dadsdaughter
New member
- Joined
- Dec 19, 2009
- Messages
- 9
- Reason
- CALS
- Diagnosis
- 2/2008
- Country
- US
- State
- Del
- City
- Wilmington
Hi everyone,
I am so glad I stopped back in to the support forum and, miraculously, my last post was at the top of the page! A lot of those kinds of things have been happening lately...
I am sorry to tell you that my father passed on December 27 at 12:45 a.m. at age 73. It was unexpected at the time because he was supposed to get fluids and nutrients to build up his strength because he had stopped eating for several days due to choking. As his firstborn daughter who shared the love of writing and reading with him, I was given his journals and writings per his decree, to edit and hopefully publish some of his essays and stories. I mention this because in his final journal I was able to read about his psychological pain, and all of the advice the PALS gave me here was absolutely spot on, e.g., talking through the machine sucked and that he demanded his dignity which sometimes took the form of creating distance. Yes, I understand that I was being selfish because I didn't want to lose my Dad, and he was such a hero to me and more than anything, I wanted to give him some tiny bit of happiness before he passed and couldn't. I was able to give him a long letter about a month before he passed telling him how much influence he had on my life and my daughter's life. I write to you to tell you that I did get to see Dad come to some kind of peace, and I was lucky enough to see, for one last time, the most gracious and beautiful man I have ever known or ever will know on the day before he left us. It was a Christmas miracle for me and my daughter and one that will change my life forever.
This past Christmas Eve night, my father was the most engaged, happy and peaceful I have seen since his diagnosis last February.
When preparing for the holidays with my mother, I could see that Dad wasn't into any of it; while Mom and us kids all understood, part of us were a little confused because almost all of our family traditions, especially Christmas, come from Dad and his Italian upbringing and Dad, more than any of us, took the greatest joy in the tradition and celebration--not so much the gifts and material things. Initially he told my mom he didn't want to see anyone or participate in Christmas at all. By the time Christmas Eve came around, Dad had taken to his bed, already for two days, for the first time since he got sick. Like I mentioned, we are of Italian decent, and one of Dad's famous traditions was an open house on Christmas Eve where a number of different seafood dishes are served along with a feast of other good food and drink, and we all talk and laugh and share our love through the night.
Mom worried about what to do this year, but one of the nurses said that we should carry on, but try not to disturb Dad as he rested upstairs. My sister, my daughter and I cooked the smelts and baccala and shrimp and all of the other goodies and greeted our guests. Mom told folks Dad wasn't up for visitors and wanted to rest.
Well, thank goodness I have a rude family because one-by-one people simply slipped quietly upstairs and talked to Dad. When my husband, who sat by Dad's side all night, came downstairs and told me Dad was in good spirits and talking to his visitors, I was happily surprised--no, elated! I decided to keep my mouth shut and let people keep on doing what they were doing, secretly joyful that my father was receiving and enjoying company. Finally, my daughter and her Italian boyfriend Vittorio, who was here visiting from Sicily, asked me to go with them up to Dad's room, so Vito could meet him and Katie could say goodbye, as she was leaving in a few days to go back to Sicily. I tapped on the door, peeked in, and asked Dad if we could come in, and he waved us in. Then,to my delight and to Dad's surprise, the Vito burst into animated Italian and proceeded to give an impromptu speech honoring Dad and the beautiful family he created and the beautiful life he created and told him how Italians don't give up and asked him to hang in there--all in Italian language! After about 30 seconds, I realized that Dad understood every word Vito was saying--even though he hadn't spoken or heard Italian like that since he lived with his grandparents as a young man. After they left, I told my father that his granddaughter honors him all the time and that he truly is all of those great things the boyfriend said to him. Dad wrote to me on the whiteboard he uses when the dynowrite gets too heavy, that he decided to hang in there and when I asked if he would get the feeding tube he shrugged and nodded "yes." I understand it wasn't a dramatic declaration of life, but it was a beautiful acknowledgement of the love we all had for him. I looked into his eyes and saw, along with a deep sadness, an expression of peace that I hadn't seen before. Dad was willing to hang on, but he also could see that he was not going to be forgotten--he could see how much he was loved. The next day, Christmas, I was told he wanted to rest and to stay at home. The day after, he called my husband (his muscle) and asked to go to the hospital because he had trouble breathing. Later that evening he went in his sleep--which was a blessing and which is what he wanted all along.
I am sharing this with you because I want you to know that your strength is something that not everyone has--and for that you are heroic, to me at least-- and to thank you for the kind words and even for the tough words which helped me understand, if only to a small degree what Dad was going through. Thank you all so very much for your advice and for showing me how very strong and proud and understanding you are, for you are the example of what I must strive to be. I promise you, I will honor my father and honor all of you through my writing and I will be an activist and never give up fighting for a treatment for ALS. I am a newborn advocate, but I plan on kicking butt to get the word out about the need for a cure. Please don't give up! I won't! Thank you and may God bless you.
I am so glad I stopped back in to the support forum and, miraculously, my last post was at the top of the page! A lot of those kinds of things have been happening lately...
I am sorry to tell you that my father passed on December 27 at 12:45 a.m. at age 73. It was unexpected at the time because he was supposed to get fluids and nutrients to build up his strength because he had stopped eating for several days due to choking. As his firstborn daughter who shared the love of writing and reading with him, I was given his journals and writings per his decree, to edit and hopefully publish some of his essays and stories. I mention this because in his final journal I was able to read about his psychological pain, and all of the advice the PALS gave me here was absolutely spot on, e.g., talking through the machine sucked and that he demanded his dignity which sometimes took the form of creating distance. Yes, I understand that I was being selfish because I didn't want to lose my Dad, and he was such a hero to me and more than anything, I wanted to give him some tiny bit of happiness before he passed and couldn't. I was able to give him a long letter about a month before he passed telling him how much influence he had on my life and my daughter's life. I write to you to tell you that I did get to see Dad come to some kind of peace, and I was lucky enough to see, for one last time, the most gracious and beautiful man I have ever known or ever will know on the day before he left us. It was a Christmas miracle for me and my daughter and one that will change my life forever.
This past Christmas Eve night, my father was the most engaged, happy and peaceful I have seen since his diagnosis last February.
When preparing for the holidays with my mother, I could see that Dad wasn't into any of it; while Mom and us kids all understood, part of us were a little confused because almost all of our family traditions, especially Christmas, come from Dad and his Italian upbringing and Dad, more than any of us, took the greatest joy in the tradition and celebration--not so much the gifts and material things. Initially he told my mom he didn't want to see anyone or participate in Christmas at all. By the time Christmas Eve came around, Dad had taken to his bed, already for two days, for the first time since he got sick. Like I mentioned, we are of Italian decent, and one of Dad's famous traditions was an open house on Christmas Eve where a number of different seafood dishes are served along with a feast of other good food and drink, and we all talk and laugh and share our love through the night.
Mom worried about what to do this year, but one of the nurses said that we should carry on, but try not to disturb Dad as he rested upstairs. My sister, my daughter and I cooked the smelts and baccala and shrimp and all of the other goodies and greeted our guests. Mom told folks Dad wasn't up for visitors and wanted to rest.
Well, thank goodness I have a rude family because one-by-one people simply slipped quietly upstairs and talked to Dad. When my husband, who sat by Dad's side all night, came downstairs and told me Dad was in good spirits and talking to his visitors, I was happily surprised--no, elated! I decided to keep my mouth shut and let people keep on doing what they were doing, secretly joyful that my father was receiving and enjoying company. Finally, my daughter and her Italian boyfriend Vittorio, who was here visiting from Sicily, asked me to go with them up to Dad's room, so Vito could meet him and Katie could say goodbye, as she was leaving in a few days to go back to Sicily. I tapped on the door, peeked in, and asked Dad if we could come in, and he waved us in. Then,to my delight and to Dad's surprise, the Vito burst into animated Italian and proceeded to give an impromptu speech honoring Dad and the beautiful family he created and the beautiful life he created and told him how Italians don't give up and asked him to hang in there--all in Italian language! After about 30 seconds, I realized that Dad understood every word Vito was saying--even though he hadn't spoken or heard Italian like that since he lived with his grandparents as a young man. After they left, I told my father that his granddaughter honors him all the time and that he truly is all of those great things the boyfriend said to him. Dad wrote to me on the whiteboard he uses when the dynowrite gets too heavy, that he decided to hang in there and when I asked if he would get the feeding tube he shrugged and nodded "yes." I understand it wasn't a dramatic declaration of life, but it was a beautiful acknowledgement of the love we all had for him. I looked into his eyes and saw, along with a deep sadness, an expression of peace that I hadn't seen before. Dad was willing to hang on, but he also could see that he was not going to be forgotten--he could see how much he was loved. The next day, Christmas, I was told he wanted to rest and to stay at home. The day after, he called my husband (his muscle) and asked to go to the hospital because he had trouble breathing. Later that evening he went in his sleep--which was a blessing and which is what he wanted all along.
I am sharing this with you because I want you to know that your strength is something that not everyone has--and for that you are heroic, to me at least-- and to thank you for the kind words and even for the tough words which helped me understand, if only to a small degree what Dad was going through. Thank you all so very much for your advice and for showing me how very strong and proud and understanding you are, for you are the example of what I must strive to be. I promise you, I will honor my father and honor all of you through my writing and I will be an activist and never give up fighting for a treatment for ALS. I am a newborn advocate, but I plan on kicking butt to get the word out about the need for a cure. Please don't give up! I won't! Thank you and may God bless you.