- Jul 4, 2017
- Friend was DX
Hello. Im writing here bc our dear friend is in his 2nd year post bulbar als diagnosis. His condition is deteriorating - does it matter if it is rapid or slow ? Either way is horrific for him and his family. He is physically "able" but has lost his ability to speak and eat. He has a feeding tube. He communicates with a text app and a text to voice app. Fortunatley he has maintained mobility in his hands/fingers. He his wife and their son are the "goodest" people I've ever known. I ventured into this site in the hopes of understanding even a Tiny bit of what they endure every day and how my family can be supportive without being a drain or making them feel as though they need to appreciate or expend energy on us. I know that everyday is a struggle. And yet- he, his wife and son manage to find joy in the tiniest of moments. Anyway - we want them to know that we will be th re to support them all in whatever capacity they need without being over bearing or tiring for them. What can we do and Say in the coming months and years to not only let them know that we care and will support them but also show them? Is dropping meals at their home for her and their son helpful or intrusive? We've offered to have their son spend weekend with us (our sons are friends) but I also realize that they want to have precious time together while he is mobile and physically "able". Is asking to make plans to be with them supportive or a burden? Please let me know any suggestions. I don't want them to feel alone - but I also realize that they must be ultimately - bc who could fathom what they face? They are private people - and we want to find a balance between respecting their privacy and letting them feel just a little bit less alone in this struggle .... thanks in advance for your insights. Wanting to be a true friend.