mariam
Member
- Joined
- Nov 5, 2013
- Messages
- 29
- Reason
- Loved one DX
- Diagnosis
- 10/2013
- Country
- US
- State
- ca
- City
- Orange
Hi All! I have not been on too much in the last few months. My dad was diagnosed end of October 2013 and seems to be hanging in there. He has Bulbar so his speech has gotten harder to understand and I can tell he tries hard to say his words. His left hand looks like it a claw, but he seems strong.
A few problems.... My mom doesn't want to talk about it in front of him and everyone thinks he doesn't quite understand the severity of his disease. My mom just says that he is having problems with his nerves and just getting weaker is all. His mind has been affected so he tends to act very childlike at times, yet other times he seems like his normal self. It bothers me because I want him to be aware of his condition but my mom thinks it will depress him if he knows...my husband thinks he knows and is pretending nothing is wrong. My dad says he feels great and always wants to leave the doctors' office abruptly because nothing is wrong with him. It makes me sad. He gets OCCASIONAL pain in his jaw area, his hands and on Saturday in his neck (that lasted around 2 minutes or so). One of you awesome helpers told me to put a sock in the micro with rice and that has done the trick so many times. He also gets super tired walking now, even around the corner.
My mom is at her wits end with him and I tell her to just be patient, his personality and he in general are just not the same anymore and she is frustrated with him and she is tired of being cooped up in the house all day because he does not want to go anywhere.
We are almost done with our construction in our house, where we are adding on a downstairs bedroom with handicap restroom for him. We explain to him and show him and tell his this is going to be so awesome having them move in with us and he agrees and seems excited....until he leaves here and drives my mom crazy that he is NOT selling his house and moving. She is so excited to be part of our family and have a social life again (she is too afraid to leave him alone because of his mental capacity). So sorry to vent on here but I am so sad and frustrated myself. I feel that my mom's health is deteriorating because of the stress that is on her being alone with him in their house without friends or family around. I wish he was not so stubborn. It seems like his brain that is failing has brought out the worst in his personality with my mom.
I have read and read and I know that everyone is different with this disease but it really bums me out that my dad has the ALS and I think the frontal lobal (sp?) has also been affected. I am also worried on time and how long we have with him. Again...sorry I am venting an all over the place here with my writing. I guess I just want to share my feelings right now and hopefully some of you know where I am coming from. I adore my dad and I wish this disease would not have struck him...I'm just blue on a Monday (I guess I am throwing my own pity party today)
Hope you are all well and again..sorry to vent!
A few problems.... My mom doesn't want to talk about it in front of him and everyone thinks he doesn't quite understand the severity of his disease. My mom just says that he is having problems with his nerves and just getting weaker is all. His mind has been affected so he tends to act very childlike at times, yet other times he seems like his normal self. It bothers me because I want him to be aware of his condition but my mom thinks it will depress him if he knows...my husband thinks he knows and is pretending nothing is wrong. My dad says he feels great and always wants to leave the doctors' office abruptly because nothing is wrong with him. It makes me sad. He gets OCCASIONAL pain in his jaw area, his hands and on Saturday in his neck (that lasted around 2 minutes or so). One of you awesome helpers told me to put a sock in the micro with rice and that has done the trick so many times. He also gets super tired walking now, even around the corner.
My mom is at her wits end with him and I tell her to just be patient, his personality and he in general are just not the same anymore and she is frustrated with him and she is tired of being cooped up in the house all day because he does not want to go anywhere.
We are almost done with our construction in our house, where we are adding on a downstairs bedroom with handicap restroom for him. We explain to him and show him and tell his this is going to be so awesome having them move in with us and he agrees and seems excited....until he leaves here and drives my mom crazy that he is NOT selling his house and moving. She is so excited to be part of our family and have a social life again (she is too afraid to leave him alone because of his mental capacity). So sorry to vent on here but I am so sad and frustrated myself. I feel that my mom's health is deteriorating because of the stress that is on her being alone with him in their house without friends or family around. I wish he was not so stubborn. It seems like his brain that is failing has brought out the worst in his personality with my mom.
I have read and read and I know that everyone is different with this disease but it really bums me out that my dad has the ALS and I think the frontal lobal (sp?) has also been affected. I am also worried on time and how long we have with him. Again...sorry I am venting an all over the place here with my writing. I guess I just want to share my feelings right now and hopefully some of you know where I am coming from. I adore my dad and I wish this disease would not have struck him...I'm just blue on a Monday (I guess I am throwing my own pity party today)
Hope you are all well and again..sorry to vent!