lola64
Member
- Joined
- Oct 10, 2007
- Messages
- 20
- Diagnosis
- 06/2007
- Country
- CA
- State
- Newfoundland
- City
- St. John's
I am reaching an 'at the end of my rope' moment, so I thought I would just defuse here..please excuse my flurry of typing.
My dad is progressing throughout the ivig treatments, rapidly (for those of you who don't know the background, he was initially diagnosed with ALS last summer, then it was backpeddled, they tried ivig treatments, but we are approaching our 6 month trial end, and there seems to be no apparent change). I know I should be on the MNN boards, but with his progression, it appears to me that the ALS/ MND board will understand my feelings a little better right now. I know a reassessment and another EMG is coming up for him in April to determine where our diagnosed stands. He is no longer really able to stand (or move his legs on his own) and his arms are weakening beyond the point of being able to lift them higher than elbow high. In the meantime, my mentally unstable mother (his prime caregiver), refuses to allow homecare of any type into the house, and though she complains that not enough help is being offered by the family, those of us that DO offer help (I'm out there every night to help get my dad into the bathroom), she pushes away or destroys relationships with. She is a weak character and god love her, she's tried to manage on her own, but I know that she has cracked. So on top of all of this, a few weeks back, she insisted on having my uncle and I (i am 130 lbs of little girl strength
) get him to the car from his wheelchair (she was still resistant to using wheelway public transport at that point, since this time she has been forced to), and in short, dad ended up breaking his foot because we could not support his weight fast enough to keep him from falling.
I have nooooo idea where to go with this. Family relations are strained to the max, there are rifts forming between my parents and their kids/ grandkids. People want to help dad but cannot get past my moms stubbornness. The appropriate measures are not being taken to make the house, and my dad's life, more accessible to him, and he is confined in every sense of the word, within himself and within that house. I know that social services could be called in, but what are my other options here? On top of it all, it kills me to see my dad's spirit being crushed because of all of this. I feel like he would say something to her if he could, but I feel he's screaming on the inside but he feels he cannot say anything because it will upset the one person he is completely dependent upon at this point to even move him around, the little that he can right now.
he seems to be scared to leave the house and go in public, fearing people will see his state and that he is confined to a wheelchair. they refuse to let homecare in because of every illogical excuse in the book.. and they will not listen to reasoning.
when i found out of his diagnosed last summer, i chose to move back closer to them in order to help out, however i find that i am being pushed to my limits like i never thought i could be, but also being taken advantage of for the help that i have offered. i am turning into a verbal punching bag for my mother, and i cannot take much more. my own relationship is suffering horribly due to my stress levels, and my work is as well. It is just so frustrating because this situation is stressful enough as it is, but all the family dynamics and interrelations are what are truly keeping us from working together as a capable unit for dad's sake.
someone yank me back to reality ! i know we must all endure this process and the tribulations set in front of us, and that we each must rise to the occasion, but it truly seems too much to bare at times. And those times are now daily. I know we still have so much further to go yet... how do you hold on over and over again? Feels like I'm losing all sanity sometimes!
if anyone has had to endure such difficult family moments, I'd love to hear of them
I know I must not be completely alone in this..
god bless.
My dad is progressing throughout the ivig treatments, rapidly (for those of you who don't know the background, he was initially diagnosed with ALS last summer, then it was backpeddled, they tried ivig treatments, but we are approaching our 6 month trial end, and there seems to be no apparent change). I know I should be on the MNN boards, but with his progression, it appears to me that the ALS/ MND board will understand my feelings a little better right now. I know a reassessment and another EMG is coming up for him in April to determine where our diagnosed stands. He is no longer really able to stand (or move his legs on his own) and his arms are weakening beyond the point of being able to lift them higher than elbow high. In the meantime, my mentally unstable mother (his prime caregiver), refuses to allow homecare of any type into the house, and though she complains that not enough help is being offered by the family, those of us that DO offer help (I'm out there every night to help get my dad into the bathroom), she pushes away or destroys relationships with. She is a weak character and god love her, she's tried to manage on her own, but I know that she has cracked. So on top of all of this, a few weeks back, she insisted on having my uncle and I (i am 130 lbs of little girl strength
) get him to the car from his wheelchair (she was still resistant to using wheelway public transport at that point, since this time she has been forced to), and in short, dad ended up breaking his foot because we could not support his weight fast enough to keep him from falling. I have nooooo idea where to go with this. Family relations are strained to the max, there are rifts forming between my parents and their kids/ grandkids. People want to help dad but cannot get past my moms stubbornness. The appropriate measures are not being taken to make the house, and my dad's life, more accessible to him, and he is confined in every sense of the word, within himself and within that house. I know that social services could be called in, but what are my other options here? On top of it all, it kills me to see my dad's spirit being crushed because of all of this. I feel like he would say something to her if he could, but I feel he's screaming on the inside but he feels he cannot say anything because it will upset the one person he is completely dependent upon at this point to even move him around, the little that he can right now.
he seems to be scared to leave the house and go in public, fearing people will see his state and that he is confined to a wheelchair. they refuse to let homecare in because of every illogical excuse in the book.. and they will not listen to reasoning.
when i found out of his diagnosed last summer, i chose to move back closer to them in order to help out, however i find that i am being pushed to my limits like i never thought i could be, but also being taken advantage of for the help that i have offered. i am turning into a verbal punching bag for my mother, and i cannot take much more. my own relationship is suffering horribly due to my stress levels, and my work is as well. It is just so frustrating because this situation is stressful enough as it is, but all the family dynamics and interrelations are what are truly keeping us from working together as a capable unit for dad's sake.
someone yank me back to reality ! i know we must all endure this process and the tribulations set in front of us, and that we each must rise to the occasion, but it truly seems too much to bare at times. And those times are now daily. I know we still have so much further to go yet... how do you hold on over and over again? Feels like I'm losing all sanity sometimes!
if anyone has had to endure such difficult family moments, I'd love to hear of them
I know I must not be completely alone in this.. god bless.
