How about my mother telling me she's going to knock my teeth out? If she had her vision and could move on her own, I would be worried. But she doesn't. While I love my mother with my whole being, I sure don't like her. Her condition is so deteriorated that she is miserable. Her mind doesn't work well quite a bit of the time so we have to take it with a grain of salt. But salt in a wound burns. And sometimes -- many times -- she is exhausting and hurtful. She'd be appalled if she knew how she was which is the only saving grace in this journey. I know she isn't who she really is.
Yesterday when I stopped by to check on them, she was picking fights. My dad holds her hand (he's commanded to do so) and then takes her nitpicking him mercilessly. His expressions was exhaustion and tears. I remember in the hospital last week how much better he looked. It's clear that my mother both physically and emotionally wears him out. I am torn about the idea of placing her in a home. She gripes about the care we give her but I know in a home she'd be placed in an adult undergarment, and not be cared for as she's used to being cared for. No doubt she her white count would sky rocket and she'd end up in one organ failure or another rather quickly.
So we carry on. Yesterday she had Dad calling to order pecans... 3 large bags from one of the specialty nut companies on the east coast. She heckled him while he was on the phone so he finally told the person he'd have to call back. When he got off the phone, she denied doing such. Lori asked her why she needed pecans and she said to bake. Dad asked her how in the hell she was going to bake and she said she forgot she was blind. This is the world we live in. How in the damn world can a person forget he or she is blind? But then she sees some movement and could detect Lori nudging Dad's foot to go along with her.
My maternal grandfathers was a mean man when he was old. But he too was sick. He'd eat early and go to bed before sunset. This is my mother now. If I arrive at their house by 6:30, they are in bed with the tv on. She's taken to pouting as well. When she gets mad and isn't being given adequate attention, she uses her lift chair to stand up, then uses her walker to go to the bedroom away from us all. She's antisocial with us but still craves attention of outsiders. Sadly, few come to visit. She isn't mean to them at all but they are all busy and its easy to ignore a shut-in. Did I just say my mother is a shut-in?
Yesterday she told my dad it's time for her to put her plan in action. He was forbidden from telling us what that plan may be. I can only speculate but it hurts too much to go very far down that road. Instead I'll be very busy today planning his doc appointments and lab work for next week and arranging my work schedule around it. I also need to purchase him a new pulse ox reader. I need to call about respite care on the outside hope that a weekend a month at a facility will help the situation. I need to take his drug paperwork to another doctor and see about ordering a refill of that $3k Vfend. Someday, I'll rest.
Tuesday, December 28, 2010
Thursday, December 23, 2010
Time flies
but sometimes it stands still. While this seems like a Saturday over and over again, kind of like the Groundhog Day movie, it really is just Thursday before Christmas. The eve of Christmas Eve. I never really did any shopping this year. Nor do I have anything out other than my tree and the manger. I thought this week would be when the Christmas spirit swoops in and helps me find renewal. Instead, Pop ended up back in the hospital.
This time it's heart failure exacerbated by another pneumonia. At least this time everything moved quickly and he was discharged tonight. I hate hospitals. They give me headaches. We added up the hospital stays of our parents a while back and it came to something like 9 months of the last 10 years we've had a parent spending the night in the hospital. Yuck.
So I am tired. Thank goodness Jill is game for shopping and has done what little I had her do. And thank goodness my in-laws had Christmas last Saturday before Derek and Gaby headed to Peru. Tomorrow will be a strange Christmas. Jill will help me make spaghetti... the kind we like making together. We even hand crush our tomatoes. And we use pork and sirloin. And the bread crumbs soak in milk. And the fresh basil off the window sill. Anyhow, it's an all day production but is a wonderful comfort food. We'll sit in the dining room and probably open a bottle of wine. I hope we can enjoy the evening. I haven't figured out where Church fits in this year. I'm just tired of everything -- church included. Christmas Day will be quiet. Jill's bf will stay overnight with us for some odd reason. We aren't having gifts that morning. I suppose I can make a big breakfast. Mostly the day will be spent making my grandmother's dressing to take to my parents.
It's strange how things go. Every year my sisters and I made a big hoop-dee-do about taking family pictures for funeral cards. This year we probably won't do that. Death seems imminent. Though my Dad is more likely to succumb the soonest, my mother is the most miserable. It hurts to know her existence is such and I wish I could help her. But I'm afraid she's becoming mean spirited. I know it isn't her fault and she doesn't mean to sound and say what she does. Dementia is a cruel thing. What bugs me though is how she can be so very lucid and then in the next breath completely looloo. Tonight my Dad told me in private that he doesn't know how much more of her he can take. He's to his breaking point and had only been home a couple of hours.
My parents have always been my rock. These last 11 years since her first stroke, my mom has thanked me for being the grandmother to my nieces and nephews... the grandmother she'd always hoped to be but that a stroke robbed her of. I wonder now if she is resentful of me. Sometimes it feels like it. Heck, most of the time it feels like it. I don't understand why she is so angry at me. But I suppose I am strong enough to handle it if I can keep myself thinking that it spares my Dad and sisters. I don't think that's the case any more.
Where oh where did a regular life go? Why do so many people get off easy having parents who live to a ripe old age and then keeling over? Why do some families have so much suffering? I think what causes me the most disillusionment is knowing that my parents worked very long and hard jobs to provide for us and passed on to us a strong, invincible work ethic. Yet others who have none seem to have an easy path. I know, I know. Life isn't fair. But damn it, sometimes it'd be nice to not have the end of a stick. All I want is for my mom to see again. God, is that too much? Can you give us a little break here? She prayed hours on end for a miracle to be able to walk and what she got instead was another stroke that took her vision.
It's hard to have faith some days.
This time it's heart failure exacerbated by another pneumonia. At least this time everything moved quickly and he was discharged tonight. I hate hospitals. They give me headaches. We added up the hospital stays of our parents a while back and it came to something like 9 months of the last 10 years we've had a parent spending the night in the hospital. Yuck.
So I am tired. Thank goodness Jill is game for shopping and has done what little I had her do. And thank goodness my in-laws had Christmas last Saturday before Derek and Gaby headed to Peru. Tomorrow will be a strange Christmas. Jill will help me make spaghetti... the kind we like making together. We even hand crush our tomatoes. And we use pork and sirloin. And the bread crumbs soak in milk. And the fresh basil off the window sill. Anyhow, it's an all day production but is a wonderful comfort food. We'll sit in the dining room and probably open a bottle of wine. I hope we can enjoy the evening. I haven't figured out where Church fits in this year. I'm just tired of everything -- church included. Christmas Day will be quiet. Jill's bf will stay overnight with us for some odd reason. We aren't having gifts that morning. I suppose I can make a big breakfast. Mostly the day will be spent making my grandmother's dressing to take to my parents.
It's strange how things go. Every year my sisters and I made a big hoop-dee-do about taking family pictures for funeral cards. This year we probably won't do that. Death seems imminent. Though my Dad is more likely to succumb the soonest, my mother is the most miserable. It hurts to know her existence is such and I wish I could help her. But I'm afraid she's becoming mean spirited. I know it isn't her fault and she doesn't mean to sound and say what she does. Dementia is a cruel thing. What bugs me though is how she can be so very lucid and then in the next breath completely looloo. Tonight my Dad told me in private that he doesn't know how much more of her he can take. He's to his breaking point and had only been home a couple of hours.
My parents have always been my rock. These last 11 years since her first stroke, my mom has thanked me for being the grandmother to my nieces and nephews... the grandmother she'd always hoped to be but that a stroke robbed her of. I wonder now if she is resentful of me. Sometimes it feels like it. Heck, most of the time it feels like it. I don't understand why she is so angry at me. But I suppose I am strong enough to handle it if I can keep myself thinking that it spares my Dad and sisters. I don't think that's the case any more.
Where oh where did a regular life go? Why do so many people get off easy having parents who live to a ripe old age and then keeling over? Why do some families have so much suffering? I think what causes me the most disillusionment is knowing that my parents worked very long and hard jobs to provide for us and passed on to us a strong, invincible work ethic. Yet others who have none seem to have an easy path. I know, I know. Life isn't fair. But damn it, sometimes it'd be nice to not have the end of a stick. All I want is for my mom to see again. God, is that too much? Can you give us a little break here? She prayed hours on end for a miracle to be able to walk and what she got instead was another stroke that took her vision.
It's hard to have faith some days.
Sunday, December 12, 2010
Busy week
I feel liberated today. What a hard week this was for me. The hardest class I've ever taken... final yesterday... required far more attention than I've ever given a class in my entire life. Let's toss in a hectic work schedule working 7 am to 5 pm and 3 nights of work as well teaching at local businesses. Did I mention family? That's what got me to this process in the first place so let me get back to the meat of the matter.
Dad had 2 visits with docs on Tuesday. The infectious disease doc is Lebanese and worked at MD Anderson 3 years. He was very thorough and very personable. We really like him. He said dad has a mold infection in the lungs and it is treatable if it isn't colonized. So the treatment with meds (twice daily) is $3k a month with insurance covering $2k. The doc wants us to apply for Pfizers RSV program for assistance. So we'll do that. He explained that he has to go back each month for liver function tests. After 3 months, some progress on a CT of the chest should be seen. If no progress (shrinking) then the mold is colonized or cancer is involved. This guy was nothing short of brilliant in our book. He also was smart enough to order dad's bloodwork the week prior to his next visit so they'd have the data handy when he sees us.
This clinic is wonderful. After Doc 1 left, the nurse came in and got us ready for Doc 2. Same room, no shuttling us around. Doc 2, the pulmonologist came in. Another great doc from Syria who has worked at Sloan-Kettering. This is the doc we've worked with since Oct 1. He's a charmer as well -- very sharp and personable. Then again, my Pop is one sweet little old man so it's hard not to like him! Dr. 2 told us that the 16 biopsies done on Black Friday (shopping, not sinister) hadn't revealed anything helpful but that Dr 1 was the one who said -- hey, this looks like it could be Aspergillus. It's not rare here but its not common either. Both docs conferred and so that's what we're treating at this point in time. Dr. 2 ordered the chest CT for March.
Now as to the state of our country's health care. Why on earth do brilliant, talented doctors come to the U.S.? Because we have the best health care research, development and delivery system in the world. Ask any of the foreign-born docs (which I've been doing) and they'll say so. So Congress, keep your hands out of my healthcare!
The final exam yesterday was terribly hard. If I pass it, it will be a miracle. I have a low D in that class going into the exam. I never made anything other than A's and occasional B's. This is definitely hard! But even if I have to retake the course, I am over halfway done with the coursework for my doctorate in Workforce Development Education. Technically, I could be done with the classroom work by next December.
The class I am leading to Peru in May to work at Huaca Pucllana is progressing. We had our first TeamPeru meeting on Friday afternoon. Jill is going -- and I'm really excited about that!
Jill is spending more time at her bf's apartment than at home. I've not noticed much in the last week since I was working or studying nearly 24/7. I have not bought a single holiday gift. Steve's birthday was yesterday -- a ripe 49. We're going out to lunch with his parents, Jill and her bf Adam, and a nephew at noon today.
Derek checked in with us last night. We'll do an early Gordon family Christmas on Dec 18 since he and Gaby are leaving for Lima on Dec 21. This will be a wedding planning trip for them. And I've agreed to pay for their dinner at Huaca Pucllana if they'll do some advance work for me at the site. When they return from Lima on January 7, Gaby's sister Beatriz will be with them. She's working on a veterinary degree and it's summer in Peru. So she's going to stay in the U.S. and shadow animal husbandry during those 2 months. Beatriz will also be our Lima hostess when I take my class so it will be good to get to know her better than we currently do. Two weeks in early February she will be here in Fort Smith with us while Derek and Gab are still in OKC. She'll be working at the farm with the cattle.
So we're busy and I'm tired. But only 3 more days of hard work this coming week and I can throttle back until January 4. Then it's all hands on deck as more contractual training for businesses gets started, regular teaching is back on, and I'm back to taking 2 classes of doctoral work.
My hairdresser of 10 years is moving to Dallas. She keeps reminding me this doctorate is for my grandkids. The ones I don't have yet. So that I can find work in South America if that's where they are living. It's a good plan. Maybe I'll start working on my Spanish again during this break from studying.
Dad had 2 visits with docs on Tuesday. The infectious disease doc is Lebanese and worked at MD Anderson 3 years. He was very thorough and very personable. We really like him. He said dad has a mold infection in the lungs and it is treatable if it isn't colonized. So the treatment with meds (twice daily) is $3k a month with insurance covering $2k. The doc wants us to apply for Pfizers RSV program for assistance. So we'll do that. He explained that he has to go back each month for liver function tests. After 3 months, some progress on a CT of the chest should be seen. If no progress (shrinking) then the mold is colonized or cancer is involved. This guy was nothing short of brilliant in our book. He also was smart enough to order dad's bloodwork the week prior to his next visit so they'd have the data handy when he sees us.
This clinic is wonderful. After Doc 1 left, the nurse came in and got us ready for Doc 2. Same room, no shuttling us around. Doc 2, the pulmonologist came in. Another great doc from Syria who has worked at Sloan-Kettering. This is the doc we've worked with since Oct 1. He's a charmer as well -- very sharp and personable. Then again, my Pop is one sweet little old man so it's hard not to like him! Dr. 2 told us that the 16 biopsies done on Black Friday (shopping, not sinister) hadn't revealed anything helpful but that Dr 1 was the one who said -- hey, this looks like it could be Aspergillus. It's not rare here but its not common either. Both docs conferred and so that's what we're treating at this point in time. Dr. 2 ordered the chest CT for March.
Now as to the state of our country's health care. Why on earth do brilliant, talented doctors come to the U.S.? Because we have the best health care research, development and delivery system in the world. Ask any of the foreign-born docs (which I've been doing) and they'll say so. So Congress, keep your hands out of my healthcare!
The final exam yesterday was terribly hard. If I pass it, it will be a miracle. I have a low D in that class going into the exam. I never made anything other than A's and occasional B's. This is definitely hard! But even if I have to retake the course, I am over halfway done with the coursework for my doctorate in Workforce Development Education. Technically, I could be done with the classroom work by next December.
The class I am leading to Peru in May to work at Huaca Pucllana is progressing. We had our first TeamPeru meeting on Friday afternoon. Jill is going -- and I'm really excited about that!
Jill is spending more time at her bf's apartment than at home. I've not noticed much in the last week since I was working or studying nearly 24/7. I have not bought a single holiday gift. Steve's birthday was yesterday -- a ripe 49. We're going out to lunch with his parents, Jill and her bf Adam, and a nephew at noon today.
Derek checked in with us last night. We'll do an early Gordon family Christmas on Dec 18 since he and Gaby are leaving for Lima on Dec 21. This will be a wedding planning trip for them. And I've agreed to pay for their dinner at Huaca Pucllana if they'll do some advance work for me at the site. When they return from Lima on January 7, Gaby's sister Beatriz will be with them. She's working on a veterinary degree and it's summer in Peru. So she's going to stay in the U.S. and shadow animal husbandry during those 2 months. Beatriz will also be our Lima hostess when I take my class so it will be good to get to know her better than we currently do. Two weeks in early February she will be here in Fort Smith with us while Derek and Gab are still in OKC. She'll be working at the farm with the cattle.
So we're busy and I'm tired. But only 3 more days of hard work this coming week and I can throttle back until January 4. Then it's all hands on deck as more contractual training for businesses gets started, regular teaching is back on, and I'm back to taking 2 classes of doctoral work.
My hairdresser of 10 years is moving to Dallas. She keeps reminding me this doctorate is for my grandkids. The ones I don't have yet. So that I can find work in South America if that's where they are living. It's a good plan. Maybe I'll start working on my Spanish again during this break from studying.
Saturday, December 4, 2010
Catching up
Let's see... It was a busy week. Dad got discharged late on Wednesday night and has been home now recuperating as best he can. His 1 new med for the presumed fungal infection (mold) in his lungs is $974 (nine hundred seventy four dollars, no typo) AFTER insurance. The doc said he would be on it a long time... that price was for a 30 day supply. That's just nuts.
We go back to the doc on Tuesday to see first the infectious disease doc and then the pulmonologist. Hopefully there is news of some sort. Just news would be good.
As for my life, I'm slowly coming back down to earth. My 2 papers are written and submitted. I have an enormous final on Dec 11. Three hours of time permitted in a proctored setting. I have no clue what the material is anymore. I think the crisis of my dad's health erased my memory because every bit of it is foreign to me now. I no longer remember the formulas or how to do what on the graphing calculator. So tomorrow I am going to my office to hole up away from society. If I can get in 8 hours of rock hard study... and then maybe another 4 hours Monday.... and continue with 2 hours or so each night... then a full day on Friday. Hopefully I can pull a C out of the magician's hat. That's all I need to get this class done. But but but.... the last time I had a test I'd been up all night with dad in ICU so who knows if he'll make it through this week healthy or not. It's a precarious situation but I'll just have to plug on ahead.
The rest of my sloppy joe today involves my almost grown kids. Well, I guess they are grown. Derek and Gaby have been here since yesterday and will go back to OKC in the morning (just in time for me to go study). Jill has been helping Adam readjust to life post-Afghanistan and get settled in his apartment. He'll find out next week if he gets into my university. Hopefully he can get a few semesters completed before he gets sent off to a war again. Poor guy is 24 but has been able to get any more than 1 semester of college completed because he's been sent to Iraq and then back to stateside and then to Afghanistan. Maybe this time his luck will be better. Not that he wasn't lucky -- not a single casualty in his unit. But the interruption to his education is the most frustrating for him.
The light in my tunnel (not at the end) is the trip we're planning for students next May. Working at a dig site in Peru gives me plenty of more interesting busy work when I feel like I'm at the end of my rope. In fact, just sitting here now I can say -- wow, I'll have another semester behind my in this doctoral program by the time May rolls around. And Jill is going with me. Even her bf Adam may apply to go since the course is approved for his major.
And so it goes... another day lived quite fully. I'm tired and out of hangers. So no ironing tonight for me!
We go back to the doc on Tuesday to see first the infectious disease doc and then the pulmonologist. Hopefully there is news of some sort. Just news would be good.
As for my life, I'm slowly coming back down to earth. My 2 papers are written and submitted. I have an enormous final on Dec 11. Three hours of time permitted in a proctored setting. I have no clue what the material is anymore. I think the crisis of my dad's health erased my memory because every bit of it is foreign to me now. I no longer remember the formulas or how to do what on the graphing calculator. So tomorrow I am going to my office to hole up away from society. If I can get in 8 hours of rock hard study... and then maybe another 4 hours Monday.... and continue with 2 hours or so each night... then a full day on Friday. Hopefully I can pull a C out of the magician's hat. That's all I need to get this class done. But but but.... the last time I had a test I'd been up all night with dad in ICU so who knows if he'll make it through this week healthy or not. It's a precarious situation but I'll just have to plug on ahead.
The rest of my sloppy joe today involves my almost grown kids. Well, I guess they are grown. Derek and Gaby have been here since yesterday and will go back to OKC in the morning (just in time for me to go study). Jill has been helping Adam readjust to life post-Afghanistan and get settled in his apartment. He'll find out next week if he gets into my university. Hopefully he can get a few semesters completed before he gets sent off to a war again. Poor guy is 24 but has been able to get any more than 1 semester of college completed because he's been sent to Iraq and then back to stateside and then to Afghanistan. Maybe this time his luck will be better. Not that he wasn't lucky -- not a single casualty in his unit. But the interruption to his education is the most frustrating for him.
The light in my tunnel (not at the end) is the trip we're planning for students next May. Working at a dig site in Peru gives me plenty of more interesting busy work when I feel like I'm at the end of my rope. In fact, just sitting here now I can say -- wow, I'll have another semester behind my in this doctoral program by the time May rolls around. And Jill is going with me. Even her bf Adam may apply to go since the course is approved for his major.
And so it goes... another day lived quite fully. I'm tired and out of hangers. So no ironing tonight for me!
Tuesday, November 30, 2010
Tuesday
I am glad I've made it to this point on this day of this week of this month. Tonight was the last night of one of my doctoral classes. Mondays and Tuesdays this entire semester I've been at work at 7-ish a.m. and in class teaching or as a student all day until 8:30 p.m. I'm exhausted mentally and physically and feel a panic attack just under the surface. That's actually why I'm here writing now. To talk myself back from the ledge.
How on earth are you doing this? That's what my peers are asking me. I suppose being pragmatic is the way I'm doing it. Just doing what has to be done. So working full time with the long hours nights and weekends teaching anywhere for anyone who will sign a contract. Trying my hardest to get through 2 doctoral classes each semester. And this semester getting slammed with doctoral level inferential statistics. I was earning a B until October 1 when Dad first collapsed. It's been a downward spiral for him and my grade ever since.
The class that ended tonight was the easier of the 2. Yes, I have one final paper that is due in a week. But that is one I can do my in sleep. But this stats class and research project is massive. My topic? It's quite entertaining if only I had time to laugh: Statistically similarities between those who attend church weekly and those who do not attend church weekly as it pertains to sexual behavior as a thrill-seeking activity. I kid you not. Crazy! I'd be enjoying it if I didn't have my parents lives in shambles right now.
So the update on them. Today Dad was to have another needle biopsy. Lori and I arrived early to be with him. He refused to have the procedure because the 2 tries last week caused his lung to collapse. He's not interested in going through that again. The nurse left for us to have "private time to discuss the decision" which I took it to mean, hey look -- this is serious crap we're talking about now. So Lori and I had Dad call Mom to tell her his decision. His eyes got misty and his mouth was down-turned on both corners. I believe if we weren't there he'd have cried. But I understand his point. Mom suggested going to other hospitals and searching for a doc that could do something. But Dad reminded her that it isn't the doc's but his lungs that can't hold out. As soon as he was off the phone, he was at peace with the decision.
I asked him a couple of times if he was certain. I told him I didn't want him to have buyer's remorse in a few weeks not having a proper diagnosis. He said he understood. He also said something along the lines that he could be around a couple of more years and be better than if he was going through chemo or radiation or he could be gone more quickly. But the less suffering for him the better. I have to agree.
So Lori needed to breathe by this point. So she headed to Waffle House to pick up a breakfast order for him. I found the number, plugged it into his phone, and he called and placed his order. Lori said that when she arrived, his friends and the staff gathered around for an update on Dad. They wouldn't let her pay for the food and sent a cup of coffee along as well -- a cup that had sweet get well wishes and hearts drawn on it. Oh, my Daddy is a love man! He was so happy to see the food and hear about his friends.
I noticed at one point he was tapping his fingers on the table. Drumming them sort of. I asked if he was ok or nervous or relieved. He said relieved... that he felt at peace with his decision. And so it is. He has peace tonight.
Tomorrow they will clamp the chest tube in the morning. Then in the afternoon take a chest x-ray. Then maybe tomorrow night he can go home -- or at least by Thursday morning.
Mom is at a loss. This is her life long best friend we're talking about. I feel so bad for the 2 of them. Now I really mean my blog's title -- the part about sloppy joes. I hate this stuff. I buried so many people when I was in HR. I was at the hospital when people turned off machines. I helped grieving families arrange funerals for children who had died. I attended cremations. But I am not ready for this.
Does it make it worse that I am struggling in my doctoral program? I'm not sure. I'm numb all the way around. But in a way, each horrible path gives me a brief respite from the other. Regardless of what happens, the world will go on even if I don't. Even when I don't. Right now, at 11:27 p.m., I wish I was with either my Mom or Dad right now. I feel like a 6 year old who is afraid of the dark. I'm a control freak and I have no control.
How on earth are you doing this? That's what my peers are asking me. I suppose being pragmatic is the way I'm doing it. Just doing what has to be done. So working full time with the long hours nights and weekends teaching anywhere for anyone who will sign a contract. Trying my hardest to get through 2 doctoral classes each semester. And this semester getting slammed with doctoral level inferential statistics. I was earning a B until October 1 when Dad first collapsed. It's been a downward spiral for him and my grade ever since.
The class that ended tonight was the easier of the 2. Yes, I have one final paper that is due in a week. But that is one I can do my in sleep. But this stats class and research project is massive. My topic? It's quite entertaining if only I had time to laugh: Statistically similarities between those who attend church weekly and those who do not attend church weekly as it pertains to sexual behavior as a thrill-seeking activity. I kid you not. Crazy! I'd be enjoying it if I didn't have my parents lives in shambles right now.
So the update on them. Today Dad was to have another needle biopsy. Lori and I arrived early to be with him. He refused to have the procedure because the 2 tries last week caused his lung to collapse. He's not interested in going through that again. The nurse left for us to have "private time to discuss the decision" which I took it to mean, hey look -- this is serious crap we're talking about now. So Lori and I had Dad call Mom to tell her his decision. His eyes got misty and his mouth was down-turned on both corners. I believe if we weren't there he'd have cried. But I understand his point. Mom suggested going to other hospitals and searching for a doc that could do something. But Dad reminded her that it isn't the doc's but his lungs that can't hold out. As soon as he was off the phone, he was at peace with the decision.
I asked him a couple of times if he was certain. I told him I didn't want him to have buyer's remorse in a few weeks not having a proper diagnosis. He said he understood. He also said something along the lines that he could be around a couple of more years and be better than if he was going through chemo or radiation or he could be gone more quickly. But the less suffering for him the better. I have to agree.
So Lori needed to breathe by this point. So she headed to Waffle House to pick up a breakfast order for him. I found the number, plugged it into his phone, and he called and placed his order. Lori said that when she arrived, his friends and the staff gathered around for an update on Dad. They wouldn't let her pay for the food and sent a cup of coffee along as well -- a cup that had sweet get well wishes and hearts drawn on it. Oh, my Daddy is a love man! He was so happy to see the food and hear about his friends.
I noticed at one point he was tapping his fingers on the table. Drumming them sort of. I asked if he was ok or nervous or relieved. He said relieved... that he felt at peace with his decision. And so it is. He has peace tonight.
Tomorrow they will clamp the chest tube in the morning. Then in the afternoon take a chest x-ray. Then maybe tomorrow night he can go home -- or at least by Thursday morning.
Mom is at a loss. This is her life long best friend we're talking about. I feel so bad for the 2 of them. Now I really mean my blog's title -- the part about sloppy joes. I hate this stuff. I buried so many people when I was in HR. I was at the hospital when people turned off machines. I helped grieving families arrange funerals for children who had died. I attended cremations. But I am not ready for this.
Does it make it worse that I am struggling in my doctoral program? I'm not sure. I'm numb all the way around. But in a way, each horrible path gives me a brief respite from the other. Regardless of what happens, the world will go on even if I don't. Even when I don't. Right now, at 11:27 p.m., I wish I was with either my Mom or Dad right now. I feel like a 6 year old who is afraid of the dark. I'm a control freak and I have no control.
Sunday, November 28, 2010
Sunday Football
I need a vacation from the long weekend. Going back seems to easy but then how will I manage to parent-sit, work, and study. Lori and I tag-teamed Mom today. Lori took her to the hospital to visit Dad. We swapped after about an hour and I stayed with Mom another 2 hours at the hospital then took her home. I'm physically exhausted now. I thought I was yesterday. Nope, today is worse. Dad's condition hasn't changed. He's in a good mood and hasn't gotten too agitated about going home. I'm eager for the report tomorrow to give us an idea as to how much longer he'll be in the hospital this time. I'm also eager to hear if his chest tube can be removed. He'll be able to shower once that is done and overall will feel more comfortable. As for biopsy results, we don't look for anything for a few more days. The fungal and bacterial results will still be a few weeks away. What we are interested in hearing is whether or not his current pulmonologist will remain on his case or if -- because the cause of the growing dark area can't be determined -- he'll be transferred to a different specialist with perhaps another idea so to how to proceed.
Progress can't be hurried. Maybe in this case, hurry is bad thing anyhow. I always think it's foolish for people to say "I wish it were Friday." Whose to say they'll be alive on Friday? Or that they'll still be employed on Friday? I'm learning to be content with and make the most of each day. Right now, for me, that means I need rest.
Progress can't be hurried. Maybe in this case, hurry is bad thing anyhow. I always think it's foolish for people to say "I wish it were Friday." Whose to say they'll be alive on Friday? Or that they'll still be employed on Friday? I'm learning to be content with and make the most of each day. Right now, for me, that means I need rest.
Saturday, November 27, 2010
When a BM is a treat
You know that life is way too complicated when a bowel movement is to be celebrated. Well, anyhow, that's how my Dad felt tonight. After a terrific televised game of the Hogs beating LSU, the hospital was swarming with activity. I guess most people were home watching the tv and the med staff were hiding in closets because as soon as it ended, it was a mad house! Six different nurses or technicians plus the pulmonolgist in the span of 45 minutes. Woohoo! Dad's chest tube was clamped because his x-ray this am revealed no collapse. But then the pulmonologist on call wanted it unclamped so the suction to the chest would continue "just in case" they have to biopsy more on Monday. Well, well, that was news. The official pulmonologist had led us to believe clamp today, pull tube out after another good x-ray tomorrow. Nonetheless, I won't argue and trust they know best.
Dad's hiatal hernia and COPD makes eating difficult - especially in a semi-reclining position. Hence, he's not eaten much in a few days. Tonight Lori and I had him at about 90 degrees and he ate 2 packages of pb crackers and drank half a coke. Afterwards, and it seemed like warp speed, he was ready to try walking to the restroom. None of that bedpan mess for him. So we snaked tubes here and there and he was proudly successful of using the restroom like a man.
After tucking him in for the night, I left to visit Mom. She was in bed as well. In the den next to her bedroom were Kris's 2 oldest and about 10 friends watching the football games. They were staying nearby in case Mom needed something and so that she wouldn't feel alone or spooked.
Derek and Gaby are back in OKC now. Jill texted from Chicago. Tomorrow she and her bf Adam go to Soldier Field to watch their Bears play the Eagles... Michael Vick's new team. I'd love to be at that game but not at 30 degrees outdoors! Soon my home will be back to the workweek. I've much to do to be ready including a research paper due tomorrow at midnight. But at least today was good. I'm really sleepy and cuddling with my hubby sounds so wonderful. We NEVER seem to get peace and quiet these days. But all is right (enough) with the world that I'm headed that way now. No hanky panky, just plain ole fashioned cuddle and sleep. :-)
Dad's hiatal hernia and COPD makes eating difficult - especially in a semi-reclining position. Hence, he's not eaten much in a few days. Tonight Lori and I had him at about 90 degrees and he ate 2 packages of pb crackers and drank half a coke. Afterwards, and it seemed like warp speed, he was ready to try walking to the restroom. None of that bedpan mess for him. So we snaked tubes here and there and he was proudly successful of using the restroom like a man.
After tucking him in for the night, I left to visit Mom. She was in bed as well. In the den next to her bedroom were Kris's 2 oldest and about 10 friends watching the football games. They were staying nearby in case Mom needed something and so that she wouldn't feel alone or spooked.
Derek and Gaby are back in OKC now. Jill texted from Chicago. Tomorrow she and her bf Adam go to Soldier Field to watch their Bears play the Eagles... Michael Vick's new team. I'd love to be at that game but not at 30 degrees outdoors! Soon my home will be back to the workweek. I've much to do to be ready including a research paper due tomorrow at midnight. But at least today was good. I'm really sleepy and cuddling with my hubby sounds so wonderful. We NEVER seem to get peace and quiet these days. But all is right (enough) with the world that I'm headed that way now. No hanky panky, just plain ole fashioned cuddle and sleep. :-)
Friday, November 26, 2010
Thanksgiving Day
I am so tired! Yesterday was a long day of tidying the house and cooking and then entertaining family. I have to give props to my hubby Steve as well as son Derek and his Gaby. They really came through helping me -- especially with Jill absent. She's my right hand when it comes to these things and I miss her being in Chicago this weekend.
It has gotten quite cold and Mom decided to stay home rather than join the usual feast at my house. This meant staying home alone. My aunt Jo, who herself lost her father this year, loaded up 2 plates and took them to have dinner with Mom. What a sweetie that Jo is! I'm sure it was easier for her as well to be away from the craziness that always happens when we get the Hall family together at holidays. My son Derek and Kris's son Tye hooked up a laptop at the hospital and hooked up another to our tv. So we were able to Skype with Dad at dinner time! We heard the doc come in to give dad the plan for his bronchoscopy biopsy and then we even sung Happy Birthday to Dad! I've posted a link on Facebook. My blind uncle Gary has been talking smack for a year now about beating Derek at Wii bowling. So the game was on and the room filled with spectators as we watched Gary throw strike after strike defeating Derek again this year. It's quite entertianing when a blind man outbowls a 20-something.
Once everyone had left, in spite of being exhausted, I headed to the hospital to sit with Dad for a while. He was exhausted from his many visitors. His left lung remain inflated. We talked about the tests that would follow Friday (today). I tidied his room, tucked him in, and watched a few crime scene shows with him before leaving.
This morning my sisters and I (as well as my darling niece Abbie, Lori's daughter) joined Dad as he went for his test. He was in good spirits. I commented that we were the Macy's Day after Thanksgiving Day parade as we marched to the endoscopy section. Mom's brother Eddie joined us.
Dr. Homsi told us the scope appears to be successful in that he retrieve 16 tissue samples. He isn't certain if he was in the precise spot because the area is where the 2 lobes of the left lung come together and there is the membrane that holds them together. But he went every direction he could and took samples along the way. Dad's lung remained inflated and he tolerated the procedure well. Once he was in recovery, the others scampered back to their other activities (work, caring for Mom, etc.) and I stayed with Dad until he was moved back to his room. I was smart enough to remember to ask for the warmed blankets before leaving endoscopy because they don't keep those on the floors. And it's cold today -- frost on the windows cold. So he was toasty and woozy. It will be about 4 hours before he can safely eat or drink. He thought he was awake enough to read the paper but he quickly realized he should just sleep. So I tucked in and left for home.
Gaby, my dearest son's dear fiance, is eager to put up the Christmas tree today. She always does the one at her family's home in Peru but she's not gotten to do that for 2 years now. And I'd be glad to have her do our tree. She seems to think this will be a bonding experience for us but I'm so pooped I think supervising is more in line with my energy today.
All in all, the last 36 hours have been pretty good. I met a future cousin-in-law and her daughter, my uncle Bob's new bride, and a cousin's new baby. Joseph our Taiwanese friend drove in from OKC for the party and our neighbors joined us for a bit. Gary's friend Ina from the center where he lives joined us again this year as well. Izzie (our youngest Westie) loved snuggling in Miss Ina's lap. And I think Ina enjoyed Izzie.
I'd better get that tree and trimmings ready for Gaby to start soon. I'd like a nap before returning to parent duty tonight but that's ok if I don't get it. I'll sleep like a baby tonight!
It has gotten quite cold and Mom decided to stay home rather than join the usual feast at my house. This meant staying home alone. My aunt Jo, who herself lost her father this year, loaded up 2 plates and took them to have dinner with Mom. What a sweetie that Jo is! I'm sure it was easier for her as well to be away from the craziness that always happens when we get the Hall family together at holidays. My son Derek and Kris's son Tye hooked up a laptop at the hospital and hooked up another to our tv. So we were able to Skype with Dad at dinner time! We heard the doc come in to give dad the plan for his bronchoscopy biopsy and then we even sung Happy Birthday to Dad! I've posted a link on Facebook. My blind uncle Gary has been talking smack for a year now about beating Derek at Wii bowling. So the game was on and the room filled with spectators as we watched Gary throw strike after strike defeating Derek again this year. It's quite entertianing when a blind man outbowls a 20-something.
Once everyone had left, in spite of being exhausted, I headed to the hospital to sit with Dad for a while. He was exhausted from his many visitors. His left lung remain inflated. We talked about the tests that would follow Friday (today). I tidied his room, tucked him in, and watched a few crime scene shows with him before leaving.
This morning my sisters and I (as well as my darling niece Abbie, Lori's daughter) joined Dad as he went for his test. He was in good spirits. I commented that we were the Macy's Day after Thanksgiving Day parade as we marched to the endoscopy section. Mom's brother Eddie joined us.
Dr. Homsi told us the scope appears to be successful in that he retrieve 16 tissue samples. He isn't certain if he was in the precise spot because the area is where the 2 lobes of the left lung come together and there is the membrane that holds them together. But he went every direction he could and took samples along the way. Dad's lung remained inflated and he tolerated the procedure well. Once he was in recovery, the others scampered back to their other activities (work, caring for Mom, etc.) and I stayed with Dad until he was moved back to his room. I was smart enough to remember to ask for the warmed blankets before leaving endoscopy because they don't keep those on the floors. And it's cold today -- frost on the windows cold. So he was toasty and woozy. It will be about 4 hours before he can safely eat or drink. He thought he was awake enough to read the paper but he quickly realized he should just sleep. So I tucked in and left for home.
Gaby, my dearest son's dear fiance, is eager to put up the Christmas tree today. She always does the one at her family's home in Peru but she's not gotten to do that for 2 years now. And I'd be glad to have her do our tree. She seems to think this will be a bonding experience for us but I'm so pooped I think supervising is more in line with my energy today.
All in all, the last 36 hours have been pretty good. I met a future cousin-in-law and her daughter, my uncle Bob's new bride, and a cousin's new baby. Joseph our Taiwanese friend drove in from OKC for the party and our neighbors joined us for a bit. Gary's friend Ina from the center where he lives joined us again this year as well. Izzie (our youngest Westie) loved snuggling in Miss Ina's lap. And I think Ina enjoyed Izzie.
I'd better get that tree and trimmings ready for Gaby to start soon. I'd like a nap before returning to parent duty tonight but that's ok if I don't get it. I'll sleep like a baby tonight!
Thursday, November 25, 2010
Thanksgiving Day, 2010
I’m not sure where my emotions last evening came from. I was experiencing anger at the universe for taking away over 8 months of my last 11 years… more days that are in 8 months… that’s how many days I’ve had a parent in the hospital. I am filled with despair at the situation where has no pleasant outcomes as options. I am anger at myself for engaging in self-pity when neither of my parents asked for the roles to which fate has assigned them. I am embarrassed that I get so mad at either of them—but mostly Mom—and play the ‘what if” games thinking that if we’d done something different along the way we wouldn’t all be so miserable now. And I’m tired. And I hurt. And I really don’t care to go on with this life. Existence on earth really feels a bit useless.
Today is Dad’s 71st birthday. I hope he feels better about his life than I do about mine right now. I recall his birthdays when we were younger, making golden butter cakes with chocolate frosting and singing to him. He even had a headful of hair back then. I miss my Daddy already and he isn’t even gone. His partner misses him to. And I miss the woman she used to be before a stroke 11 years ago robbed us of the real Linda Kern Hall. I am jealous that other people take their parents for granted and they have good health and haven’t exhausted their resources just to stay alive.
Yesterday there a number of small meltdowns, baseless accusations from mentally impaired parents, and then plenty of hurt feelings. So hurt, in fact, that Kris’s kids don’t even want to be near their grandmother. So hurt, that one chose to go spend the weekend with the sperm-donor dad from whom there is practically no support as opposed to stay at his own home this Thanksgiving weekend.
I feel like I’m in a Thelma and Louise movie. Nothing is going right and the border is the only escape. But you know they really do go across the border.
Today my dad’s family will begin arriving at my house at 3:30. My husband has been the best… mopping and cleaning while I either tend to my parents or try to complete my 2 classes I am taking. Both are doctoral classes and have significant demands of brain power and energy for research the next 2 weeks. So Steve, you’re a hero. Yet the house still needs to be tidied up, laundry done, food prepared. It’s 8:42 am and I haven’t the energy to walk to the bathroom let alone drag out the sage or soften butter. But I will. I’m giving myself the next 17 minutes to compartmentalize my life and get into the “normal” and “pleasant” and “collected” moods to which others are accustomed to seeing me. It will with a shower, a coke with crushed ice, and then the bell rings mentally and we’re out of the gate to get this Thanksgiving day rolling along.
Wednesday, November 24, 2010
Bummer
I arrived at the hospital at 6:30 and well ahead of my family. Mimicking my husband and his French butler line “rooooom service” line that he’s used with the kids and me over the years, I slid open the door and said “valeeeeeeeet service.” And like that our day was off and going.
My 2 sisters and parents were all checked in at 7 but waited nearly 2 hours before the procedure began. During the holding time, I learned where the warm blankey machine was located and got enough to sufficiently mummify both parents. Those toasty blankets are the best!
We'd been told the procedure would last about an hour. Unfortunately, Dad's lung collapsed almost instantly. The doc (with whom I am impressed) came to tell us the first challenge and then returned to attempt the biopsy. Within minutes he was back out and said the pneumothorax (as in size of the collapse) had increased during the short time he'd been talking to us and was now too large to risk continuing. He said he'd not seen such a significant “pneumo” before. I quipped "wow, a dad's a leader, but just the opposite direction." He chuckled. The doc said dad wasn't in any pain and was resting fine but that he didn't want to proceed with the biopsy. He had though that he could penetrate the fibrous membrane between the lobes and go at it from another angle but the size of the leak was so significant that it would be dangerous.
So for now, there will be no biopsy. Dad's being suctioned and responding well to the treatment. His lung is expanded and hopefully won't collapse again. He got his request and had the large chest inserted from the very start. Funny how you learn things from a crisis and an early lung collapse taught us to always insist on the large chest tube. The drainage was going well with the little red bubbles slowly working their way through the tube to the collection unit for measurement.
Dealing with Mom again is another story. Her remarks are often off-putting and frustrating. But as my dear husband reminded me, she can't see the situation enough to assess anything and her brain really doesn't work like it used to. Everyone's emotions are raw and we're tired so of course things get taken out of context.
As much as my writing this might lead one to believe we don't get along, nothing could be further from the truth. My sisters and I work so well together keeping each other in check. Steve was giving should massages in the waiting room (to our family only) and we enjoyed snuggling in warm blankets and drinking coffee.
Tonight Dad will stay in the hospital and likely he will stay tomorrow night as well. I'm excited to hear his hospitalist is the new guy from Peru. And I'm more excited to know that his pulmonologist who we've grown fond of is on call tomorrow should anything go awry.
In the meantime, I have work to do. Gaby and Derek will arrive from OKC tonight. Their Taiwanese friend is coming as well. So I must rush home to strip beds and get the dressing going. I use a recipe that belonged to Mama Hall and it's a crowd favorite. We expect around 40 at our house tomorrow evening. As exhausted as I am, it will be refreshing to have family around us again.
My 2 sisters and parents were all checked in at 7 but waited nearly 2 hours before the procedure began. During the holding time, I learned where the warm blankey machine was located and got enough to sufficiently mummify both parents. Those toasty blankets are the best!
We'd been told the procedure would last about an hour. Unfortunately, Dad's lung collapsed almost instantly. The doc (with whom I am impressed) came to tell us the first challenge and then returned to attempt the biopsy. Within minutes he was back out and said the pneumothorax (as in size of the collapse) had increased during the short time he'd been talking to us and was now too large to risk continuing. He said he'd not seen such a significant “pneumo” before. I quipped "wow, a dad's a leader, but just the opposite direction." He chuckled. The doc said dad wasn't in any pain and was resting fine but that he didn't want to proceed with the biopsy. He had though that he could penetrate the fibrous membrane between the lobes and go at it from another angle but the size of the leak was so significant that it would be dangerous.
So for now, there will be no biopsy. Dad's being suctioned and responding well to the treatment. His lung is expanded and hopefully won't collapse again. He got his request and had the large chest inserted from the very start. Funny how you learn things from a crisis and an early lung collapse taught us to always insist on the large chest tube. The drainage was going well with the little red bubbles slowly working their way through the tube to the collection unit for measurement.
Dealing with Mom again is another story. Her remarks are often off-putting and frustrating. But as my dear husband reminded me, she can't see the situation enough to assess anything and her brain really doesn't work like it used to. Everyone's emotions are raw and we're tired so of course things get taken out of context.
As much as my writing this might lead one to believe we don't get along, nothing could be further from the truth. My sisters and I work so well together keeping each other in check. Steve was giving should massages in the waiting room (to our family only) and we enjoyed snuggling in warm blankets and drinking coffee.
Tonight Dad will stay in the hospital and likely he will stay tomorrow night as well. I'm excited to hear his hospitalist is the new guy from Peru. And I'm more excited to know that his pulmonologist who we've grown fond of is on call tomorrow should anything go awry.
In the meantime, I have work to do. Gaby and Derek will arrive from OKC tonight. Their Taiwanese friend is coming as well. So I must rush home to strip beds and get the dressing going. I use a recipe that belonged to Mama Hall and it's a crowd favorite. We expect around 40 at our house tomorrow evening. As exhausted as I am, it will be refreshing to have family around us again.
Sunday, November 21, 2010
Birthdays
Tonight was a good night. We gathered at my Mom and Dad's (and sister's of course) to celebrate my hubby's godson and my nephew's 16th birthday. Happy Birthday, Tye! It was a sweet night. Dad talked intermittently about the procedure and things that he wanted to tell us. Lori hogged him for the first part of the night and I hogged him the second part. By hogging, I mean we doted. Gently rubbing his back -- something Mom hasn't been able to do for 11 years. He'd injured his thumb and the bandaid wouldn't stay on; so I wrapped tape around it to keep it in place. Lori brought him his meds. My phone rang and I handed it to Dad. It was my son Derek and the two talked a short while. I have no idea why but Dad told Derek the story about the largest water moccassin he'd ever seen.... running yoyo's at night and shooting the thing behind the head.... then placing it on the trail from the cabin to the water so the women would shriek when they saw it. He laughed some and seemed to be enjoying the story telling. It was a good night indeed.
Except for Lori. She's worried herself sick and has lost probably 10 pounds in the last weeks. It would be a blessing for me to be plagued in that way, but she's a tiny thing. Her blood pressure tonight was nearly stroke level but I didn't tell her that. I told her to watch the numbers and if it stayed around 140 on top or near 110 on bottom, to call her doc. I also reviewed with her the signs of stroke. Poor baby sister, I love you! Take care of yourself so I'm not as alone on this awful journey.
Kris is the one who bears the most weight. She's living with Mom and Dad so hears the nagging more than we do. Step and fetch'em is what we really call it. Dad's just not as quick to respond as Mom seems to think he should be. But she's (Mom) is trying to be more patient. She's frightened of losing him as her husband and as her caregiver.
As we were leaving, Mom was going to bed and dad was finally checking 6 weeks worth of emails. I have a hunch he's still on the computer. :-) Tomorrow I'll call about one of the life insurance policies and they'll check on an old annuity. Busy work sort of. But things to help settle his mind. We could all use settling of our minds right now.
Except for Lori. She's worried herself sick and has lost probably 10 pounds in the last weeks. It would be a blessing for me to be plagued in that way, but she's a tiny thing. Her blood pressure tonight was nearly stroke level but I didn't tell her that. I told her to watch the numbers and if it stayed around 140 on top or near 110 on bottom, to call her doc. I also reviewed with her the signs of stroke. Poor baby sister, I love you! Take care of yourself so I'm not as alone on this awful journey.
Kris is the one who bears the most weight. She's living with Mom and Dad so hears the nagging more than we do. Step and fetch'em is what we really call it. Dad's just not as quick to respond as Mom seems to think he should be. But she's (Mom) is trying to be more patient. She's frightened of losing him as her husband and as her caregiver.
As we were leaving, Mom was going to bed and dad was finally checking 6 weeks worth of emails. I have a hunch he's still on the computer. :-) Tomorrow I'll call about one of the life insurance policies and they'll check on an old annuity. Busy work sort of. But things to help settle his mind. We could all use settling of our minds right now.
It was a whirlwind of activity when I arrived at my parents. Mom's sister Rosetta was visiting and our CNA Mona was there as well. My sister Kris was preparing to bake. Shortly after I arrived, my other sister Lori and her hubby and daughter arrived. It took us a while but we finally got things lined out enough to work on preparing a list of what is located where (finances and policies). I'd tried doing this back in October when Dad first got sick but Mom's memory is impaired much of the time. Literally I was being led by a blind woman and that wasn't too successful! So between my parents and sisters, we were able to identify all the things needing identifying. Dad was a sweet little old man laying on the sofa with his O2 and blankets. Mom, more of a grumpy old bear, was getting accustomed to having the furniture rearranged in the den. Seems her lift chair had been crimping Dad's O2 hose and when that happens, things get crazy! For 2 years we tried to rearrange the room but they'd not have it. Now it's just the way we tried to put it in the beginning. But this is their idea so I think they'll be pleased. Lori's daughter Abbie and my sister Kris commenced to baking and I was off to school for a meeting about our trip to the Peru dig site.
The UA Razorbacks were on tv last night. I'd called to see how things were going. Mom was in bed early as usual and Dad laying on the sofa watching the game. He'd intended to move to the bedroom at halftime to watch the remainder of it in there. Mom had other plans and found her way back to the living room so she could hold his hand a while. I think today it dawned on her that he may not be here in a week.
Why a week? Wednesday, his little sickly lungs will be biopsied. He's been told he has a malignant lung cancer that the precise type of cancer is unknown. A PET scan won't help (though I offered to send my two adorable pooches to help) to determine the type of cancer. Though he can't have radiation and likely wouldn't tolerate chemo, the only other option would be surgery and they advise against that as well. But for his peace of mind, he wants to know what it is. It has grown from 1" to 1.5" in diameter in just 5 weeks so it is fast growing for now -- whatever it is. Lori asked Dad if he was certain he wanted this procedures which he'd originally declined. He responded if he dies during the procedure, he won't know it happened and he'll have been sedated so it won't be painful (paraphrased here). Logical again... but sad and scary too.
Today I hope to finish my research paper for Stats. Abbie will be delivered to my house later today to chop/dice celery, onions, etc. and make cornbread. But a quiet little goal of my own is to spend time writing a death notice that will do my Dad a little more justice than the typical obituary. After all, I know of no other man -- well one, Harry Neumeier who has now passed on -- who has devotedly cared for a very sick partner for 11 years. Growing up, we had the greatest vacations and silly birthday parties. My parents were terrific people and cared for everyone they met. I remember transporting crash victims we'd encounter on our way on the old Highway 71 ... taking them to hospitals and following up to see they were ok. My parents were nurturers of everyone around them. So in these last 11 years, when my mother was unable to do most everything for herself, it was dad that did the work for 2. This past April when another stroke robbed my mother of her eyesight, it was my dad who became her eyes. In 1961 at St. Boniface Catholic Church, when Father Peter asked them to pronounce their vows "For better, for worse, in sickness and health".... I'm sure they never knew what lay ahead.
For some reason, Garth Brooks song "The Dance' comes to mind when I think of their journey together.
Looking back on the memory of
The dance we shared beneath the stars above
For a moment all the world was right
How could I have known you'd ever say goodbye
And now I'm glad I didn't know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I'd of had to miss the dance
Holding you I held everything
For a moment wasn't I the king
But if I'd only known how the king would fall
Hey who's to say you know I might have changed it all
And now I'm glad I didn't know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I'd of had to miss the dance
Yes my life is better left to chance
I could have missed the pain but I'd of had to miss the dance.
The last dance they shared was at the wedding of Patricio and Jamie Kern Giovanni in August at that same church, St. Boniface. There in the dimly lit parish hall, my Dad wheeled Mom out onto the dance floor and gently moved her to and fro while we daughters and husbands and our own little families, beamed and squealed and rallied around them. The Dance.
The UA Razorbacks were on tv last night. I'd called to see how things were going. Mom was in bed early as usual and Dad laying on the sofa watching the game. He'd intended to move to the bedroom at halftime to watch the remainder of it in there. Mom had other plans and found her way back to the living room so she could hold his hand a while. I think today it dawned on her that he may not be here in a week.
Why a week? Wednesday, his little sickly lungs will be biopsied. He's been told he has a malignant lung cancer that the precise type of cancer is unknown. A PET scan won't help (though I offered to send my two adorable pooches to help) to determine the type of cancer. Though he can't have radiation and likely wouldn't tolerate chemo, the only other option would be surgery and they advise against that as well. But for his peace of mind, he wants to know what it is. It has grown from 1" to 1.5" in diameter in just 5 weeks so it is fast growing for now -- whatever it is. Lori asked Dad if he was certain he wanted this procedures which he'd originally declined. He responded if he dies during the procedure, he won't know it happened and he'll have been sedated so it won't be painful (paraphrased here). Logical again... but sad and scary too.
Today I hope to finish my research paper for Stats. Abbie will be delivered to my house later today to chop/dice celery, onions, etc. and make cornbread. But a quiet little goal of my own is to spend time writing a death notice that will do my Dad a little more justice than the typical obituary. After all, I know of no other man -- well one, Harry Neumeier who has now passed on -- who has devotedly cared for a very sick partner for 11 years. Growing up, we had the greatest vacations and silly birthday parties. My parents were terrific people and cared for everyone they met. I remember transporting crash victims we'd encounter on our way on the old Highway 71 ... taking them to hospitals and following up to see they were ok. My parents were nurturers of everyone around them. So in these last 11 years, when my mother was unable to do most everything for herself, it was dad that did the work for 2. This past April when another stroke robbed my mother of her eyesight, it was my dad who became her eyes. In 1961 at St. Boniface Catholic Church, when Father Peter asked them to pronounce their vows "For better, for worse, in sickness and health".... I'm sure they never knew what lay ahead.
For some reason, Garth Brooks song "The Dance' comes to mind when I think of their journey together.
Looking back on the memory of
The dance we shared beneath the stars above
For a moment all the world was right
How could I have known you'd ever say goodbye
And now I'm glad I didn't know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I'd of had to miss the dance
Holding you I held everything
For a moment wasn't I the king
But if I'd only known how the king would fall
Hey who's to say you know I might have changed it all
And now I'm glad I didn't know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I'd of had to miss the dance
Yes my life is better left to chance
I could have missed the pain but I'd of had to miss the dance.
The last dance they shared was at the wedding of Patricio and Jamie Kern Giovanni in August at that same church, St. Boniface. There in the dimly lit parish hall, my Dad wheeled Mom out onto the dance floor and gently moved her to and fro while we daughters and husbands and our own little families, beamed and squealed and rallied around them. The Dance.
Saturday, November 20, 2010
Busy living or busy dying
It's a choice I suppose. Yesterday my dad heard the words from the oncologist. Maliginant. Grew fast. Hard place to get too. Not a candidate for...
So when the hospitalist came in, Pop was fired up about getting the hell out of dodge. He wasn't wanting to stick around for another albuterol treatment. He wanted to go home. With a 30% chance of surviving a biopsy, he didn't want that either. But then his curiosity started to bug him and he wanted to know what kind of cancer and confirm it was indeed cancer and and and. So just like he was negoiating to purchase a car, he negotiated with the kind doc a release on Friday to return next week for the ever-so-risky biopsy.
My mother was there as was my sister. Mom is such a challenge. She was talking to Dad about putting up a flagpole this weekend because the weather would be nice. Then he could string Christmas lights up from the ground in a inverted cone just as he'd done when we were kids. So at night it was a glorious Christmas tree. We all snapped at her for being so silly to think he could do that. But she's legally blind. It's hard for her to comprehend what's going on when she can't see him or the machines or any of us. The patience of Job, that's what Santa needs to bring me for Christmas. My sister and Mom left after the oncologist left.
Then it was just Dad and me again. He'll go back the day before Thanksgiving and have to stay 48 hours. Thanksgiving is his birthday. And he loves the turkey and dressing and such. Heck, my dressing recipe is his mother's!
After the doc left, Dad and I talked about radiation (it will destroy the small good part of his 2 lungs when it's killing the cancer), the chemo (he's too immune compromised now to be a candidate), going back on the ventilator and other life support systems. It was hard. I told him he didn't have to fight it if he didn't want to anyhow. I introduced him to the term palliative care and how it's all about making a person comfortable (or as much so as possible) as they are dying. I kept the conversation as light as I could even throwing in a quip that he'd be a candidate for medical marijuana if we had that here. But the gloom didn't dissipate.
I stayed as long as I could then kissed him goodbye like always. A little peck on the side of his face with the words "Love you, Daddy." But this time my voice cracked. He smiled in his silly way with the corners of his mouth turned up and his cheeks puffed out. It was a long walk to my car. My good long cry is coming. But just not yet.
So when the hospitalist came in, Pop was fired up about getting the hell out of dodge. He wasn't wanting to stick around for another albuterol treatment. He wanted to go home. With a 30% chance of surviving a biopsy, he didn't want that either. But then his curiosity started to bug him and he wanted to know what kind of cancer and confirm it was indeed cancer and and and. So just like he was negoiating to purchase a car, he negotiated with the kind doc a release on Friday to return next week for the ever-so-risky biopsy.
My mother was there as was my sister. Mom is such a challenge. She was talking to Dad about putting up a flagpole this weekend because the weather would be nice. Then he could string Christmas lights up from the ground in a inverted cone just as he'd done when we were kids. So at night it was a glorious Christmas tree. We all snapped at her for being so silly to think he could do that. But she's legally blind. It's hard for her to comprehend what's going on when she can't see him or the machines or any of us. The patience of Job, that's what Santa needs to bring me for Christmas. My sister and Mom left after the oncologist left.
Then it was just Dad and me again. He'll go back the day before Thanksgiving and have to stay 48 hours. Thanksgiving is his birthday. And he loves the turkey and dressing and such. Heck, my dressing recipe is his mother's!
After the doc left, Dad and I talked about radiation (it will destroy the small good part of his 2 lungs when it's killing the cancer), the chemo (he's too immune compromised now to be a candidate), going back on the ventilator and other life support systems. It was hard. I told him he didn't have to fight it if he didn't want to anyhow. I introduced him to the term palliative care and how it's all about making a person comfortable (or as much so as possible) as they are dying. I kept the conversation as light as I could even throwing in a quip that he'd be a candidate for medical marijuana if we had that here. But the gloom didn't dissipate.
I stayed as long as I could then kissed him goodbye like always. A little peck on the side of his face with the words "Love you, Daddy." But this time my voice cracked. He smiled in his silly way with the corners of his mouth turned up and his cheeks puffed out. It was a long walk to my car. My good long cry is coming. But just not yet.
Tuesday, November 16, 2010
Eights days a week
At least that's how long its been since I posted. Mom and Dad were getting settled in their routines again when Dad developed a new pneumonia and collapsed again just 3 days ago. Whew, never gonna catch a break! We learned when he was being processed for ICU that he does indeed have cancer. The pulmonologist confirmed it last night. Dad doesn't want mom to know so as not to worry her. So my sisters and I are the secret keepers again. I decided this morning that as soon as I'm done with my statistics class ("sadicistics") that I will concentrate on planning funeral things. You know, writing the death notice that is more inclusive in details than the standard obituary. I'll get info on flowers and music and the like. We'd done some of this already but I think it would be good to have things planned in detail for both parents so we rest in the comfort of family members rather than the busy details when the time comes. I know busy work gets people through but people also make mistakes and have regrets when they are rushed in the process. So I want to do this now.
I have also decided that as soon as sadistics is done and I have Christmas break, I want to get my parents to both tell their life stories as best as they can. I'll then either type and have it bound in a book or make a recording of it. I did this with my Grandmother Hall but now the recording isn't as crisp and the media that is used to play recordings changes too swiftly. So a written edition seems wiser to me.
I have much to do this morning. Over the course of the last 45 days, many bills were overlooked. The same can be said for work and school assignments. It's been crazy trying to catch up. Toss into the mix my daughter's bf returning from Afghanistan and the chaos of their planning their next step... and well, life just gets too busy! Sloppy joes.... sloppy joes....
I have also decided that as soon as sadistics is done and I have Christmas break, I want to get my parents to both tell their life stories as best as they can. I'll then either type and have it bound in a book or make a recording of it. I did this with my Grandmother Hall but now the recording isn't as crisp and the media that is used to play recordings changes too swiftly. So a written edition seems wiser to me.
I have much to do this morning. Over the course of the last 45 days, many bills were overlooked. The same can be said for work and school assignments. It's been crazy trying to catch up. Toss into the mix my daughter's bf returning from Afghanistan and the chaos of their planning their next step... and well, life just gets too busy! Sloppy joes.... sloppy joes....
Monday, November 8, 2010
Zero to 100 in how many seconds?
How does a person go from clinically dead (for all intents and purposes) to full of vigor in just 30 days? Nearly 3 weeks on life support and now back to full speed? Dad's only problem is the confusion he still has from time to time. The ICU psychosis appears to have lifted but from time to time he visits "looloo" land again. He's usually good to me and sweet like always. That is unless Mom is grumpy.
My mother really doesn't like me. I don't mind that so much anymore. She isn't the mom I knew for the first 45 years or so. I don't mind being the "nazi" or "mean one". I am the reality check person - the one who says "no, dad can't push you up the ramp" or "no a blind person like you can't drive a power chair."
On a brighter note, the other part of this sandwich deal is going rather well. I spent a long weekend with my son's fiance while he was at Air National Guard drilling. The 2 of us had a great time for 4 days... as you may know I'm in grad school so studied the 2 days while she worked. But in the evening and Saturday we had a fun time going to new places to eat and shopping. We had dinner one night with their couple friend. The young lady, a Brazilian, has landed a job in Sao Paolo and they will be moving there soon. So sad to see such sweet young couples such as that move so far away. On the flip side, it's someplace to visit.
My daughter's new boyfriends -- the one who might be THE ONE -- arrived from Afghanistan. He's just completed his second tour (first was in Iraq) and has decided its time to quit playing and start thinking about his long term plans.
Our young adult children are wonderful, smart, and highly ambitious kids. They've not ended up in jail or on drugs. They are self reliant and compassionate. The happiness (pure laughing crazy happiness) they add to our lives is no different as young adults than those cute little toddlers they once were. I just wish their grandparents were better able to enjoy these days of transition into career-minded adults who will be marrying soon.
My mother really doesn't like me. I don't mind that so much anymore. She isn't the mom I knew for the first 45 years or so. I don't mind being the "nazi" or "mean one". I am the reality check person - the one who says "no, dad can't push you up the ramp" or "no a blind person like you can't drive a power chair."
On a brighter note, the other part of this sandwich deal is going rather well. I spent a long weekend with my son's fiance while he was at Air National Guard drilling. The 2 of us had a great time for 4 days... as you may know I'm in grad school so studied the 2 days while she worked. But in the evening and Saturday we had a fun time going to new places to eat and shopping. We had dinner one night with their couple friend. The young lady, a Brazilian, has landed a job in Sao Paolo and they will be moving there soon. So sad to see such sweet young couples such as that move so far away. On the flip side, it's someplace to visit.
My daughter's new boyfriends -- the one who might be THE ONE -- arrived from Afghanistan. He's just completed his second tour (first was in Iraq) and has decided its time to quit playing and start thinking about his long term plans.
Our young adult children are wonderful, smart, and highly ambitious kids. They've not ended up in jail or on drugs. They are self reliant and compassionate. The happiness (pure laughing crazy happiness) they add to our lives is no different as young adults than those cute little toddlers they once were. I just wish their grandparents were better able to enjoy these days of transition into career-minded adults who will be marrying soon.
Wednesday, November 3, 2010
And the Doctor Smiled
I took Pop for his first visit with the pulmonologist. We arrived early and were in pretty good moods. Dad was wearing his oxygen and his pulse ox was bouncing around 97. When the doc arrived, he grinned ear to ear and said he was completely surprised to see dad... given his condition upon arrival in ER. He listened to his lungs and said he couldn't believe how well he was doing and again, was happy that he was doing so very well. The doc asked if my dad recalled how he arrived at the hospital, his condition, or much of his hospital stay. There was no memory of it. The visit wasn't without it's dire warnings -- a CAT scan next week will determine the extent of the damage and perhaps cancer in his left lung. But for today, we're celebrating his life.
The nurse conducted a exertion test to see how he handled getting his heart rate up to 120 and the impact that would have on his O2 levels. As I keyed a note to my sisters, the auto correct on my iPhone said he was having an "insertion test." We had a great laugh about that.
So for today, my dad's restrictions for driving are lifted. He's required to use O2 24/7 and can push my mother's wheelchair only on flat surfaces. No meds changes. CAT scan in a week. He's a new man -- and openly thankful to be alive.
Once we were settled in the car, I asked Dad if he realized how close we'd come to losing him. Today, for the first day, he was completely lucid. He told me no. I told him the story again. And then I warmly rubbed and squeezed his left knee and said I was so glad that we was doing so well.
The nurse conducted a exertion test to see how he handled getting his heart rate up to 120 and the impact that would have on his O2 levels. As I keyed a note to my sisters, the auto correct on my iPhone said he was having an "insertion test." We had a great laugh about that.
So for today, my dad's restrictions for driving are lifted. He's required to use O2 24/7 and can push my mother's wheelchair only on flat surfaces. No meds changes. CAT scan in a week. He's a new man -- and openly thankful to be alive.
Once we were settled in the car, I asked Dad if he realized how close we'd come to losing him. Today, for the first day, he was completely lucid. He told me no. I told him the story again. And then I warmly rubbed and squeezed his left knee and said I was so glad that we was doing so well.
Monday, November 1, 2010
Twas Providence Hovering
I suppose that is what it was. Dad, the man who isn't to be driving, drove to the Waffle House for coffee with his drinking buddies, to the funeral home to inquire about an old policy, and the pharmacy to pick up a script. No shrubbery was damaged and he was chipper from the adventure. His "ICU psychosis" may finally be lifting and not a day too soon. My sisters and are are exhausted from parenting our parents. If we as teens were half as difficult as they've been, it's a wonder we were beaten within an inch of our lives!
I was thinking about the Kubler-Ross grief cycle. We're a new normal now. As little sis pointed out, we have episodes with one or the other parent about every 6 months. So I guess we've started recovering a little more quickly. The 11 hours of sleep I got yesterday didn't hurt any either!
Today I've noticed a "Thankful for Thirty" campaign on Facebook. My first attitude of gratitude mention goes like this: Today I am thankful that Dad had independence enough to venture out on his own and the clarity enough to make it home safely. That's a little miracle.
I was thinking about the Kubler-Ross grief cycle. We're a new normal now. As little sis pointed out, we have episodes with one or the other parent about every 6 months. So I guess we've started recovering a little more quickly. The 11 hours of sleep I got yesterday didn't hurt any either!
Today I've noticed a "Thankful for Thirty" campaign on Facebook. My first attitude of gratitude mention goes like this: Today I am thankful that Dad had independence enough to venture out on his own and the clarity enough to make it home safely. That's a little miracle.
Friday, October 29, 2010
Outpatient procedures and warm blankets
This morning as I swapped parent sitting with my sister, Dad was all gussied up with a hair net on, IV's hooked up, and warm blankets piled on top of him. He was in a good mood and eager to get a sausage biscuit from Hardee's. This procedure wasn't complicated, really, just stretching the esophagus --- something he'd had done several times before. Lately he'd gotten to where he couldn't swallow the smallest of pills and everything he was able to eat would come back up just minutes later. So it's time again to get his esophagus stretched so that the lumps of food can make it past the hiatal hernia and into his tummy. The procedure was uneventful. I saw in the waiting room trying to read a statistics book and wheeling his O2 container with me as I moved about.
When I was called back, the doctor was kind and told me that dad should have a liquid today and a soft diet "from now on." Hmmm, a soft diet from now on? Good luck getting Pop to comply but the "from now on" part hung in the air. Was it an euphemism for "until he expires"? I didn't ask. He went on to show me pictures of yeast infection spots in his throat. The beasts were likely a consequence of exposure to a long-term ventilator and feeding tube. Just a few pills ought to clear it up. I remembered thinking if Dad is in his good mind it will be funny to tease him about how he got a yeast infection in his throat. But those good mind fun days aren't very predictable. The nurse did volunteer that dad could have sausage gravy run through a blender and then strained to remove lumps if he absolutely had to have it. So this was my mission for the Hardee's drive through.
When we arrived, I began to order when this little frail man next to me in a hoarse voice shouted "sausage biscuit and ...." There was no stopping him. He got the 2 biscuits ordered and I took him home. Mom was there with her sitter as one would expect. Going about their daily hygiene routine. The physical reminders now of their predicament and how perilessly close to the edge they perch is almost too much for me to handle. The O2 condensor's rhythmic noise. The 2 walkers. The O2 cord snaking from one room to the next. The rosary beads. The potty chair.
Would someone just tell me about the good ole days. And would someone just freeze time for a minute so I can breathe. Sleep would be good too. And maybe some perspective.
It's hard to be kind and helpful when you are beat to a pulp. It's hard to be tender when the personality residing in the brain isn't the one that I like or know very well. I'm so sorry that life goes this route and that independence is lost. This death sentence so to speak isn't one bestowed upon the dying. Rather it's a sentence for all those caring for the dying as well. The relief valve is one that we look to for release yet we don't really want it to do that either. Maybe just a flare at the top to burn off the excess energy so that we can all settle back down... yes, a pole with a flare to burn off the ugly so that it could be pleasant again. That's my wish for today.
When I was called back, the doctor was kind and told me that dad should have a liquid today and a soft diet "from now on." Hmmm, a soft diet from now on? Good luck getting Pop to comply but the "from now on" part hung in the air. Was it an euphemism for "until he expires"? I didn't ask. He went on to show me pictures of yeast infection spots in his throat. The beasts were likely a consequence of exposure to a long-term ventilator and feeding tube. Just a few pills ought to clear it up. I remembered thinking if Dad is in his good mind it will be funny to tease him about how he got a yeast infection in his throat. But those good mind fun days aren't very predictable. The nurse did volunteer that dad could have sausage gravy run through a blender and then strained to remove lumps if he absolutely had to have it. So this was my mission for the Hardee's drive through.
When we arrived, I began to order when this little frail man next to me in a hoarse voice shouted "sausage biscuit and ...." There was no stopping him. He got the 2 biscuits ordered and I took him home. Mom was there with her sitter as one would expect. Going about their daily hygiene routine. The physical reminders now of their predicament and how perilessly close to the edge they perch is almost too much for me to handle. The O2 condensor's rhythmic noise. The 2 walkers. The O2 cord snaking from one room to the next. The rosary beads. The potty chair.
Would someone just tell me about the good ole days. And would someone just freeze time for a minute so I can breathe. Sleep would be good too. And maybe some perspective.
It's hard to be kind and helpful when you are beat to a pulp. It's hard to be tender when the personality residing in the brain isn't the one that I like or know very well. I'm so sorry that life goes this route and that independence is lost. This death sentence so to speak isn't one bestowed upon the dying. Rather it's a sentence for all those caring for the dying as well. The relief valve is one that we look to for release yet we don't really want it to do that either. Maybe just a flare at the top to burn off the excess energy so that we can all settle back down... yes, a pole with a flare to burn off the ugly so that it could be pleasant again. That's my wish for today.
Wednesday, October 27, 2010
Hiding
I feel ashamed. I am hiding at home tonight rather than going to see my parents. I am exhausted from 26 days of gainful employment wedged in between caring for parents and running them to one place or another. I am behind in my own work. My house is a wreck and bills have gone unpaid. Did I mention I'm taking 2 classes myself? The hardest of the two hasn't seen my eyes since October 1. What I had learned up to that point I can no longer remember. I'm exhausted. I feel guilty -- after all, the fourth commandment is Honor They Mother and Thy Father. And the 7 corporal works of mercy command me to care for the sick, visit the shut-ins, feed the hungry. But I didn't see the part that said it's ok to stop and breathe once in a while. But I know that I have to.
Milestones today? None really. My sister relented and gave Dad his keys. Though the doctor said he couldn't drive, the incessant demands from both parents for the keys to be returned finally wore my sister down. She lives with them and couldn't stand the inquisition any longer. My mother has manipulated a doctor into seeing her on Friday. None of us can take her to an eye doctor this week as I already took her to her cardiologist and we're splitting time tomorrow taking Dad to get his esophagus stretched. The sitter we hired seems to be of little use though she came highly recommended. I suspect it's because they tell her not to do things and the like. But she was hired to help Mom with her daily hygiene and to take meds. She's also supposed to vacuum on Tuesdays, tidy the kitchen each day, and change the bedsheets on Thursday. Though she's there from 9 - 2 there is no midday meal being provided. I'm confused about why they think this is acceptable. But I'm too tired to argue over it.
A strange thing happened at work today. A lady asked if she could pray for me. I told her of course she could. There in front of about 70 people she laid her hands on me and prayed aloud. It wasn't uncomfortable. Every few seconds I'd feel warm like the eternal force was reaching me but then the chill of exhaustion would push the warm aside.
I spoke at a conference today. I saw an old friend of my parents. I thanked her for visiting my Dad in the hospital and taking him Holy Communion. She was touched that he thought enough of her visit to mention it to me. I'm glad it made her feel good. Those kind of people -- the ones who help those of us who suffer feel a little better about out plight -- those kind of people are special. And rare.
Today I called about getting Mom's chair retrofitted to be assistant driven. We'd tried that before but I guess the company from whom the chair was purchased didn't quite understand what we were trying to do. For the life of me, I don't know why they didn't. But several hundred dollars later, the modification that first company made doesn't work. We could have used that money to fire up the grill for burgers as far as the expense is concerned. Perhaps this other company will have the right answer.
Today I am angry. And sad. But mostly very tired.
Milestones today? None really. My sister relented and gave Dad his keys. Though the doctor said he couldn't drive, the incessant demands from both parents for the keys to be returned finally wore my sister down. She lives with them and couldn't stand the inquisition any longer. My mother has manipulated a doctor into seeing her on Friday. None of us can take her to an eye doctor this week as I already took her to her cardiologist and we're splitting time tomorrow taking Dad to get his esophagus stretched. The sitter we hired seems to be of little use though she came highly recommended. I suspect it's because they tell her not to do things and the like. But she was hired to help Mom with her daily hygiene and to take meds. She's also supposed to vacuum on Tuesdays, tidy the kitchen each day, and change the bedsheets on Thursday. Though she's there from 9 - 2 there is no midday meal being provided. I'm confused about why they think this is acceptable. But I'm too tired to argue over it.
A strange thing happened at work today. A lady asked if she could pray for me. I told her of course she could. There in front of about 70 people she laid her hands on me and prayed aloud. It wasn't uncomfortable. Every few seconds I'd feel warm like the eternal force was reaching me but then the chill of exhaustion would push the warm aside.
I spoke at a conference today. I saw an old friend of my parents. I thanked her for visiting my Dad in the hospital and taking him Holy Communion. She was touched that he thought enough of her visit to mention it to me. I'm glad it made her feel good. Those kind of people -- the ones who help those of us who suffer feel a little better about out plight -- those kind of people are special. And rare.
Today I called about getting Mom's chair retrofitted to be assistant driven. We'd tried that before but I guess the company from whom the chair was purchased didn't quite understand what we were trying to do. For the life of me, I don't know why they didn't. But several hundred dollars later, the modification that first company made doesn't work. We could have used that money to fire up the grill for burgers as far as the expense is concerned. Perhaps this other company will have the right answer.
Today I am angry. And sad. But mostly very tired.
Tuesday, October 26, 2010
Monday, Monday
How does a child reconcile with a parent when the parent is elderly and the child is now in the driver's seat? Literally? My dad lost his car keys on Friday. He'd been pleasant enough about it until I arrived to tote him to a coffee shop and mom to her visit for a pro-time test. For some reason, I was the evil one. Hell hath no fury as that of a many whose keys have been taken away! My dad snapped at me about the way I fastened my mother's wheelchair into place and then said "can I not take care of my wife." It was clear then the issue was loss of control. He decided to stay home and sulk. Try as I might, I had not choice but to leave him and get my mom to her appointment.
That was another story. She claims to have a cracked brain which causes her forgetfulness. Her legal blindness confuses me because is worse some days than others. But why oh why is that a selective forgetfulness? How many times do I have to tell her she has power of attorney? How many times do I have to ask her not to pick her nose in public and not hear the answer of a little kid whose eyes are closed: "I can't see them." She got mad at me for the way I treated my dad arguing that he could drive well. I wondered how in the sam helen she knew that when she couldn't see that he'd parked in the bushes just a day or two ago. There was no arguing but I was tired and I was mad. So I told her if she thought she could do it without me then wheel herself into the exam room. She struggled and banged walls and doorways. I let her do it all the way back down to the lower level when we left. Finally she was exhausted. I told her if she wanted me to help, she just had to ask. So she asked.
I hate what my life is becoming.. I hate the thoughts that death would be a blessing to them since they are miserable. I hate the thoughts about what will it be like when they are gone -- will we still think it was exhausting caring for them for these last few years? Mostly I am get angry at people who pretend to have suffering when in fact they are bilking the system. Disability income is for the disabled not the lazy. And I see plenty of the lazy. And they enjoy a good life. Why do I have to worry about my parents and see their little fortune burned up chasing one medical demon after another.
God, I sure hope you really are up there. I hope that you are truly kind and not an egomaniac. I hope that you are thinking that poor family needs a break. I hope that you decide tomorrow to give my mom back her sight. I hope that when death does come, it arrives while sleeping. Please don't make it be a gut-wrenching experience like we had on October 1. Death isn't easy but death can be harder than it has to be. So please, God, send a miracle our way so that death when it comes is a gentle transition into the after life.
That was another story. She claims to have a cracked brain which causes her forgetfulness. Her legal blindness confuses me because is worse some days than others. But why oh why is that a selective forgetfulness? How many times do I have to tell her she has power of attorney? How many times do I have to ask her not to pick her nose in public and not hear the answer of a little kid whose eyes are closed: "I can't see them." She got mad at me for the way I treated my dad arguing that he could drive well. I wondered how in the sam helen she knew that when she couldn't see that he'd parked in the bushes just a day or two ago. There was no arguing but I was tired and I was mad. So I told her if she thought she could do it without me then wheel herself into the exam room. She struggled and banged walls and doorways. I let her do it all the way back down to the lower level when we left. Finally she was exhausted. I told her if she wanted me to help, she just had to ask. So she asked.
I hate what my life is becoming.. I hate the thoughts that death would be a blessing to them since they are miserable. I hate the thoughts about what will it be like when they are gone -- will we still think it was exhausting caring for them for these last few years? Mostly I am get angry at people who pretend to have suffering when in fact they are bilking the system. Disability income is for the disabled not the lazy. And I see plenty of the lazy. And they enjoy a good life. Why do I have to worry about my parents and see their little fortune burned up chasing one medical demon after another.
God, I sure hope you really are up there. I hope that you are truly kind and not an egomaniac. I hope that you are thinking that poor family needs a break. I hope that you decide tomorrow to give my mom back her sight. I hope that when death does come, it arrives while sleeping. Please don't make it be a gut-wrenching experience like we had on October 1. Death isn't easy but death can be harder than it has to be. So please, God, send a miracle our way so that death when it comes is a gentle transition into the after life.
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