Summer07
New member
- Joined
- Jul 24, 2007
- Messages
- 2
- Reason
- CALS
- Country
- Finland
- State
- Finland
- City
- Helsinki
Dear everyone,
I'm so glad I found this forum -- since doing so a couple of days ago I've been reading through your posts and getting lots of helpful information and comfort. What I've been missing, so much, these past months is interaction with people in the situation I and my family are in.
I am a young woman whose beloved mother was diagnosed with bulbar ALS last autumn, after a long period of uncertainty and false diagnoses. Mom's ability to speak disappeared altogether by Christmas, and then slowly the other symptoms started. Now she is in quite a weak condition and it's heartbreaking to see her change for the worse every time I see her.
I live in a different town and try to visit my parents as often as I can, but due to work, I have only managed weekly visits. My father is strong and takes care of mom patiently and bravely... but one of my current biggest grounds for worry is that I can't seem to get enough information on my mom's condition and my parents' possible plans for treatment etc. I wonder if it's me who's afraid of knowing too much or if my dad is trying to protect me (guess this reveals something about my relationship with my dad; close but slightly formal, not very deep). When I'm there, I take care of mom as well as I can and with dad's instructions, but with him we try to keep conversation light and maybe even joke around like normal. Perhaps hoping that would lift mom's mood somewhat. And there may have been a time or two when dad has kind of snapped at me a little when I've asked too many questions about the disease.
Until a couple of months or so ago, my mom was able to email me, so that way I had some insight into her emotions and thoughts. Now she's not emailing or texting anymore, and also has trouble using her communicator device (where she types in words and a machine voice repeats them) -- last weekend I also noticed she no longer remembers the simplest words. She wanted me to do her nails but couldn't get the word right, and it took me a while to guess what she wanted. That happened with other things too.
I feel so lost. With mom's lack of facial expressions and her nowadays limited ability to produce words, I can no longer seem to have any reciprocal communication with mom. I miss her so much... I know she's there, which is a blessing, but how I wish I could have just one conversation with her, like we used to.
Now that I'm reading through this text, it seems so selfish... as if what's going on is all about me. Sorry about that, I'm a little confused :? , and please, if you wish to share your thougths about changed family dynamics and the difficulty of bringing up scary things, I'd love to read them.
Love from
Summer
I'm so glad I found this forum -- since doing so a couple of days ago I've been reading through your posts and getting lots of helpful information and comfort. What I've been missing, so much, these past months is interaction with people in the situation I and my family are in.
I am a young woman whose beloved mother was diagnosed with bulbar ALS last autumn, after a long period of uncertainty and false diagnoses. Mom's ability to speak disappeared altogether by Christmas, and then slowly the other symptoms started. Now she is in quite a weak condition and it's heartbreaking to see her change for the worse every time I see her.
I live in a different town and try to visit my parents as often as I can, but due to work, I have only managed weekly visits. My father is strong and takes care of mom patiently and bravely... but one of my current biggest grounds for worry is that I can't seem to get enough information on my mom's condition and my parents' possible plans for treatment etc. I wonder if it's me who's afraid of knowing too much or if my dad is trying to protect me (guess this reveals something about my relationship with my dad; close but slightly formal, not very deep). When I'm there, I take care of mom as well as I can and with dad's instructions, but with him we try to keep conversation light and maybe even joke around like normal. Perhaps hoping that would lift mom's mood somewhat. And there may have been a time or two when dad has kind of snapped at me a little when I've asked too many questions about the disease.
Until a couple of months or so ago, my mom was able to email me, so that way I had some insight into her emotions and thoughts. Now she's not emailing or texting anymore, and also has trouble using her communicator device (where she types in words and a machine voice repeats them) -- last weekend I also noticed she no longer remembers the simplest words. She wanted me to do her nails but couldn't get the word right, and it took me a while to guess what she wanted. That happened with other things too.
I feel so lost. With mom's lack of facial expressions and her nowadays limited ability to produce words, I can no longer seem to have any reciprocal communication with mom. I miss her so much... I know she's there, which is a blessing, but how I wish I could have just one conversation with her, like we used to.
Now that I'm reading through this text, it seems so selfish... as if what's going on is all about me. Sorry about that, I'm a little confused :? , and please, if you wish to share your thougths about changed family dynamics and the difficulty of bringing up scary things, I'd love to read them.
Love from
Summer