K5tsPajamas
New member
- Joined
- Nov 30, 2017
- Messages
- 9
- Reason
- Learn about ALS
- Country
- CA
- State
- Ontario
- City
- Waterloo
In the Fall of 2015 my dad started noticing some weakness and stiffness in his arms. He became more easily fatigue that normal, began feeling like it was taking more and more effort to breath. Being an active person, he particularly concerned and decided to pay a visit to the family doc.
On the first visit, we were told it was just a symptom of aging. My dad was 62 at the time. Now, 62 isn’t the new 30, but it’s also not the new 110, at which point I imagine weakness and stiffness might be relatively common. That ‘diagnosis’ didn’t seem right. SO we pushed, and three appointments later, were able to get the doctor to agree to do some tests.
But before we got in to do the tests, my dad was admitted to the ICU, unresponsive. When we got there, they determined that his lungs were failing and that high CO2 levels pushed him into a coma of sorts. They quickly performed a tracheostomy and hooked him up to life support, while they ran tests for weeks to try to figure out what was going on. He stayed in the ICU until late 2016, when he finally got his diagnosis.
But after all the back and forth, my dad was skeptical and didn’t believe ALS was the correct diagnosis. He fought it until recently; asking them to do more research, more tests and more consultations…He didn’t want to talk about planning or management, he just wanted a cure for whatever it is that he had (not ALS).
More than a year later (2 since the initial symptoms) he’s lost 90% of the mobility in his arms, a significant amount of strength in his legs, neck and core, and he’s tired. He hasn’t stopped fighting, but he has slowed down. At this point, it seems like he’s just trying to stay as positive as possible. He’s turned to God for comfort, and that seems to really help.
He doesn’t like talking about his condition, but occasionally he will give us an update about how he’s feeling physically (i.e. if he’s feeling weaker, stiff, sleepy, etc.).
I always wonder what things might be like, if he was able to talk about his condition more. I feel like I haven’t been able to support him as much as I want to because he’s been in the hospital. I can help him with his hygiene/ grooming. I can help him with his meals, talk to him, pray with…but I’m terrified that I’m letting him down as a daughter.
I got accepted to grad school just before he was diagnosed. So, in an effort to make a different for my dad and for others, I decided to dedicate my research to improving our health care system, and helping people to cope. I’m not sure how much of a difference I will make, but my dad enjoys hearing updates about my research and says he’s happy to know that I’m dedicated and passionate about my research. I think that’s something.
[Sorry for the long winded story].
So, I guess I’m wondering if there are any other daughters, sons, family members out there who feel like their caregiving experiences have been similar? I’ve also posted some information about my research under the ‘research news’ tab, if you or someone you know (with experience in the Canadian health care system) that might want to tell their story.
On the first visit, we were told it was just a symptom of aging. My dad was 62 at the time. Now, 62 isn’t the new 30, but it’s also not the new 110, at which point I imagine weakness and stiffness might be relatively common. That ‘diagnosis’ didn’t seem right. SO we pushed, and three appointments later, were able to get the doctor to agree to do some tests.
But before we got in to do the tests, my dad was admitted to the ICU, unresponsive. When we got there, they determined that his lungs were failing and that high CO2 levels pushed him into a coma of sorts. They quickly performed a tracheostomy and hooked him up to life support, while they ran tests for weeks to try to figure out what was going on. He stayed in the ICU until late 2016, when he finally got his diagnosis.
But after all the back and forth, my dad was skeptical and didn’t believe ALS was the correct diagnosis. He fought it until recently; asking them to do more research, more tests and more consultations…He didn’t want to talk about planning or management, he just wanted a cure for whatever it is that he had (not ALS).
More than a year later (2 since the initial symptoms) he’s lost 90% of the mobility in his arms, a significant amount of strength in his legs, neck and core, and he’s tired. He hasn’t stopped fighting, but he has slowed down. At this point, it seems like he’s just trying to stay as positive as possible. He’s turned to God for comfort, and that seems to really help.
He doesn’t like talking about his condition, but occasionally he will give us an update about how he’s feeling physically (i.e. if he’s feeling weaker, stiff, sleepy, etc.).
I always wonder what things might be like, if he was able to talk about his condition more. I feel like I haven’t been able to support him as much as I want to because he’s been in the hospital. I can help him with his hygiene/ grooming. I can help him with his meals, talk to him, pray with…but I’m terrified that I’m letting him down as a daughter.
I got accepted to grad school just before he was diagnosed. So, in an effort to make a different for my dad and for others, I decided to dedicate my research to improving our health care system, and helping people to cope. I’m not sure how much of a difference I will make, but my dad enjoys hearing updates about my research and says he’s happy to know that I’m dedicated and passionate about my research. I think that’s something.
[Sorry for the long winded story].
So, I guess I’m wondering if there are any other daughters, sons, family members out there who feel like their caregiving experiences have been similar? I’ve also posted some information about my research under the ‘research news’ tab, if you or someone you know (with experience in the Canadian health care system) that might want to tell their story.
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