Tedstehr
Distinguished member
- Joined
- Aug 25, 2017
- Messages
- 199
- Reason
- PALS
- Diagnosis
- 08/2017
- Country
- CA
- State
- BC
- City
- New Westminster
My father-in-law died of FTD/ALS shortly after my diagnosis of ALS. We knew he had FTD, but had no idea about the ALS until I started researching the disease. When I found this sub forum, I strongly suspected what had happened.
My father-in-law, Yan, was an incredible man. He was a GP and practiced medicine for almost 60 years. His patients loved him and he took the time to understand their lives so he could fully treat them as patients.
We got his diagnosis of FTD, but we couldn't understand the spasticity, the loss of speech and the difficulty swallowing. And everything happened very quickly at first. He was concurrently found to have a large pancreatic tumor and given weeks to live. He lived another year.
We learned a lot from this experience - hopefully I can share the most important thing we learned to help CALS in this situation.
First, have a frank discussion with your PALS about their end of life wishes as soon as possible. Because as the diseases progress, they will not be able to tell you. They may be able to speak, but not understand. Yan told us he did not want assisted dying, but he didn't want heroic measures to save his life. He had a series of urinary tract infections. But does giving someone oral antibiotics constitute heroic measures? We didn't know. In retrospect we should not have asked for them and let nature take its course. We thought it would alleviate the pain and he would pass quickly from the pancreatic tumour. I think it may have prolonged his suffering. Had he been clear about this, it would have made my wife's decision less difficult.
Some people want to be kept alive at all costs, even if they are locked in, and some would prefer to pass away as soon as they lose their quality of life. I think it is the middle ground that needs a lot of discussion.
I don't know if this is always the case, but once things started to degrade, they went downhill fast. Yan lost his ability to speak and then move very quickly. He went from someone we could help to needing full time care in a few months. And then ultimately into care a few months after that.
In short, discuss end of life as soon as possible, and talk about the details as much as you can.
My father-in-law, Yan, was an incredible man. He was a GP and practiced medicine for almost 60 years. His patients loved him and he took the time to understand their lives so he could fully treat them as patients.
We got his diagnosis of FTD, but we couldn't understand the spasticity, the loss of speech and the difficulty swallowing. And everything happened very quickly at first. He was concurrently found to have a large pancreatic tumor and given weeks to live. He lived another year.
We learned a lot from this experience - hopefully I can share the most important thing we learned to help CALS in this situation.
First, have a frank discussion with your PALS about their end of life wishes as soon as possible. Because as the diseases progress, they will not be able to tell you. They may be able to speak, but not understand. Yan told us he did not want assisted dying, but he didn't want heroic measures to save his life. He had a series of urinary tract infections. But does giving someone oral antibiotics constitute heroic measures? We didn't know. In retrospect we should not have asked for them and let nature take its course. We thought it would alleviate the pain and he would pass quickly from the pancreatic tumour. I think it may have prolonged his suffering. Had he been clear about this, it would have made my wife's decision less difficult.
Some people want to be kept alive at all costs, even if they are locked in, and some would prefer to pass away as soon as they lose their quality of life. I think it is the middle ground that needs a lot of discussion.
I don't know if this is always the case, but once things started to degrade, they went downhill fast. Yan lost his ability to speak and then move very quickly. He went from someone we could help to needing full time care in a few months. And then ultimately into care a few months after that.
In short, discuss end of life as soon as possible, and talk about the details as much as you can.