I think I'm gonna start at the beginning ----- some of you may have already read our story but for myself and therapy for me I'm going to "blog " out our story. so this could be boring.
Dan and i were married when i was very young - i was 17. i never did graduate from high school- but did get my GED. my writting will probably reflect that. Dan basically worked on the family dairy farm. It was hard work and I did not really get to see him or have spousal help from him the first 12 years of marriage. We had 3 children during that first 12 years. April, Robert and Erika. I worked a off the farm job all the years we have been married ( right up untill recently) April 2012. April was a little mother hen. Robert was a little wild man ( good thing he had a mother hen). Erika was a pretty shy girl but walked really early. Bethany came along after we had moved off the dairy farm and to Jamestown and worked conventional jobs.
My life was not easy those early years of marriage. Dans family never really liked me. we were raised different. I was easily offended by a lot of things - so I was easily "baited". In hindsite I own a good part of the problems.
I was never really accepted by Dans family. No matter how hard I tried. I worked and cooked and took good care of the kids. I was looking for much more than his family could give. except the word "could "give would give an indication that these people cared. That was the key they never had the ability or the desire to "care." Dan, myself and our children just never mattered. Well enough self pity on that .
Luckily I had a fantastic family. My mom and Dad loved all of their grandchildren. They would babysit at a drop of a dime. Thats the kind of mother and grandmother I had intended to be - but the "stroke" has stripped me of the ability to be that type of grandparent. I just lack the time, the drive and the energy. But not the love! I love those babies and I hope to regain the strength I need to be an effective human being again.
I have a really wonderful sister as well who is very much a surrogate grandmother when she is needed. She relishes her role as a grandmother. and the really unique thing about her is it doesent matter if it's "her grandchild or not" she just loves the kids.She got that from our mother.
My brother from CA never had kids of his own but has been a tremendous support to me. His wife is fantastic. He struck out on his first marriage but has moe than made up for it with this wife. My family (siblings) have all in one sort or form been there for me. Not physically. because of the distance. But in spirit and with financial support as well, should I ever need it.
Dan and I worked hard on that farm for 12 years. I learned how to milk cows, haul sileage (chopped corn for animal food), haul manure out ( you know what that is.) we calved out cows - we even had triplett calves one year. We did so much more than what I have described.
We even had a goat called Buddy - he was the coolest thing ever. He thought he was a dog. I guess down south it is common for a person to have a porch goat. But here in North Dakota it is sorta strange. What a sleepy little life we had going on. The kids and I would feed calves. we even had sheep for a short while. Lambing was the most fun. a lamb would be born half frozen here in north dakota. Bring the lamb in put them in a tub of warm water and it was amazing to watch them come to life. My son Robert as I described was a wild man. one time a neighbor called asked if I had Robert , the neighbor lived over a mile away. I said yes I just seen him 5 min ago. looked out the wind and he was gone. Diane our neighbor said well, I got a blond headed boy over hear with a goat. I swear only 5 min had elapsed since I seen him last. That kid could move.
angels must have watched over him. I think angels watched over our whole family. April the oldest was actually involved in a tractor accident. We allowed what we never shold have. The kids would ride on the tractor with Dan It was cold out and April had slipped her hands inside her sleeves. Dan hit the brakes and she flew over the wheel of the tractor and the tractor drove right over the top of that 5 yr old girl. Her leg was broken. She spent some time in the childrens hospital but survived what most kids don't. Farming can be dangerous. And young dumb parents can be dangerous.
At some point in time I became frusterated with our life. Farming at that time was no good, I felt unappreciated, coldnt find a decent paying job. We barley made enough money to get by. We were poorer then - then we are now. But god did always take care of us.
I decided at some point I was "done". Done with dans family and their bullshit. Done being unappreciated. So I told my husband I was moving, he welcome to come with but I was leaving. Leaving the poverty, his family, the neverending work. So I went and Dan came with.
We started our new life, it was a rocky start they always are. Dan had a good job from the get go. Mine was much less good. I got one of those arrogant , insecure new college graduate as a boss. Wow that guy could make a mountain out of a particle of dirt.
Then I started at the "Jail" it took me awhile, but I found a job I was really good at. I never have had a problem calling a spade a spade or recognising a spade. For the most part jails are not filled with bad people, but they seemed to be filled with sheep. It has been my experience that each of the people I encounter would not do what they had done except for the audience/ and or "peer pressure". Very few are truley evil and do unprovoked crimes.
About a year and a half of living in our new home I became pregnant with Bethany. Dan and I had been having some marital issues and God sent our answer. Another child. I love babies but pregnancy to me meant morning sickness and Beth was no exception. 9 months of daily throwing up. Even the day of her delivery.But she was a healthy baby which is all that mattered. I named her Bethany hoping for the calm a serene name it is. No she was not calm and serene as a child, but as a teenager she is a true jewel. Bethany was named for the town where mary went to visit her cousin when she ( mary) found out she was pregnant with Jesus.
We sang a lot to Bethany- who in turn is now a gifted singer. But since all our tragedies she just hasent had her heart into it. She did sing at her grandmothers funeral and it was beautiful. I hope one day she will decide to sing again ( with her heart in it).
Well we moved on through our ife here. Kids played outside - rare these days. But we opted out of having a fancy tv package so that helped. We had a grand total of one channel until they took analog tv off the air.
But it made our kids all the better for it. Robert excelled at Basketball and Cross Country. Erika was a state winning all around gymnast. Thay explains her walking so young and catapolting her way out of her crib daily.
Bethany a gifted singer and excellent student.
April the oldest never really got to have those types of accomplishments because she was my main helper. But she excells at being a wonderfull human being. Oh don't get me wrong if she had had the oppurtunities the other kids had she would have done well but well life gets in the way. She is now a wonderful mother and future wife.
So moved on with our lives. slow but sure. April lived in tennesee for a while where she learned a lot about differnt cultures and lives. She has since returned met a very good guy and had a child- baby Weston-. Robert graduated from college spent some time in Germany training for a company returned to the states lives in the "ciites". Has a nice home and a wife and a child. Our Lilly-bean as we call her.
Erika is in college for nursing and will hopefully be done in about 1 year. Bethany is our catch all. Helps her big sister with baby Weston. Helps with Dan when she is needed. But her health is being affested from all the stress. She has ulcers at age 15. So I'm trying not to use her to often.
Well last year march 12 ,2011 Dan was at work. He tripped on a rug. Big deal right?? We all do it every day trip ,stumble or fall.
He got this terrible headache. But he thought it was because he was hungry. So he had April bring him something to eat. His headache just wouldn' t go away. He went to church, he has been a usher at church for the last 20 some years. His vision got messed up. He basically went blind in one eye. He went to the cofessionary and called me. God- stay put don't drive! I'll send April to go get you. April went and picked him up. I was driving in from the country ( we live 10 miles out). I called my girlfriend who is a nurse. Explained what little I knew. She said find out if he bumped his head. Retinal detachment maybe? So I arrived at the hospital. Dan was clearly in pain. His headache was so bad he was in tears. I asked him if he had hit his head? No, he replied. He could barley think. We talked about the possibility of a anyurisim - dan a had a nephew who had one. We contacted his sister. They had been to a genetic specialist. and his anyurisim was not a genetic in type. But then Dan remembered he had tripped at work and that is when the headache began. We reported this to the ER doc. Dans vision had returned basically when he arrived at the hospital. but the headache and his blood pressure was not getting better despite the pain meds and the blood pressure lowering meds. so the doc here in town decided he should go to the trauma center in fargo. So in the middle of the night we drove to fargo on icey roads. an ambulance was not available so we opted to drive him. We got to fargo sat in the waiting room. got put in a exam room next to a elderly handicapped woman who just kept yelling- which did not help with the headache. But we did get a really good nurse, she documented everything really well. Then enter GOD also known as the ER doc. who decided to do a lumbar puncture. and then a CT scan. read his own scan seen nothing... But it would have been much better had he taken the CT scan to be read by the radiologist. But no the ER doc was much to smart. He sent us home with a migrain diagnosis. Thank God we said and drove home. I called our home town hosp. told them it was a migrain. Oh good they were worried about dan and had asked us to call them witha update. So we went home and went to bed. Oh we were so tired. It was 6 in the morning. at about 1130 am dan woke up to go to the bathroom - I was in that sorta awake land. I heard him thumping around. said dan, dan are you alright? no answer. . I knew , had that feeling. jumped out of bed. Dan had wedged himself on the wall. His speech was garbeled. and he could not stand except for the fact he was wedged up to the wall. I had dan hold onto me and we crawled out way down to the floor. I ran and called 911. My intial thought is actually he had been overdosed with all those medications. But then it became apparent it was only one side he had weakness. I thought stroke- but prayed not.
The ambulance came it was kinda a keystone cops type of thing. My house has narrow hallways so i notified 911 of that and said to bring in the longboard not a stretcher. They brought in the longboard but tried to put him on it upside down. I corrected the board for them. Then they realize we got to carry him otta here so they had to call for assistance. Duh! of course your gonna be carrying someone out on a longboard. That is the purpose of it. Finally they got him loaded and they did actually call for a air ambulance to fly him to the stroke center.
I try to call my daughters who had accompanied us the night before. No answer. So I went to Aprils house and told them about their Dad. Then I hit the road to Fargo. The girls were coming as soon as they could get themselves together. I arrive at the stroke center ( the same ER we were in the night before) the nuerologist met me. She told me dan had a stroke for sure and it was a bad one. they had called in a interventional radiologist to try to clear the clot mechanically. I asked about the drug TPA no, he wasent eligable. I found out later it was because of that lumar puncture the ER doc did the night before. Thanks doc... The clot could not be cleared. The radilogist who was doing the surgical procedure even allowed in a priest to do last rites. This priest had been a family friend for 25 years and in his 50 years of priesthood he had only one other time been allowed in during a surgery. They were that sure Dan would pass. The interventional radiologist came out said he couldnt clear the clot and we should prepare ourselves for his passing.
They sent Dan up to ICU he was hooked up to everything.... His family arrived from everywhere. They came for a funeral I guess cause I havent seen or heard from most of them since. I spent the night with dan in his ICU room. Crying and praying. The next day no changes. he squeezed our daughters hand but the nurses said it was most likley a reflex.
So we prayed and cried, no changes and things did not look good. The only positive thing Dan had going on at that point was the fact he could breath above the ventilator. But the docs wanted a directive. That next morning the kids came to me and wanted to talk. We all made the decsion to put it back into gods hands. dan was always a "closet" spiritual person. Few people knew he would get up early and just pray for about a half an hour a day. He went to church faithfully and he did his absolute best to be the best he could be. Oh he had his faults - we all do. But he tried and for the most part I think that is what life is about. Trying to do your best. He had faith in jesus and that jesus died for him.
So I gave the order to the docs in the morning to take dan off the ventilator. Which sounds like "pulling the plug" and it sorta was. Dan could breath a little on his own but he was comatose from both the stroke and the drugs. We went to dan and told him what we were doing. That we loved him and we were returning him to god. WE cried and we were not sure how things would turn out. We left his room after that. We went down to the cafeteria and our daughter discovered she had forgotten her purse in dans room so she ran back up to get it. We got a frantic text from her. Get upstairs now... dad is awake and smiling. We all left immediatley and stormed into his room. He was able to communicate with us by thumbs up or thumbs down. The most important thing we learned were dans wishes. He wanted to fight. This made all the rest of the decsions to be made much easier. Then a very realistic nurse brought us back to earth. She wanted me to clearly understand dan was not going to be rehab-able and to expect him to go to a nursing home. I told "NO" he will go home , he is 51 years old he will not be living in a nursing home. She was an excellent nurse and given dans bleak outlook she was not out of line. Dan did progess a little at a time but his oxygen was plummeting . So he had to go back on the respirator and was scheduled for a trach to be put in along with peg tube to allow for tube feeding. He did pick up a respitory infection and ended up with chronic aspiration pnuemonia.
He progressed to the point he could lift his unaffected leg and arm and pull himself over so he could be changed. The same nurse who said dan would live in a nursing home admitted she was wrong and said he would eventually make it to rehab. He was transfered to Triumph hospital. It was a longterm acute care hospital. Kinda of a roosting spot for him to rest till he could endure rehab. He got his first bath in a long time at that hospital . How scarey that must have been. They had a big mirror in the bathtub and that was the first time he had seen himself since the accident.I watched him look so long and hard at himself and I just wanted to cry. I stayed with him and assured him he would be ok - they deep bath as a helpless person was so frightning. But he trusted me. And admitted he felt much better. He was in that hospital for 2 months. It was a very busy place. But for the most part he recieved very good care there. I returned to work, since I was a shift worker I was able to manipulate some hours together and have a little more time with Dan. I rented a longterm motel room so I didnt have to lug luggage everywhere.
Dan hated his trach- they had a end piece on it he could not stand and would take it off all the time. I had no idea the frequency that he did this untill I met an exceptional nightshift nurse. Dan also "wouldnt believe he couldnt walk." and fell out of his bed one night. They had lowboy beds so it was not a far fall. the hospital called me immediatley when it happened. I knew dan had retained more intellegence than he was credited for because he never tried to get out of the bed again. But it was sad to watch him at one of his physical therapy work outs. He was still convinced he could walk. The disapointment on his face was heartbreaking. shortley after that the speech lady got him talking . But he had global aphasia. he was confused about information (language) both receptive and expressive. And his arm ( rt arm ) had no movement. But his rt leg had some. I spent many hours passivley working out that leg. He eventually got to the point he could balance on the side of the bed. Then transfer to a chair. 2 person assist. then one person assist. then I could tranfer him myself ! We went around the floor for wheelchair rides. The first wheel chair ride exhausted him. Just sitting up exhausted him. He slept at least 80 percent of the time. And he would get headaches about once a week. the headache would incapacitate him. For the most part little stimulation was given to him except for his therapies. Oh I did those little things but - sleep was what he needed.
He and I had our favorite nurses, there was a young nurse named michael there he was very energenic and upbeat. never upset about a thing. He and I shared a love for books so we would discuss books we had read. Our first grandchild was born while Dan was at that hospital. He was so proud of baby lillybean. I don't think he totally understood what was going on but at the same time he did. We bought chocolate cigars to give out around the hospital. It was sorta a therapy for Dan to hand those out and to understand the concept of what he was doing. It was also intresting cause he didn't want to give them up. after awhile he understood but early on he did not.
When i returned to work while dan was at triumph I got a call from them. This was the first time the insurance company tried "dirty tricks". The insurance company had contacted triumph and told them they had planned to have dan moved to a nursing home. Here I was 100 miles away scared to death they were just gonna move him. Now my legal gaurdianship came in handy. I made it clear I would sue if my husband was moved. Shortley after Dans stroke upon seeing the severity of it i contacted our Atty and asked his advise. He drew up papers for me to be granted temporary gaurdianship, which later became permanent. I had just done a night shift drug my but out of bed and drove all the way to Fargo. I planted myself in Dans room. Spent the night there and the next morning caught every Doc who came through the door and pleaded with them to write a supportive narrative that it would not be in Dans best intrest. It worked the insurance company backed off. But I learned about dirty tricks.
Eventually Dan was able to go to the actual rehab unit. There they removed his trach and his peg tube after a short time. He started rehab OT, PT and speech 5 days week. He worked so hard. Watching him start to eat food was fun. Boy everything was "disgusting" it had been months since he had eaten. I learned how to bathe dan at the rehab center. Not so much anything they showed me but I wanted him to have a bath more frequently. I did form a relationship with a mother of a 35 yr old stroke victim. Sadly and yet common we never exchangd names. And with those wonderful HIPPA laws I'll never know their name. Her sons prognosis was much better than Dans. There was also another person about the same age as Dan. He appeared to be similarily affected. His wife came infrequentley and we did visit with them one afternoon. His destination was a nursing home. I felt bad for him. Dan and I were never real social while at rehab. We always did prefer to just be by ourselves. He had a few visitors. By now I had figured out we wouldnt see much of Dans family. Although I did continue to extend myself to his family.
Dan was making improvements. My mom and my daughter made a kinda last minuet decsion to come and visit. Mom had been staying at my place taking care of business. I had a then 14 year old girl at home and dogs. So mom took care of the animals and Beth.
She had been teaching Beth to drive, what a great grandmother. We had a paticularily tough North Dakota winter but co-workers would come out and dig her out when needed. Thanks Frank and Andy.... But mom did the full service out at my home. She cooked and cleaned and loved her grand-daughters. She would drive in and see my then pregnant daughter - April. They were decorating her new home and preparing for her baby. Mom shared with me how April and her went to K mart and bought every "whinny the Pooh" product they could find. Mom thought it was so great. It was the first time my mother had ever been on a baby shopping trip where money as not the issue. April has been fortunate in that the person she is with can provide for her and their child. He has been a genuine good person to both April and to her family. He has been there for all of us. And his family have also been there for our family- they are wonderful people.
But on a very fateful day my mom and my daughter decided to come to Fargo to see Dan. Mom was gonna run home and gather her things for the trip. Apparently she turned in front of a pickup. The pickup seen it coming and tried hard to avoid- he even rolled his truck. Moms vehicle was not badly damaged and the accident for her should have been trivial. But she was 76 so nothing is to trivial at that age. She was fully cognizant after the accident and felt so bad. called april on her cell phone and said she was in an accident and she wrecked the car and she was so sorry. April drove out to the farm looking for grandma. Grandma actually looked pretty good. But at the hospital she had an xray and it showed her neck was broken. she could walk and talk but her neck was broke. so they airlifted her to guess where - Fargo- same place Dan was about a month or two before. At first she was gonna be in Jamestown so I had driven almost back to Jamestown 100 miles when I got the news she was headed to Fargo. So I turned around and drove back to Fargo. I talked to my girlfriend wendy and had called the jamestown hospital when i heard of the accident. sent wendy to be with my mom. Wendy being a nurse herself made her way back to mom and sat with her. they formed a bond during that time. I had also told the hospital Wendy was to make medical decsions for mom till I got there. I was moms medical proxy. Any how I got back to Fargo and Mom got there. I and my brother were with her. She apologised again about the car. I laughed and told her it was her car as I had planned to give it to her for mothers day - mothers day was on sunday and the accident was on the friday before. She said really. Yep so - mom you wrecked your own car, but the good news it had full coverage so you can choose your own car when this is over. We had a good laugh. Mom did'nt feel real well her blood sugar was kinda low. So i was asking about treatment for her and the young buck doc ( not the same one who screwed up so bad with dan ) said, - do you think we are gonna feed her? I told him he was fired from my moms case. I was not taking ANY crap from anyone. The supervising physician came in and asked me questions who, what , where , when and why. In the end I let the young buck back on moms case with the understanding all films will be read 3 times by 3 different people. And no smart aleck. He was good about it and apologised. Mom got moved to that same ICU Dan was in. She stayed in ICU till mothers day ( sunday) . We had a great mothers day. we spoiled her. people came to visit. she was never alone except that night she told us all to go get some good sleep. So we all did back at my still rented longterm motel... Untill the phone rang. Mom had coded but was fine. we all dressed and raced back to the hospital. Mom was fine by then but a little scared. I stayed with mom that sunday night/ monday morning. i slept on 2 chairs pushed together at an angle i could see her and she could see me. we chatted through the night. In the morning she got the ok to eat. Oh she said everything tasted so good. The rest of the family came and visited. I had a long phone conference with workers comp in reference to dan that early afternoon. When I returned my family was leaving. April, the pregnant daughter gave grandma a hug and a kiss. those two always had a special bond. Back when we still lived near Grandma< and grandma would come for a visit April would stow -away in her car. Grandma and I almost always let her think she "got away " with it. So she would get that night stay at Grandmas. Anyhow April gave Grandma what would be the last hug and kiss and I Love YOU. and Grandma actually felt aprils pregnant stomach and said oh- the little tyke. My mom was a very affectionate person but it was out of charecter for her to tough anyones tummy ( except tickeling babies). I took a shower and mom visited with a new visitor a grandson ( my brothers son came to see grandama). I and the grandson left moms room as the nurses came in to take mom to the bathroom and i wanted mom to have privacy. I returned a short time later as the nurses where getting mom back to bed. They had a hard time. Mom was a lot of dead weight. and she kept saying she was so tired. I watched the nurses fumble around check blood sugars and blood pressures and I knew something was wrong. I told the nurses this isent right. call that code, no she is just tired they replied. but the blood pressure continued to plumett. I ran into the hallway and SCREAMED for a doctor to help my mom. But mom had already slipped. They revived her for a brief moment and rushed her back to ICU. and tried to damage control with me. GOOD LUCK i was angry. I stood in that hall and screamed. and screamed... you killed my mom- at this point i was convinced they had dropped mom in the bathroom. I wouldnt leave the area because my sister from colorado was flying in and would be coming on that elevator any second and i did not want her walking in on that sound- the sound of CPR. My sister did arrive and immediatley joined me in shock. The the same doctor from my husbands stroke came and asked me the same question. What do you want. I told them to only do what was plausible for a 76 year old women to survive with a quality of life. He did 2 more rounds of CPR and pronounced her dead. Oh that terrible, terrible decsion not once but twice I had to make. It was a stroke that took my moms life-- her body just had to much damage from the accident and a clot broke loose and we all know that is a stroke.... The utter devastation of calling my other sister and my children to tell them mom- Grandma was gone.
The next few days blurred by. I needed clothes for a funeral. I literally went into Macys and told them to dress me. They did. Thank god- I looked pretty good. I wanted to honor my mother and she loved it when us girls looked nice.
I had to make special arrangements to "break Dan out of ReHab" insurance would not allow him a overnight stay out of facility. so I had to pick him up at 0600 and return him by midnight the day of the funeral. It was a 300 mile round trip. I gave the Euology for my moms funeral. Many of the words said where a combined effort of us siblings and approved by all the family. My daughter Bethany sang-- not conventional funeral songs but songs she knew well, that grandma enjoyed hearing her sing. One was a song about breast cancer - my mom was a 4 yr survivor. The other about letters to heaven / address in the stars. We as a family made the choice to make moms life a celebaration. In my euology I actually say I would not trade her death for more time. It is true today. Her death was not painful she just slipped peacefully away. I miss my best friend, her laugh, her smell , her love.
I was fortunate because I had mom for almost a month shortley before her death. I had my own illness(s) i had been dealing with, so the entire month of January she stayed with me. In the previous october I had a old birthing injury repaired-- got anemic after that so it took a long time to heal. The on January 1st after being told repeatedly it was the flu--- I had a twisted bowel. I had to go to Bismarck to have surgery. And of course did not heal very fast from that either. was just so weak. I am 5 foot 7 . I weighed about 110 lbs . I should weigh about 135 to 140.
Mom came and stayed with me thank god... it felt so good having her love. It was the last time. But I got that last time with her and for that I am gratefull.
Then Dans stroke hit us just like it's lighting symbol. I had barley gotten enough strength back to return to work and here came the stroke. I had fabulous co- workers who donated time to carry me through and I returned to work about 2 weeks after Dans stroke. But there was always something requiring me to take time off.
The I started to research the actual medical records of Dans stroke. I noticed the ER trauma doc never did take the ct scan to be viewd by a radiologist. he signed off on viewing them not the radiologist. In fact he said "with all the bad things ruled out - it seems (dan) had a migraine" and released dan. The next day the same ct scan is viewed and they could see the stroke coming. infact using the ct scan from the night before the nuerologist had basically diagnosed dans stroke mechanisim while he was still being airlifted. And when the interventional radiologist used his camera her diagnosis was "dead on"...
Well work through the funeral and I get a call from my sister - They were showing moms apt. 1 day after her funeral. Not asking to show it- physiaclly entering her home and showing it...... Oh MY GOD. nothing had been put away or moved or cleaned. I checked our paticular century codes and ILLEGAL. Had to come down and put a stop to that crap... idiots, idiots, idiots... Mom lived in a low income housing area and they just had to go in there. I dealt with that problem paid moms rent and told them to stay the hell out.
Then new problem Bethany who had gallbaldder issues for the past year finally had an attack bad enough insurance would pay for the hida scan. her gallbladder functioned at ZERO. She was yellow. So she had surgery 8 days after grandmas funeral. Thank god all went OK. But I knew the surgeon was good in bismarck and he was a specialist and at least that went ok.
As you can see my life was at breakneck speed............ I'm gonna start a new post nancys blog- life continues i'll call it