Hi all,
This is my first time on a forum; I decided to join having read the tremendous support and guidance that you have all shown to others.
My father (Tony) was finally diagnosed with rapid onset Motor Neurone Disease (suspected ALS type) on 20th December 2022, after a year-long battle to find out what was wrong with him.
At the start of 2022, my father was a 79 year old man who enjoyed 5-6 mile hikes over the hills with my mother, extremely active and happy to have finally relocated back near the family from France. Today, he is a shell of his former self, unable to walk unassisted for more than 5m, breathless, loss of movement in his hands an arms…but most importantly, his sever depression, lack of confidence and fear is heartbreaking to watch.
My father has always been a very proud and physical man, having served in the military and for the government right until his retirement. He has always been the one to help others and is finding it extremely difficult now the tables have turned. To some extent, this may have been easier for him had there been some neurological deterioration, however he is still bright as a button and feels useless and a burden.
I have to say that since diagnosis, the amount of support we have received from many teams has been phenomenal, and we are all trying to adjust in our own way as a family. I have to say however, that I am finding my parents’ respective attitudes frustrating to say the least.
This next statement isn’t meant to come across as harsh and I love my mother very much, but she has always been very ego-centric and emotionally unstable. She isn’t dealing with my dad’s illness very well and won’t take up the offer of help or support when offered (for example, talking to a counsellor at the hospice etc). She also keeps ‘Googling’ dad’s symptoms, which then makes her worse. I have told her several times to avoid doing that and to only listen to dad’s health team (everyone’s journey is different), but she keeps doing it and winding herself up. She then gets upset, which gets my dad upset even more.
My dad on the other hand is stuck in his own head and it’s almost impossible to get him out of it. He says his life isn’t worth living any more and he has no quality of life… Again this is heartbreaking to hear. He feels embarrassed and frightened that he no longer has control over his body. He is angry that he can no longer do things he used to do, but won’t accept any assistance (e.g. in the form of a wheelchair etc), which would enable him to still do the things he used to. He understands that his disease is likely to be a quick one and that it is degenerative, but he’s living emotionally as though he has already died (if that makes sense). He does speak to a therapist and is on Sertraline (4 months), but he’s only worsened.
I accept that I can’t fix this problem for my parents, but it’s so very hard seeing them go through this.
Sorry for the rant, but just wanted to share with others who may understand what’s going on.
This is my first time on a forum; I decided to join having read the tremendous support and guidance that you have all shown to others.
My father (Tony) was finally diagnosed with rapid onset Motor Neurone Disease (suspected ALS type) on 20th December 2022, after a year-long battle to find out what was wrong with him.
At the start of 2022, my father was a 79 year old man who enjoyed 5-6 mile hikes over the hills with my mother, extremely active and happy to have finally relocated back near the family from France. Today, he is a shell of his former self, unable to walk unassisted for more than 5m, breathless, loss of movement in his hands an arms…but most importantly, his sever depression, lack of confidence and fear is heartbreaking to watch.
My father has always been a very proud and physical man, having served in the military and for the government right until his retirement. He has always been the one to help others and is finding it extremely difficult now the tables have turned. To some extent, this may have been easier for him had there been some neurological deterioration, however he is still bright as a button and feels useless and a burden.
I have to say that since diagnosis, the amount of support we have received from many teams has been phenomenal, and we are all trying to adjust in our own way as a family. I have to say however, that I am finding my parents’ respective attitudes frustrating to say the least.
This next statement isn’t meant to come across as harsh and I love my mother very much, but she has always been very ego-centric and emotionally unstable. She isn’t dealing with my dad’s illness very well and won’t take up the offer of help or support when offered (for example, talking to a counsellor at the hospice etc). She also keeps ‘Googling’ dad’s symptoms, which then makes her worse. I have told her several times to avoid doing that and to only listen to dad’s health team (everyone’s journey is different), but she keeps doing it and winding herself up. She then gets upset, which gets my dad upset even more.
My dad on the other hand is stuck in his own head and it’s almost impossible to get him out of it. He says his life isn’t worth living any more and he has no quality of life… Again this is heartbreaking to hear. He feels embarrassed and frightened that he no longer has control over his body. He is angry that he can no longer do things he used to do, but won’t accept any assistance (e.g. in the form of a wheelchair etc), which would enable him to still do the things he used to. He understands that his disease is likely to be a quick one and that it is degenerative, but he’s living emotionally as though he has already died (if that makes sense). He does speak to a therapist and is on Sertraline (4 months), but he’s only worsened.
I accept that I can’t fix this problem for my parents, but it’s so very hard seeing them go through this.
Sorry for the rant, but just wanted to share with others who may understand what’s going on.
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