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Amyotrophic Lateral Sclerosis (ALS) Message Board
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Old 07-09-2013, 05:22 PM   #1
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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.

 
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Old 07-11-2013, 08:41 AM   #2
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Re: Sister-in-law with ALS

I'm so sorry your sister-in-law has ALS. I am a caregiver and know that it has many challenges. Maybe you could go and relieve your family and take care of her for a week and see if it is possible for her to have outings without too much difficulty. It is difficult when you transfer your loved one into a car and take them out and when they have to go to the bathroom, that is another challenge in a strange place. Maybe you could go slowly and see what you could do to help and relieve them of watching their daughter deteriorate before their eyes. I'm sure you mean well but seeing and being a caregiver 24/7 is a lot of work and they may be exhausted and having an outing is more difficult than you might think. It is good to get a loved one out of the house but maybe small trips here and there or a nice walk in a wheelchair and let them see nature, etc. Best wishes to you and your family.

 
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