answer. It broke my heart. It made me beyond angry. This person knew that we had no family or close friends in the area, that there was no one else nearby to help or visit. They never checked in when the fire department came by in the middle of the night.
A childhood friend of Mary’s refused to come down and visit, saying, “I want to remember Mary as she was.” How nice to have that luxury, to use that excuse not to give her the human connection she craved.
I know it is fear that kept these and others away. Please look beyond your fear and think about the person with a terminal illness and the ones taking care of them. They need you. They need “normal” to visit once in a while. PALS need to reminisce. CALS need someone trusted to talk to about their fears and struggles. PALS need you to sit with them for an hour or two so their CALS can take a nap, or a shower, or go to the grocery store. They need you to mow the lawn, bring a cooked meal, take out the garbage because they cannot leave their PALS alone.
The Human Connection. It is Everything.