BlueK58
Member
- Joined
- Jun 18, 2013
- Messages
- 25
- Reason
- Loved one DX
- Diagnosis
- 06/2009
- Country
- US
- State
- MA
- City
- Westfield
Posted a few times about frustration and problems and just wanted to say something nice
Have a nurse and aid from hospice who come 2x a week to the house. Probably 2 of the kindest considerate people! Always have a great sense of humor and treat my mother and family with respect and courtesy. Always call and are on time. We got so lucky
My friends are amazing and know I can only hang out a few times a month. They are so accommodating. I left work for my PAL and have been fighting with unemployment for months. They arrange to make dinner at home and invite a few friends over so we can all catch up without spending big $$ on a dinner. They offer to come hang out with my PAL and I for a hour or so.
My canadian neighbors! (well they used to live in canada and I always forget their names lol). Just show up and plow our driveway in the winter, stop by with some food or chat for a few min. I don't know them too well but they are incredibly kind and understand that our lives revolve around our PAL. The lady is a nurse and she understands ALS, she is genuinely kind.
Most importantly, my Father
He does so much and never complains. I don't know how he does it. Makes sure my mom is always making HER OWN choices and has what she needs. plus does all the other "dad" stuff. Really lucked out with my parents
last, my PAL! Mom. She drives me absolutely insane sometimes but she is my best friend. Still makes jokes on her dynavox and gives me advice or yells at me LOL. Still gets worried and tells me what to take if i look sick. Tells me how to cook things too lol. Most days she is so tired and cannot communicate but she has her moments where she is still my old mom and i love that.
ALS sucks, bottom line. So easy to get down because there is so much thrown at us everyday. Its incredibly difficult to see any positives but there are some. I fight with my family EVERY DAY but 10 min later we are helping one another to get things done. Nowhere near perfect but I am damn lucky
Have a nurse and aid from hospice who come 2x a week to the house. Probably 2 of the kindest considerate people! Always have a great sense of humor and treat my mother and family with respect and courtesy. Always call and are on time. We got so lucky
My friends are amazing and know I can only hang out a few times a month. They are so accommodating. I left work for my PAL and have been fighting with unemployment for months. They arrange to make dinner at home and invite a few friends over so we can all catch up without spending big $$ on a dinner. They offer to come hang out with my PAL and I for a hour or so.
My canadian neighbors! (well they used to live in canada and I always forget their names lol). Just show up and plow our driveway in the winter, stop by with some food or chat for a few min. I don't know them too well but they are incredibly kind and understand that our lives revolve around our PAL. The lady is a nurse and she understands ALS, she is genuinely kind.
Most importantly, my Father
He does so much and never complains. I don't know how he does it. Makes sure my mom is always making HER OWN choices and has what she needs. plus does all the other "dad" stuff. Really lucked out with my parents
last, my PAL! Mom. She drives me absolutely insane sometimes but she is my best friend. Still makes jokes on her dynavox and gives me advice or yells at me LOL. Still gets worried and tells me what to take if i look sick. Tells me how to cook things too lol. Most days she is so tired and cannot communicate but she has her moments where she is still my old mom and i love that.
ALS sucks, bottom line. So easy to get down because there is so much thrown at us everyday. Its incredibly difficult to see any positives but there are some. I fight with my family EVERY DAY but 10 min later we are helping one another to get things done. Nowhere near perfect but I am damn lucky
