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Crazy Lady seeks advice

Ok - input appreciated- especially those who have followed me for years - literally !. Its taken a long time for me to settle down and into my "stroke widow" role. I was pretty young when it happened to Dan and I had ambitions of my own- all flushed when Dan stroked. So after the 4 years of caring for Dan ended with me in the mental institution and him in a nursing home - I am debating bringing him home. Why - Im doing virtually all his cares and still paying the bill for his care. Im finding, I may, in a few years down the line end up in financial issues if I continue to payout for his care, and even though I have a great boss I do not earn but barley a 1/3 of my previous - before stroke salary. With all the constant care and paying attention needed I could never commit to a job like I had previous . The job I have now accommodates , don't pay well, but is very accommodating. And I feel the actual want to care for him again in his our home. I feel most of the "RUN" has been taken out of me. Im not running as much , given up the alter life I tried to have.  Of course this will involve some planning and work , by no means is this gonna happen anytime soon. The home I have now is not handicap accessible , can not do long term care in it. So I would have to look at homes AGAIN --again history is repeating itself. So Im playing with the idea. Have not and will not tell Dan anything as I have not made a solid decision. I kinda feel like I don't want Dans story my story or OUR story to end in the nursing home YET. I recognise I may be repeating a pattern, but the pattern of everyday Nancy to the home to work to the home --- then to my house to sleep and repeat and paying a institution to do what I do isn't working either.... So for fun people digest this..... Yesterday the home had changed Dans bedding - YAH !!! so I notice the blanket on the  one side the visible is hanging really low , so I figured I would pull his bed out and even out the blanket. I pull out the bed and his blanket on that side has like 2 feet on the floor.... Im like WTF ?? so they took the rectangular blanket put it on the bed wrong ( side ways) and figured the extra would just go away... I laughed so hard.. Went and talked to his nurse supervisor and was like - I don't know who special ed is that made that bed , but man if you can't do the most basic simple and easy job in the whole place - I pity the residents.  I wasn't adversarial and not even angry - just the  daily shenanigans of the home is so frustrating. They are having so much trouble as are all the homes hiring that a "warm body" is pretty much the only qualification. I just don't know that the home is the best for Dan at this point. Im sure he'll end up in a home again, but I guess Im willing to try again... but the decision is not made and a lot would need to happen if thats the decision. Im not in a hurry --- and yes to my long time stroke net friends please chime in tell me what you think. You know my history, you know ME and you know the STROKE ISSUES we all deal with daily.---- Nancy

nancyl

nancyl

 

family and funerals

Dan has had 2 uncles die in the past 1.5 months. Although he was close with them back in the day and up till the stroke would go home and hunt with them , they had not put any effort into coming to see him or reach out in any way. So when Jimmy died - I figured I wouldn't tell him, why- things good and bad like that create depression for Dan and by default depression in me as well . But one of Dans sisters decided to stop and see Dan at the home on her way home from Jimmys funeral and told Dan about it- so that blew up in my face. It had been 4 years since she had made any effort to see Dan but had to stop in and create some chaos. I don't think it was malicious - just thoughtless. although Dans family did make a "hub -bub" about no one from Dans family being in attendance.  So when "Terry" died I told Dan, and he wanted to go to the funeral ( he was closer to Terry ) , so we did. So we got hugs and a thanks for coming. But his family chose a inaccesible place to sit together and no room for Dan. So we sat in a area by ourselves. Some aunts came and sat with us and other various family as well. But Dans immediate family just stayed at their table and never came and talked to Dan . I could not have gotten him and his chair over to their table if I had tried. So we ate and we left.  It was a very uncomfortable experience. I guess I expect to much. And in reality, if situation was reversed would I be any better ? I don't know.    On another front - I have a friend who came home for a funeral from Oklahoma  , Her and I were close back in my old work days. She has had 2 kids and her husband is a genuine POS who just can't keep a job, can't be trusted to help with the kids, doesn't pay her opinions any mind, lets his family treat her like garbage - etc. etc.... the is is a smart hardworking girl. But through the past two or three years has only reached out to me during the bad times in her world. I have helped her financially, I have offered to pay to bring her "home" . But she stays in that bad situation. So she came home was at my house rehashing her life and I finally just said- Your married to a POS and the only person who can change your situation is you. She took it ok at the time. But musta ruminated on it through the night, cause she was gonna call me in the morning but never did, and I found out she left town. I feel bad, but - Im not a good person to whine to, especially cause I got my own issues . And I have helped as much as I can. But I also know she has no one in her corner, so I wish I woulda just kept my mouth shut and stayed in her corner. And I am still inner corner. as I texted her and said when and if she needs I will still make good on my offer to help her move "home".  Life.... 

nancyl

nancyl

 

scanning

Dan likes to be busy-- I found the perfect pastime, he is scanning things at my work. It is entertainment for him. He feels useful and it is needed. Problem ? What!?? Dan cause a problem? LOL  He wants to come everyday to my work.... Not practical. But I am doing my best to keep it regulated, in reference to my work. And he gets to leave the home 28 days out of 30, so he is not just wasting away in a nursing home- we will go to grandkid events or to my daughters house or cabin and visit. Dan is doing fairly well right now, we still go through the no eat no drink days. But not so much right now, I keep  the mantra - "if God wanted you, he'd have you."  He lost 2 uncles in the last month and is kinda sad, although we hadn't seen hide or hair from them since Dan stroked, so there is that resentful feeling , that you wish you could rise above.  Its hot here in ND, But we stay indoors for the most part.  The nursing home scratched Dans glasses so Im dealing with getting Dan a new pair, but even something so simple , with Dan and his OCD is difficult. Im thankful to have the nursing home, but at the price tag it carries and the amount of work I do in taking care of Dan am bothered by it. But my caregiving has to have some boundaries - or Dan will run me ragged and NUTS again. But gosh I feel guilty.                                                                  My sister takes Dan to a movie on fridays , giving me that "day off" to work, and sometimes go out with my friend Wendy. Or just go home and vegetate - or like others net flix.  Cant seem to get the ambition to go and do some good housecleaning- I got to go through stuff and PURGE.  Over all my depression is better than last year at this time, so I guess thats progress, Im making a real effort to resign that this is my life, DEAL with it. I've put on a lot of weight  - admittedly mostly alcohol calories.. LOL -- that is what it is..LOL

nancyl

nancyl

 

finally Dan takes some tylenol

Dan fights all pills has refused all for about the last 2 years. This includes pain pills and the like. But when his brace got put on wrong it stimulated some really bad pain for him. It took 2 weeks of his groaning and I finally said- if he didn't take some tylenol I wasn't coming anymore. Blackmail basically. But darn it helped his pain. So for now he is taking the tylenol. Everything in our lives has to be dramatic. Simple tylenols become big issues. Strokes - can, in Dans case take away common sense. ON the other hand, he still thinks to look when ever he approaches the car for any leaks. Last night he seen one. Ill get it checked soon, so there is that. It always boggles me what he knows, cares about and what he doesn't . And it changes, about the time a caregiver adjusts to his demand , it changes. 

nancyl

nancyl

 

Dan is having more trouble

Since the AFO got put on wrong by the nursing home Dan can hardly walk. We make it a few steps and his affected leg just buckles. We have told the nursing home we want him PT assessed and maybe take a look at his AFO... Dan weighs about 70 LBS less than when the brace was fitted so maybe he just needs a new one. Pity cause the old one is a very good one. I was told they don't make them like that anymore. always something... right... lol

nancyl

nancyl

 

Pay 8700 month for staff to be ignorant

So Dan is private pay at a nursing home. I do about 80% of daily cares. The ONE time in the past 3 months I ask for nursing home to get him up and ready so he can be brought over to daughters they injure him. They put his AFO brace on wrong. It couldn't be seen how wrong because his sock covered it. He was telling me how bad his leg hurt, but ( pain in leg) thats common so I made him walk and the darn thing was pinching him the whole time. He finally wouldn't move so we sat him down and my daughter was like maybe something got inside the brace . unfolded his sock and seen the brace and his "pinch" mark. Now once the sock was not covering the brace one can clearly see it was on wrong. Im just having such a hard time fathoming anyone with any intelligence at all not seeing it was wrong. And if you can't figure it out ASK . Clearly the person who got him ready had not any experience with Dan. He wasn't wearing briefs, which I discovered upon the return to the nursing home, and his urinal was in the bathroom _ DIRTY-........ Now Im feeling guilty - like now he is actually getting hurt at the place that is paid a lot of money to care for him.....UURRGGHH frustrations . Yes I WILL BE TALKING TO THE ADMIN OF THE HOME.

nancyl

nancyl

 

Continuing with ECT

Still doing ECT, It has helped me a great deal. I travel 100 miles 2x a week for this treatment. So it is time consuming and money consuming. But I sure do feel better. Not cured, but improved. We had Dan overnight at Aprils for 2 nights over thanksgiving. He so enjoyed himself. If he could have just been like this at home. woulda, shoulda, coulda..... not meant to be. He is well taken care of between the the nursing home staff and myself. He is a few of the staffs "favorite". He is also a few of the staffs least favorite. No surprise there...lol... Bethany ( our youngest) got married the end of october. Her husband treats her like gold. for that I am so thankful. Dan did have a fall in mid october at the nursing home. He recovered OK ,thankfully. Dan and Weston have become the best of buddies. I am thankful for that. they throw lots of "ball". So life goes on. Slowly but surly.

nancyl

nancyl

 

ECT--electroconvulsive therapy

My depression although improved is still a predominant part of my life...Meds have not resolved it. ... So I elected to start ECT - had my first treatment on this past monday. I survived -- they put you under for this and give a muscle relaxant. I will do it 3 times a week for about 4 weeks. It leaves you very sore, as far as the muscles go... even had sore toe muscles ..LOL-------- Im still working , still seeing dan as often as I can ( now with the treatment). still surviving . I am OK- I feel this treatment is the right thing for me.... statistically it is safer than meds and more effective, but it is drastic. I can do drastic.

nancyl

nancyl

 

Just a quick catch up

Life hasent changed much since my last blog. The depression lingers, I hate it. Dan is still in the nursing home and seems to have adjusted. BUT he manipulates himself out a lot ( who can blame him though) . He goes out more days than he stays in.. It has been a relatively decent summer for us. My daughter in Baker MT lost her home to a tornando then 2 weeks later both their pick up and car got hailed out. But they have insurance no one was hurt ( they were not home). Had another grandbaby Levi. Took me 6 weeks to get the nerve to take Dan and drive out to MN to meet the little guy. My youngest is struggeling with her own depression - some of it is normal growing up issues ( she's 20) some of it is all the family trauma. My oldest got promoted at her job at the hospital , she is the department head of sterile processing. Proud of her. My Weston ( grandson) - is growing like a weed. I love picking him up from daycare/ now school. he runs and hugs me so hard.. and he loves his grandpa. Weston although 5 pays attention to grandpas nonverbal clues and will say - grandpa has to go to the bathroom.... and he loves to check on grandpa. They Dan and Weston play a lot of "ball" --- that kid can catch a ball and throw..So Dan has a few lessons he can still pass on.... I still work , I still see Dan everyday twice a day , I still drink... But that's life...... Nancyl

nancyl

nancyl

 

my turn

So I am sick, I am with a UTI -- a bad one, probably more of a kidney infection actually... Its in my back..... After 4 kids I don't feel pain upon urination - or back pain as that is kinda a constant. I went to the doc with aches and pains that i thought was cold related or most likely depression related... wow for a change I actually had a physical ailment... I knew I had kinda a short temper and was easily overwhelmed ..... but both those are normal depression traits as well so i put no stock in any of it... So because I have a big weekend. I am home in bed --- drinking fluids just being a good girl.... Dan has had a horrendous week , making it harder to "listen" to my body. I think he is straightened out... for this moment in time....Strokes, all I can do is shake my head and think about the perfect mirror of health we have..... he had the stroke but, this morning i woke up and though i bet he has a Muti - from his refusal to eat and drink.... so he probably dehydrated those poor kidneys and gave himself a Muti..... mine I don't know , stress, not drinking enough , mum anything that makes no sense is probably the reason.....lol -- the story of our lives....... Nancy

nancyl

nancyl

 

another anniversary

another anniversary.... # 5 ..... Dan is still Dan,.... He is a character.. The nursing home is his new manipulation place. They are still surprised by his things he pulls..... He has his favorite staff. and his non favorites.... there is a non favorite, who has learned Dan is to be feared. Dan got out of his bed into his chair and went after the aid..... apparently this aid had been banned from his room prior by his employer son not much sympathy was given to the employee.... I stayed out of all of it..... but I think the person might have been terminated.... My life is stays quo -- depressed manic the whole funnigans of doing to much. I still am seeing the guy, but with all the stress of Dan I doubt it will last. Hey it is what it is.....Life..

nancyl

nancyl

 

manipulations

Dan even the nursing home - is still a bugger. I take him out usually to Aprils house , I have not ,and today confirms it , taken him or even talked about the remodel being done on the house. Now for certain I won't let him poison that house to -I need a sanctuary. Not a jail. I picked him up at noon we got something to eat came over to aprils- and he fell asleep - yes he rested so comfortable while I did not. Then he wokeup and decided NOW he was gonna watch a movie. he slept through one... but of course the poor me look came out making me feel the queen bitch. And the nursing home ticked me off. I bought Dan 4 see of sheets and 4 mattress pads. They do not provide mattress pads and the sheets are not nice at all. I marked them ( i know some will ask that question) - but Dan has had this blood infection. I took hime to fargo and they got a pic line in and removed the port... anyhow it is hot here in the dakotas and humid.. so a urinal is a breeding ground. I had taken Dan out yesterday - to aprils cabin and then to church then out to eat and back to the nursing home. I get there the urinal has urine in it.. It didn't magically clean or empty itself while were gone... Arghhh so I take the urinal , rinse it out , sanitize the neck of it . and come back dan had peed the bed. GOD i was so ticked .. so I put the light on- no one - i want to leave but can't cause i don't want leave him laying in urine- it is obvious they don't care about that... so I change his sheets and mattress pad, - I threw the soiled stuff into the hall. along come a girl and asks is this stuff dirty ? well duh, so i told I emptied Dans urinal, changed his sheets, and mattress pad and for all that i get the luxury of paying 10 grand a month. and the kids are not helping no one wants to go see dan. everyone is busy, leaving as always it all up to me... we are all he has. Yes he is a jerk, but why not do it for me if not for him. All I want is some one to visit him a hour or two a week so i don't have to .. I am at the point of advertising - 50 bucks to go visit dan maybe that would motivate some one... Is this it? Is this all I get for the rest of my life. Never ever getting a break, I had kids young ( not anyones fault i know) but I bit my tongue and raised them mostly alone - cause dan was married to any job he ever did. Got the kids to the point they were out of the house , in college or close to be grown. Have a year of many illness's my self an here comes the stroke. Now I am just stuck with this life which i have come hate. And I hate that I hate it.... why can't I just be the kind of person who can just devote their life to the end years of my husband.... I can't i am 48 years old - Dan can live to be 80 - I just can't look at 3 decades of misery. Some days I just want to walk away from all of it, the kids, the grand kids, and this shamble of life i have... Yes i am crying , upset, angry, ashamed of crying, being upset and angry.. I will and am OK - I guess I am at the angry part of all this crap that happened ... the problem won't end - so i either adapt or just go crazy... crazy didn't work out so well. and mental health wise I feel better than I have in a long time... and since my depression starts with mania- then I worry am i manic, for having a good day or a bad day? Always second guessing myself - but it is a 50/50 crap shoot... life in the really bumpy, pot holed , broken cement kinda way.. What fun gem I am... lol... I hate the mirror... Nancy

nancyl

nancyl

 

nancys blog life goes on

testing --- me and technology??? any how this is part 2 of all the fun stuff I was writting about nancy and dans year     So now my mom is gone, my husband is still in the hospital, my kid is recovering from surgery--- what else???? Well nothing for a little bit any how. this brings us to the middle of May. I'm working full time , driving to and from fargo on a regular basis trying desperatly to keep it together. Come the end of May, Dan goes to the nursing home here in Jamestown. What to expect?? Well actually great care. It was actually where one of my daughters worked during the summer as a CNA-- she is a nursing student. That may or may not have contributed to the good care he got there. The rehab was actually better then the REHAB center he just came from. Everyone worked hard with Dan. But Dan did grow bored there. He did want to go home, but I also wanted as much inpatient rehab my ins. company would provide. In late July BC/BS insurance tried dirty tricks again... the called me on a friday afternoon and said they would no longer pay for his care. They advised me to go take him home or I would incur the cost of his care... FRIDAY afternoon.. Really, i contacted the nursing home. they were at a loss. the insurance company had been nickle and dimeing his care and would never approve a big block of care so no real longterm plans could be made. The nursing home said call your congressman and representatives-- I did --- then I was told call the govorners office PAYDIRT... between all the different pressures put on them they gave in. But the real PAYDIRT was telling th gov. office about Dans workers comp case that kept getting denied. I at their request sent over all the medical records and workers comp was ordered by the gov to revisit our case. But dirty tricks --- they sent it to a paid gun who said what they wanted him to say. denied again... then I started cause I finally had time to really review his case and the legal denials workers comp had done . I discoved 23 errors for real 23... 2 of which were out and out fraud and several mis -statements we will give them the benefit of the doubt. I became a political embarassment. so after a knock down dirty battle I won. this was in November 8 months of fighting!!! Back to July Dan is still in nursing home. April goes into labor.... Had a difficult delivery she almost bled to death... her cervix had torn 3 ways ( the same type of birthing injury i had but mine was never repaired properly- thats why i had surgery in oct of 2010 and got so sick after surgery).. The baby was healthy. But april was not well for weeks afterwards all she could do was sit/lie on couch.... needed total assistance to shower and go to bathroom. so i would go shower dan at nursing home ( he only got a shower once a week) so we devised a system dan and I. we laid a bed covering on the floor around the toilet. and using a pitcher of water we basically showered him as he sat on toilet. most water went down his back into the toilet. The water that did not got absorbed by the bedding cover. then I wipped p the floor and put the bedding used in the dirty linen container. I did this everyday but shower day. So I would go and shower my husband and then go to Aprils shower her and then go to work. Funny I had way more energy then... I also would bring the baby up to see dan. the nursing home had a kind cafe centered in it. so we would walk down to the cafe and have the special for most breakfasts. then he would be off to therapies. At night we would somtimes order in pizza for fun in his room and I would stick around till he took his pills. then go home to bed. While Dan was in the nursing home it was painfully obvious that my home was not gonna work for dans cares. So I pieced together remodeling from friends and family... I was so lucky I had a few people to help. I paid them just the same . but aound here in ND at any cost a person is lucky just to get a contractor. 80,000.00 later here I am. In July Erika looking for some fun and break from reality. Went water ski-ing with friends managed to pickup a parasite or something. she was sick for a couple weeks. more drama and fear. but all ended ok. Late july dan had a pulmonary embolisim. the nurse found him on the floor with vomit all around him. Sent him to Fargo. At this point I don't want to go to Fargo to many bad memories but that is where all his records are... We go to fargo the find the embolisim and a kidney stone. Coumadin for the clot , surgery for the stone.... But the floor he was on was full of coughing and vomiting. And yes I told the docs to wash their hands. I explained as best I could to the nurses my history and my reservations. But no one knew how to communicate there. I constantly found a nurse or a aid trying converse with him. and his answer to everything -NO-. so a food service person would take away his food. No one knew when surgery would happen. He hadn't eaten in 2 days and for Dan that was always an issue. I finally flipped out and took him down to the cafeteria to eat. And yep you guessed it they finally come for surgery. The surgeon comes up and yells at me. I yell at him and for effect throw my phone at him. At this point I had asked for a patient advocate who just joined in with the doc in an effort to impress..... I melted and the advocate actually told me he did not care about my history ( yes it was another friday afternoon and he had no time- he was mabey 25 yrs old) I finally left the hopital after my daughters came to be with dad... The Dan went on a hunger strike and pretended to be comatose... he actually fooled some nurses. So I came back after a good days sleep. Got my crap together and talked with a very good hospital supervisor... she was a true pro. Dan "miraculously" got better when I came back. got his surgery and I took him home . well back to the nursing home anyhow..... He returned to his therapies at the nursing home. Dan came home in mid september. He had his first seizure sept 26... And it was a big one... his oxy was at 48 percent after he had oxy for about 3 mins from the sheriffs dept. The ambulance arrived and checked his vitals 48 percent... he seized so hard he broke muscle. Yes it is possible. and the toxins from that are painfull. so he was hospitalized for 2 days and given painkillers. Which started a cycle of constipation. Which started a depression.They came out and did inhome therapies. Dan improved some,but what he lost was in terms of stroke time was huge he regressed at least 4 months. And came to understand he was not going to get better anytime soon. This contributed to the depression. He was put on the drug Keppra which worked terrifc as he had no more seizures... But it became apparent that the Keppra was contributing to the problem of depression. Actually credit to Dan has to be given for that revalation. He started to refuse the big purple pills. He would take the other pills but not those. So I researched and statistics showed up to 28 percent of Keppra users can be affected with severe depression. So Dan cold turkied himself off of Keppra. Odd he did not have any seizures , but the depression was so severe. He would not eat, not drink and did not want to do anything. He required emergency hyderation several times. In mid December he got really sick. He again was hospitalized here in Jamestown (thankGod) He had a bowel obstruction. His not eating and not drinking combinded with the semi paralyzed intestines ( from the stroke) resulted in the bowel obstruction. They used a nasal tube to resolve the issue for the time being. But the surgeon made it clear Dan will most likley need surgery in the future, but for now leave it alone. Now we are into January. Beth the youngest has been sick off and on. No time to check into it- just rolling with the punches. Dan is still depressed and insisting I quit my job. He is so so sad. It was so hard to leave and go to work. I requested partime status. And then seizure activity raised its ugly head... Dan had been taking lemictal a dual drug for both seizures and mood stabilizations. He was placed on this when he refused the Keppra. But the titration time of lemictal is a long and slow climb. After new seizure activity they added dilantin to the mix. He still has an occassional breakthrough seizure. But he is still not at theraputic levels as of yet. Dan has slowly been deciding to rededicate himself to therapies. He has formed a bond of sorts with the therapists. The therapists seem to enjoy his hard work ethic. Dan has never been a half assed type of guy. It has always been all or nothing for him. Our family is still plagued with health issues. Bethany the 15 yr old still is struggeling with health issues. They think she has ulcers and is on medication for that. I myself have an old illness visiting me. Anemia just had my blood checked 7.4 is my hemoglobin. I new I was way to tired even with all the stress I've been under. So I'll need to adress that issue on Monday. Next thursday the bioness guy is flying in. Dan has been approved for the arm/ hand bioness. And they are also bringing in a leg apparatus for him. I leg works I am just going to buy it outright. Dan is on such a good roll with his therapies that waiting for approval could and will take weeks. I'm moving when dan moves . not waiting for the endless paperwork and buerocracy of insurance to approve. Like everyone else I'll just plug along... one day at a time.

nancyl

nancyl

 

dan and nancy year

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. ----break 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

nancyl

nancyl

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