pdcraig
Distinguished member
- Joined
- Mar 2, 2013
- Messages
- 101
- Reason
- Lost a loved one
- Diagnosis
- 09/2012
- Country
- CA
- State
- ontario
- City
- oshawa
I've been catching up today and in the roll call was introduced to Slippery Sally
All I can say is "God d****t". How is it I have never heard of this? Thank you Tillie BTW.
Even 4 1/2 years into this, there is still the seemingly never ending, "I didn't know that."
It got me thinking of all the" why did nobody mention this?" moments I've had over the years.
Like edema, not on my radar at all until my PALS feet swelled up like balloons one weekend. I didn't even know what it was called. Thank you Google for knowing what I was looking for even when I didn't. Oh, that's not an ALS symptom. Thanks, but decreased mobility is. A heads up would have been nice.
Cough Assist, the only reason I know anything about it is this forum and Google. The LTC facility was bad enough with the BiPAP, Cough Assist got the wide eyed blank stare. How is it no one from clinic has mentioned this?
Don't get me started on the red tape. Oh, yes his income qualifies for assistance but he's on CPP Disability, that's federal. We only have rates for ODSP, that's provincial. We don't do anything with CPP. That little gem cost me $3000.
Even on the forum things can get a bit muddled. Hospice for me is mainly an outreach program that can offer volunteers to visit. If I'm looking for support workers, that's CCAC, in Ontario. Who can also put me in touch with respite programs run out of hospitals or long term care facilities or palliative care that is again in hospitals or arranged in home. Palliative care is with the understanding you are within the last 3 months of life and normally referred by doctor.
I understand the differences by country, I even understand differences by region. What I don't understand is why it has to be so difficult to actually get the information.
Did you know a POA could be refused? It took me over a year to get my POA recognized by my PALS HR dept, to get his health insurance premiums paid.
And his bank, also his previous employer, same thing. I never did win that fight. What do you mean I can't call him? Well, we have to verify this with him, can he not come in? If he could come in and do it himself, I wouldn't have this notarized, legal document with his signature on it that was good enough for the federal, provincial and municipal government now would I?
Wait, if he was a bank employee why did I have to do this twice? How could I win with the HR department and not get access to his accounts? Apparently it's a conflict of interest somehow. I had 2 separate files with the same legal department ongoing at the the same time. One went through finally, the other didn't. And yes, I hold POA for health and property.
Like battling through ignorance at every level of the health care system isn't enough. Although I will say, most have been very upfront about having no idea how to treat an ALS patient.
Just one more reason sharing here on the forum is so valuable.
On that note, here is my share, a posey. It's actually a finger contracture cushion. Now that my PALS hands have started to curl, this helps keep him more comfortable. One of the people from restorative gave it to him. Not PT, restorative.
I give up.
Anything you didn't know you didn't know?
Paul
Prince of Persistence
=o0:neutral:0o=
All I can say is "God d****t". How is it I have never heard of this? Thank you Tillie BTW.
Even 4 1/2 years into this, there is still the seemingly never ending, "I didn't know that."
It got me thinking of all the" why did nobody mention this?" moments I've had over the years.
Like edema, not on my radar at all until my PALS feet swelled up like balloons one weekend. I didn't even know what it was called. Thank you Google for knowing what I was looking for even when I didn't. Oh, that's not an ALS symptom. Thanks, but decreased mobility is. A heads up would have been nice.
Cough Assist, the only reason I know anything about it is this forum and Google. The LTC facility was bad enough with the BiPAP, Cough Assist got the wide eyed blank stare. How is it no one from clinic has mentioned this?
Don't get me started on the red tape. Oh, yes his income qualifies for assistance but he's on CPP Disability, that's federal. We only have rates for ODSP, that's provincial. We don't do anything with CPP. That little gem cost me $3000.
Even on the forum things can get a bit muddled. Hospice for me is mainly an outreach program that can offer volunteers to visit. If I'm looking for support workers, that's CCAC, in Ontario. Who can also put me in touch with respite programs run out of hospitals or long term care facilities or palliative care that is again in hospitals or arranged in home. Palliative care is with the understanding you are within the last 3 months of life and normally referred by doctor.
I understand the differences by country, I even understand differences by region. What I don't understand is why it has to be so difficult to actually get the information.
Did you know a POA could be refused? It took me over a year to get my POA recognized by my PALS HR dept, to get his health insurance premiums paid.
And his bank, also his previous employer, same thing. I never did win that fight. What do you mean I can't call him? Well, we have to verify this with him, can he not come in? If he could come in and do it himself, I wouldn't have this notarized, legal document with his signature on it that was good enough for the federal, provincial and municipal government now would I?
Wait, if he was a bank employee why did I have to do this twice? How could I win with the HR department and not get access to his accounts? Apparently it's a conflict of interest somehow. I had 2 separate files with the same legal department ongoing at the the same time. One went through finally, the other didn't. And yes, I hold POA for health and property.
Like battling through ignorance at every level of the health care system isn't enough. Although I will say, most have been very upfront about having no idea how to treat an ALS patient.
Just one more reason sharing here on the forum is so valuable.
On that note, here is my share, a posey. It's actually a finger contracture cushion. Now that my PALS hands have started to curl, this helps keep him more comfortable. One of the people from restorative gave it to him. Not PT, restorative.
I give up.
Anything you didn't know you didn't know?
Paul
Prince of Persistence
=o0:neutral:0o=