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On Monday, August 6th, 2012, we sang my Daddy into heaven -- Amazing Grace, how sweet the sound. At 7:15 a.m. he was no longer a prisoner trapped in a body that was a victim of the horrific disease called Progressive Supranuclear Palsy. We knew from the time of diagnosis back in 2009 that this disease was terminal. But every patient with PSP is different. Some live a good 10 - 15 years after diagnosis (mostly those diagnosed later in life), but many more are between 5 - 7 years.
He had 3 years from diagnosis. 5 years from onset of symptoms.
Caring for someone with a terminal illness is a strange thing. You look for signs that they're in this stage or that stage, trying to gauge how the illness is progressing, making subconcious notes that make you believe they've still got a ways to go. Daddy was always hardheaded, I guess. He never quite fit the stages. We thought we'd have at least another year of absolute hell and pain to go through. After all, Daddy was still able to communicate (even if it sometimes took 2 of us to try to figure out what he needed), he was full of humor, even though he was in pain, and as of the Friday before his passing, he managed to stand as I held him for his chair/sling to be re-arranged.
Today I went to the store for a few groceries and after I put them all away, I sat and cried because there was nothing for Daddy. That I didn't have one of his famous lists to carry with me in the store. And so I drove to the Dollar Store and bought a bag full of cookies and candy -- because that's what he'd have asked for. Dad's neuro said PSP could cause people to have intense cravings for sweets. We fought it for a while but there came a point where our Hospice nurses said, "You know what? If he wants junk, let him have junk. Give him his boost, his meds, and he'll let you know if/when he wants real food. We could care less about his cholesterol or his weight."
Good point, I guess.
*sighs*
I miss him terribly. I want so much to crawl into bed beside him. To massage his feet and his legs because they hurt so badly, even if the Sombre made my throat burn and my eyes water. I want to watch old westerns with him. Find a new series on Netflix (we just finished all 8 seasons of McLeod's Daughters and he LOVED it). Have him tease me about being behind on Facebook. And me tease him for being such an addict. We did tease a lot.
I'm thankful that he was spared the parts of PSP that scared him the most. The things he read about that would happen to him that would leave him terrified of going to sleep at night. I know God had a plan. And Daddy did, too. He went so far as to change his password to indicate that he knew that. I'd type it in every day and not think twice about what it meant...until Daddy was gone.
Jeremiah 29:11 -- "For know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
There's a lot that we, as a family, finally see in that scripture. One of the taglines of the CurePSP Foundation is that "hope matters"...Daddy never lost hope. He hoped to be able to witness to people in his love for God. He hoped for a cure. He hoped for more attention to be brought to this dreadful disease. He believed that if his being sick could help one person not have to go through it or for a cure to be found, it would all be worth it. And so he donated his brain upon his death so that it might be used to find some answers.
Daddy wasn't one of those stuck-up preachers. He was a cowboy preacher who still had a beer every now and then (ha ha...and then usually asked for his meds with it) and could cuss and have a dirty old man joke to toss in here and there, too. He love working with kids in the schools as an Educational Diagnostician, setting many on the right path when others had deemed those kids "un-saveable." He had an impact on so many.
One day I will see his smiling face again, hear his infectious laughter, his comforting voice, and feel his arms wrapped around me. Until then, I'm going to take his advice and "just do it". My future path isn't what I planned years ago, but I know in my heart that it's the right one. And I know it's the path that my Daddy would be so proud to see me follow.
Things are different now. We're confused, sad, angry, relieved...so many emotions that are there one moment and changed the next. The grieving process has just begun and I'm sure it'll be a long process full of ups and downs. Part of me knows that there are things to be done, that life must continue on, but another part of me just needs to lay here in bed and cry for a while. It's hard to say goodbye because I know he'll always be with me. So maybe I'll just say, "See you later, Daddy. I love you high as the sky, deep as the ocean, big like the world."
CurePSP - Foundation for PSP | CBD and Related Brain Diseases
"because hope matters..."
http://www.psp.org
He had 3 years from diagnosis. 5 years from onset of symptoms.
Caring for someone with a terminal illness is a strange thing. You look for signs that they're in this stage or that stage, trying to gauge how the illness is progressing, making subconcious notes that make you believe they've still got a ways to go. Daddy was always hardheaded, I guess. He never quite fit the stages. We thought we'd have at least another year of absolute hell and pain to go through. After all, Daddy was still able to communicate (even if it sometimes took 2 of us to try to figure out what he needed), he was full of humor, even though he was in pain, and as of the Friday before his passing, he managed to stand as I held him for his chair/sling to be re-arranged.
Today I went to the store for a few groceries and after I put them all away, I sat and cried because there was nothing for Daddy. That I didn't have one of his famous lists to carry with me in the store. And so I drove to the Dollar Store and bought a bag full of cookies and candy -- because that's what he'd have asked for. Dad's neuro said PSP could cause people to have intense cravings for sweets. We fought it for a while but there came a point where our Hospice nurses said, "You know what? If he wants junk, let him have junk. Give him his boost, his meds, and he'll let you know if/when he wants real food. We could care less about his cholesterol or his weight."
Good point, I guess.
*sighs*
I miss him terribly. I want so much to crawl into bed beside him. To massage his feet and his legs because they hurt so badly, even if the Sombre made my throat burn and my eyes water. I want to watch old westerns with him. Find a new series on Netflix (we just finished all 8 seasons of McLeod's Daughters and he LOVED it). Have him tease me about being behind on Facebook. And me tease him for being such an addict. We did tease a lot.
I'm thankful that he was spared the parts of PSP that scared him the most. The things he read about that would happen to him that would leave him terrified of going to sleep at night. I know God had a plan. And Daddy did, too. He went so far as to change his password to indicate that he knew that. I'd type it in every day and not think twice about what it meant...until Daddy was gone.
Jeremiah 29:11 -- "For know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
There's a lot that we, as a family, finally see in that scripture. One of the taglines of the CurePSP Foundation is that "hope matters"...Daddy never lost hope. He hoped to be able to witness to people in his love for God. He hoped for a cure. He hoped for more attention to be brought to this dreadful disease. He believed that if his being sick could help one person not have to go through it or for a cure to be found, it would all be worth it. And so he donated his brain upon his death so that it might be used to find some answers.
Daddy wasn't one of those stuck-up preachers. He was a cowboy preacher who still had a beer every now and then (ha ha...and then usually asked for his meds with it) and could cuss and have a dirty old man joke to toss in here and there, too. He love working with kids in the schools as an Educational Diagnostician, setting many on the right path when others had deemed those kids "un-saveable." He had an impact on so many.
One day I will see his smiling face again, hear his infectious laughter, his comforting voice, and feel his arms wrapped around me. Until then, I'm going to take his advice and "just do it". My future path isn't what I planned years ago, but I know in my heart that it's the right one. And I know it's the path that my Daddy would be so proud to see me follow.
Things are different now. We're confused, sad, angry, relieved...so many emotions that are there one moment and changed the next. The grieving process has just begun and I'm sure it'll be a long process full of ups and downs. Part of me knows that there are things to be done, that life must continue on, but another part of me just needs to lay here in bed and cry for a while. It's hard to say goodbye because I know he'll always be with me. So maybe I'll just say, "See you later, Daddy. I love you high as the sky, deep as the ocean, big like the world."
CurePSP - Foundation for PSP | CBD and Related Brain Diseases
"because hope matters..."
http://www.psp.org