Sister-in-law with ALS
My sister-in-law was diagnosed with ALS about 18 months ago. Her ALS was bulbar onset, so her speech was the first thing affected. She is now in a wheelchair and has a feeding tube, although she can eat soft foods. She does have to be fed - she has no movement of her arms. Her husband and her daughter, who is a teenager, are her main caregivers. My husband (her brother) and I live approximately 1 1/2 hours away, so we aren't involved in her life the way that their parents and her husband and children are. I want to help in any way I can and offer it. My family thinks I come across as being a little pushy because I try to plan outings where we can all be together, such as a baseball game, but her father, who is elderly, feels it is getting to be too much and doesn't want to do it because it requires her to be transported from a car to her wheelchair and she will probably have to use a restroom at some point which will require her being transferred from the wheelchair to the facility. My hope is to give her something to look forward to and a better quality of life. She basically sits in her living room every day and I guess she is sleeping a lot. Because she can't communicate and we live a distance away, I do communicate with her daughter asking if there is any place that they would like to go to or anything they would like to do. My question is, am I wrong? Am I being too pushy? She communicates to her daughter that she wants to go, but my husband gets the feeling that the rest of the family thinks it is too much. I am hoping to hear from people who have ALS and/or caregivers of people with ALS. What have been your experiences? Quality of life is so important to me, but am I pushing my feelings onto others? Thank you.