khoops93
New member
- Joined
- Jul 10, 2015
- Messages
- 5
- Reason
- Lost a loved one
- Diagnosis
- 10/2014
- Country
- US
- State
- NY
- City
- Hopewell JCT
I'm new here! I found this site because I'm trying to sell some of the abundance of medical equipment we accumulated while my Dad was sick. But, since I'm here...
My father's name is Mark T. Hoops. I'm not sure yet if it's unhealthy for me to use the present tense, but there will never be another father to me. He was the most energetic, vivacious, interesting, gregarious, outgoing, charismatic, and intelligent people I should ever hope to know. He was very well loved and respected in the communities in which he worked and lived. He was a lawyer for NYS in the Attorney General's office, through which he earned three superior service awards. He was the president of our homeowners' association. He was a member of the local rod and gun club and had an extensive collection of rifles, shotguns and handguns (though he had overwhelmingly liberal tendencies). He started to slow down around August of 2014 (a week after he helped me move into my new apartment-- mattress and bookcases and all). We hoped it was Lyme, because all the doctors said "this is happening much too quickly to be a degenerative MND. We'll keep testing."
But, by October, my Dad was falling a lot. He was no longer able to get to work, so he would spend whole days in our finished basement, next to the pellet stove and computer, skipping meals and trips to the bathroom because his "500-lb lead arms and legs" would make getting up the stairs an ordeal.
Finally he was referred to an ALS specialist at Columbia, and we got the EMG results on October 28 (I remember, because I was setting up for a Halloween party with my friends when I got the phone call from my mom). I have a feeling my Dad had figured it out long before then... he was always the first to research something he didn't understand. I remember all I could say was, "that's it? that's the only thing it can be?", thinking, "this is the worst case scenario." I have a tendency to wax macabre, but in this case, my preparing for the worst was only practical. A close mentor of mine also had ALS for about 5 years, and passed in 2012. Watching her get sick was the hardest thing I'd done, and I only visited a few times. Little did I know I would be living every day with it.
The next time I saw him was November 18 at my cousin's wedding. Despite the hilarious festivities and having some of my best friends and family there, I was beside myself. Here, less than a month after diagnosis, my father's voice was barely a whisper. He needed a walker to get to the bathroom, and spent the party in a wheelchair. He would moan at night in the hotel room next to mine because he needed help to turn over on his side. It was then I knew that my dad would not be there to wish me a happy 22nd birthday in March. I was right.
My mom was working full time and taking care of him whenever she was home, sacrificing sleep for his comfort. on the 21st, she was on her way home at 11 am, and fell asleep about a mile from our front door. She cracked 7 ribs and broke her ankle in 3 places. It became clear that I was needed at home. I deferred my Masters degree studies until the following semester, left for Thanksgiving and did not return for finals. My dad received his medical bed and ALS lift chair, and those were the places he and my mother slept. She needed help to change her clothes. He needed help to do literally everything. I was within and without.
There is so much that happened in my family and in my life in those weeks I spent at home, and most of it I haven't processed enough to put into words. I hope some day I can talk about it without rambling, crying or otherwise becoming resentful and upset.
Suffice it to say, when I went back to school in late January, I was happy to be leaving this toxic place of sickness. My mother was getting back on her feet, and my Dad's needs became limited because he was no longer able to communicate wanting more coffee or needing his butt scratched. At that point, he wanted to be moved as little as possible, as the spasms and fasiculations had become so constant and incredibly painful that any stimulation would make it that much worse. So, he took the remote and watched all of the Blacklist and American Horror Story on Netflix (he was never much for TV, but developed a taste for it).
When I left, I said goodbye. I told my Dad it was okay and I loved him. I was the only person he really tried to communicate with, and he told me everything I needed to hear from him.
School began, I threw myself into my studies, and was fine for a few weeks. Then the snow came. My mom would tell me over the phone that nurses were canceling, she was receiving less help from neighbors and family for getting him in and out of bed. My brother and I visited February 7, for Steve's birthday, and we had "the talk" about Hospice. We made the decision that day, and called the ambulance that night. When I left that day and beat the ambulance, I told him not to wait around to see me again. He just smiled (as much as he could smile) and mouthed "okay"
I was relieved when he went to a place where he got all the help he needed. After the perfunctory 3-night hospital stay, he arrived at hospice, used assistive tech to say "I came here to find peace, and I have. Morphine, please." He went into a medical coma that night, and stayed "under" until February 21st, at 4 pm. He had had a visit from the family dog that day (who was quite attached to him through his illness), and whatever involuntary muscles kept his chest rising and falling gave out, sometime during a recording of Beethoven's Fifth symphony, his all-time favorite piece.
I'm not sure which was harder-- watching him get sick, or being without him now. It's impossibly painful to imagine, as a 22-year-old woman, describing my father to the man I'm going to marry, since he's probably never met him and would have no frame of reference for this ridiculous, loyal, didactic weirdo who had so shaped the way I turned out. Even worse, to have to tell my children how much "Grandpa would have LOVED you," the way my Dad used to talk about his father. I resent that the easiest image to recall in my mind was him in Hospice-- 50 lbs lighter, eyes half closed, mouth cocked open, shallow contractions of his lungs accompanied by faint rattling sounds, skin simultaneously cold and clammy on top with a current of hot magma underneath. But I would have given anything to see the suffering stop. Those days when I would wake him up at 8 to get him in the Hoyer, and into his wheelchair, and he would say, "Why should I get out of bed today?" and I couldn't think of an answer; those moments when he would think of a joke and not be able to say it out loud because the punchline would make him laugh so hard he could barely breathe; the times when he would say "OW!" and I would ask him to tell me what he needed, and he would struggle for minutes to form a full sentence instead of answering my yes or no questions, just to resign to looking to the floor, and whispering with drunken enunciation "nevermind."
I'm sure this isn't the post a person currently suffering or watching someone suffer would want to read. I would never want my father to think he was a burden to us. It just feels good to be honest, and I feel better when I see other people being honest. I hope your experience, whatever it is, is less traumatic, and that you and your loved ones have adequate time to make necessary arrangements and say your goodbyes. I want to make some part of my life, however small, devoted to ALS/MND support, care, relief, lobbying, volunteering, to bring some kind of respite to families who have seen the hardships I've seen. I have a newfound zest for life, and appreciation for every sip of water that doesn't need to be thickened, every step I take without a walker, every time I roll over and get tangled in my blankets yet am able to yank myself out. I want to share my gratitude for my father with anyone I can, and since there are so few of us in the world, I want to share it with you, whoever you are. I know how it feels when you think nobody would understand what you're going through, and that you wouldn't wish knowing this journey on anyone, which leads to isolation and feeling like a burden. However, I hope you'll understand my journey, and tell me about yours if it will lessen your hurt.
All I have left of my dad is his lust for life, his adoration for nature and camping, his obsession with rollercoasters, his stubbornness, his love of literature, and his weird sense of humor. But all I have is more than enough, because I feel his fierce love for me every day of my life.
My father's name is Mark T. Hoops. I'm not sure yet if it's unhealthy for me to use the present tense, but there will never be another father to me. He was the most energetic, vivacious, interesting, gregarious, outgoing, charismatic, and intelligent people I should ever hope to know. He was very well loved and respected in the communities in which he worked and lived. He was a lawyer for NYS in the Attorney General's office, through which he earned three superior service awards. He was the president of our homeowners' association. He was a member of the local rod and gun club and had an extensive collection of rifles, shotguns and handguns (though he had overwhelmingly liberal tendencies). He started to slow down around August of 2014 (a week after he helped me move into my new apartment-- mattress and bookcases and all). We hoped it was Lyme, because all the doctors said "this is happening much too quickly to be a degenerative MND. We'll keep testing."
But, by October, my Dad was falling a lot. He was no longer able to get to work, so he would spend whole days in our finished basement, next to the pellet stove and computer, skipping meals and trips to the bathroom because his "500-lb lead arms and legs" would make getting up the stairs an ordeal.
Finally he was referred to an ALS specialist at Columbia, and we got the EMG results on October 28 (I remember, because I was setting up for a Halloween party with my friends when I got the phone call from my mom). I have a feeling my Dad had figured it out long before then... he was always the first to research something he didn't understand. I remember all I could say was, "that's it? that's the only thing it can be?", thinking, "this is the worst case scenario." I have a tendency to wax macabre, but in this case, my preparing for the worst was only practical. A close mentor of mine also had ALS for about 5 years, and passed in 2012. Watching her get sick was the hardest thing I'd done, and I only visited a few times. Little did I know I would be living every day with it.
The next time I saw him was November 18 at my cousin's wedding. Despite the hilarious festivities and having some of my best friends and family there, I was beside myself. Here, less than a month after diagnosis, my father's voice was barely a whisper. He needed a walker to get to the bathroom, and spent the party in a wheelchair. He would moan at night in the hotel room next to mine because he needed help to turn over on his side. It was then I knew that my dad would not be there to wish me a happy 22nd birthday in March. I was right.
My mom was working full time and taking care of him whenever she was home, sacrificing sleep for his comfort. on the 21st, she was on her way home at 11 am, and fell asleep about a mile from our front door. She cracked 7 ribs and broke her ankle in 3 places. It became clear that I was needed at home. I deferred my Masters degree studies until the following semester, left for Thanksgiving and did not return for finals. My dad received his medical bed and ALS lift chair, and those were the places he and my mother slept. She needed help to change her clothes. He needed help to do literally everything. I was within and without.
There is so much that happened in my family and in my life in those weeks I spent at home, and most of it I haven't processed enough to put into words. I hope some day I can talk about it without rambling, crying or otherwise becoming resentful and upset.
Suffice it to say, when I went back to school in late January, I was happy to be leaving this toxic place of sickness. My mother was getting back on her feet, and my Dad's needs became limited because he was no longer able to communicate wanting more coffee or needing his butt scratched. At that point, he wanted to be moved as little as possible, as the spasms and fasiculations had become so constant and incredibly painful that any stimulation would make it that much worse. So, he took the remote and watched all of the Blacklist and American Horror Story on Netflix (he was never much for TV, but developed a taste for it).
When I left, I said goodbye. I told my Dad it was okay and I loved him. I was the only person he really tried to communicate with, and he told me everything I needed to hear from him.
School began, I threw myself into my studies, and was fine for a few weeks. Then the snow came. My mom would tell me over the phone that nurses were canceling, she was receiving less help from neighbors and family for getting him in and out of bed. My brother and I visited February 7, for Steve's birthday, and we had "the talk" about Hospice. We made the decision that day, and called the ambulance that night. When I left that day and beat the ambulance, I told him not to wait around to see me again. He just smiled (as much as he could smile) and mouthed "okay"
I was relieved when he went to a place where he got all the help he needed. After the perfunctory 3-night hospital stay, he arrived at hospice, used assistive tech to say "I came here to find peace, and I have. Morphine, please." He went into a medical coma that night, and stayed "under" until February 21st, at 4 pm. He had had a visit from the family dog that day (who was quite attached to him through his illness), and whatever involuntary muscles kept his chest rising and falling gave out, sometime during a recording of Beethoven's Fifth symphony, his all-time favorite piece.
I'm not sure which was harder-- watching him get sick, or being without him now. It's impossibly painful to imagine, as a 22-year-old woman, describing my father to the man I'm going to marry, since he's probably never met him and would have no frame of reference for this ridiculous, loyal, didactic weirdo who had so shaped the way I turned out. Even worse, to have to tell my children how much "Grandpa would have LOVED you," the way my Dad used to talk about his father. I resent that the easiest image to recall in my mind was him in Hospice-- 50 lbs lighter, eyes half closed, mouth cocked open, shallow contractions of his lungs accompanied by faint rattling sounds, skin simultaneously cold and clammy on top with a current of hot magma underneath. But I would have given anything to see the suffering stop. Those days when I would wake him up at 8 to get him in the Hoyer, and into his wheelchair, and he would say, "Why should I get out of bed today?" and I couldn't think of an answer; those moments when he would think of a joke and not be able to say it out loud because the punchline would make him laugh so hard he could barely breathe; the times when he would say "OW!" and I would ask him to tell me what he needed, and he would struggle for minutes to form a full sentence instead of answering my yes or no questions, just to resign to looking to the floor, and whispering with drunken enunciation "nevermind."
I'm sure this isn't the post a person currently suffering or watching someone suffer would want to read. I would never want my father to think he was a burden to us. It just feels good to be honest, and I feel better when I see other people being honest. I hope your experience, whatever it is, is less traumatic, and that you and your loved ones have adequate time to make necessary arrangements and say your goodbyes. I want to make some part of my life, however small, devoted to ALS/MND support, care, relief, lobbying, volunteering, to bring some kind of respite to families who have seen the hardships I've seen. I have a newfound zest for life, and appreciation for every sip of water that doesn't need to be thickened, every step I take without a walker, every time I roll over and get tangled in my blankets yet am able to yank myself out. I want to share my gratitude for my father with anyone I can, and since there are so few of us in the world, I want to share it with you, whoever you are. I know how it feels when you think nobody would understand what you're going through, and that you wouldn't wish knowing this journey on anyone, which leads to isolation and feeling like a burden. However, I hope you'll understand my journey, and tell me about yours if it will lessen your hurt.
All I have left of my dad is his lust for life, his adoration for nature and camping, his obsession with rollercoasters, his stubbornness, his love of literature, and his weird sense of humor. But all I have is more than enough, because I feel his fierce love for me every day of my life.
