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Dan comes home today....... and sadness--- and more.. in case you are bored..


nancyl

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dan can come home today... he will continue to be on oral levoquin ( antibiotic) to continue the combat with the sepsis.... i wont go into him coming home a lot --- i am happy , maybe a good nite sleep ?? I lost a good friend today--- she has had stomach issues for a long time...and apparently her colon burst and sepsis set in on her immediatley... she was at her moms for easter meal got sick, ( her mom is a OR nurse) --was taken to the hospital and airlifted out... but she passed away early this morning... now we were not coffee buddies...but she was one of the few who did what she said she would do and helped me with paperwork ( i think i wrote about that last year - summer) .... and we knew each other well, ran in the same groups, and worked together for a number of years... Now as you guys know i prayed for dan in those dark hours-- to ease his pain-- take him quick dear lord.... let be what will be ... and dan stayed and i am glad he did ( no doubt about it i am glad he is with me) and apparently this is where he belongs God has made that clear... But the loss of my friend to virtually the same issue -- dans intestines/colon area that was what was popping in and out of the hernia and just today the surgeon told me it had a little discoloration but was all living tissue. and now we all question the true source of the sepsis... was it the UTI or the herniation of the bowel -- i lean towards herniation of the bowel as he never really improved till after the surgery.... but now a girlfriend 36 years old with 2 small kids has passed of the same "type" of issues dan had.... Of course it is what it is... nothing to be done and spending a lot of time wondering is useless... kayla was a wonderful person who had a absolute love of christ - so - no doubt she is in a better place... it is us survivors who are left to hurt... You know I couldnt make this stuff up... one thing after another after another....rest in peace my friend Kayla .............Nancyl

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So sorry for the loss of your friend Nancy. You have been through so much and now this. Yes, she is in a better place but oh so young.

 

I'm glad you have Dan with you at home and maybe now you both can get some peace and rest.

 

Julie

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Nancy I'm so sorry to hear this news but you have my prayers for your Dan, my condolences for Kayla, with 2 small kids, and her family of relatives and loved ones close to her as you were. It's always very hard to loose friends this way. Tell Dan to get well fast it's a long way to Texas by car. Dan needs our prayers so keep us posted please!

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Oh Nancy, I'm so sorry this young lady had this happen to her. It's hard to think that this wasn't discovered after her having the problem on-going.. but then again... with the doctors we've had, maybe not so hard to imagine.

I do feel it was the reason Dan went sepsis...and also wondered if it had smoething to do with him stopping eating (this time), but he couldn't really express, maybe something he was feeling inside.

 

You both remain in my prayers.

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Nancy: I am so sorry for your loss. You are right in seeking some measure of peace in knowing that she did not suffer long and hard after the herniation. Please try to find some comfort in your faith and the love you have for this special friend.

 

Good news on Dan's homecoming. Been way too long and now he can begin to recover nicely in his own home. Some well needed time off and rest for the both of you.

 

Praying for all of you. Debbie

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Nancy :

 

I am so sorry for your loss. We can never understand God's grand plans on why some people surviving & some people not making. I like to believe we all come on this earth school to grow spiritually & when our work here is done we all go back to our real home in arms of God. I tell my hubby I survived for you & kido since at your age where will you find good looking woman like me lol

 

Asha

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Dan is already up to "whatever" its called, stubborn- refusing -angry-wanting to die .... so we did ok all day more or less the home health gal came in.. he took his morning meds no issues - ate drank, even up and showered which tired him out... then he took a nap i went and picked up his meds ( michel was here) and bought groceries... came home he was still asleep drank a milkshake, weston came over we played - dan slept, i took weston home-- then had the invite to take him to the circus... i jumped a memory.. Erika and michel were both with dan... i figured no issue just go.... wrong dan melted... got himself up insisted on leaving -- almost smacked erika who was trying to block him fro leaving... ( yes he was in a wheel chair scooting himself around......) so i was at the circus getting franitc texts... i happen to look at the phone and start texting back , they come and get me... dan is in the truck-- looks at weston is angry at the 1.5 yr old ( are you kidding me ?)... so i pass off weston to erika who takes him home with his dad... ( westons dad has a spinal injury making it difficult for saftey reason - kids run) for him to be with weston all alone at a event like the circus.. so i get in with dan.... and michel... and we drive towards home -- also the hospital area same area... dan doesent want to go home... so we go to the hopsital lot... nope he says he will be good and go home --- meanwhile he made the attempt to open the pickup door and jump out... couldnt -- thank you safety features !! so now in the lot of the hospital dan agrees to go home... and i sit on his lap to prevent the attempt again... we are in a small nissan pickup and michel has to drive not be worrying about dan opening a door on a fluke... so we get home he gets into bed and whats next folks ???? refusal of meds - including the very important antibiotic .. and his INR is 1.2 so i have to get the pills in him... so i call the hospital crying -- what do i do... ??? his veins are not good for IV's a pic line and port are not good till the sepsis is resolved .... michel goes in and basically said the ambulance is gonna come and haul you in... i dont care.. dan says... michel told him... your gonna get strapped down and hauled in.. for what ever reason he took the pills while i am crying on the phone with the ER doc... so what the HELL dont i get any breaks... we dont get any breaks... so i am clueless in North Dakota... unfortunately when it come to the brain i doubt anyone can help me or dan.... maybe my husband - every piece is gone... who is this man... the man who hates the fact i took my grandchild to the circus??? this jealous person devoid of compassion, love, empathy possibly humanity ??? who is he.... i see fewer and fewer glimpses and i am starting to forget the man he was , this is not him... and now i truley see how alchoholisim is born... as i pour a drink......... and i know that is not me and that is not him... who the hell are we...i am not a alchoholic yet, not even close but i never was a turn to a substance gal ( well food) -- and now i sit typing with a drink close at hand... just one today... and will try to hold my ground only one not two...the girlfriend who passed away-- in the end it wasent her stomach necessarily but a fast bacterial infection that went septic... she started throwing up on Sat. and by sunday she was being airlifted and died of sepsis ... and now beth is throwing up -- there are bugs galore going on... but i am so worried ... and i know worry fixes nothing....

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Nancy, I am so, so sorry and sad for you. I would be so angry. I know it's not Dan's fault, but I would probably be angry at him, too. Mom is jealous of everyone, too. It's so hard. So sorry to hear about your friend. It does just seem to pile up. You are strong and I will pray for you. That's all we have anyway.

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ok so - rather than spread my misery with new blogs daily i am just gonna build on this .. if people are following , they will find us, but frankly if i read some of my posts i think i would run away screaming.... so i called the nuerologists office, the actual doc is out of town, the PCP is on maternity leave... but got a good nurse who helped as much as she could... and she did get in contact with the doc for further instruction.. so emergency psych appt.---- emergency to the clinic is the 22 nd LOL --- but I knew that... so no suprise here... i asked the nurse to have the doc review ( doc of psychology) dans records -- the psychologist doesent know him anyhow... and if he feels there is someone "qualified " to help us please refer us on... otherwise the appt is the 22 of april....... the nurse of the nuerologist said she feels dan is having anxiety issue ( dan NEVER EVER had anxiety issues prior, but yes i agree with her - anxiety related) and dan was getting valium IV at the hops so he may be having some slight withdrawal issues .. so a small titrating down script has been written to wean him, and to have on hand for times he is experiencing anxiety.... then we talked about the new ( we think) blood flow to the brain.. with the opening of the occlusion from the carotid... and we talked about the possibilities of the blood flow... is he like a two yr old, experiencing emotions and unable to control them...... bottom line no one knows, no one can help ??... i am not sure it would matter where in the work we are--- kinda like the puzzle book - where in the world is waldo---- i have no idea, where waldo ( my husband dan is) is... i sure wish i could find him....

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Glad you sought out a psych doctor, they may have some insight. We had to wait at least two months for our first visit, so you ARE seeing him fast!

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I was worried there would be a set-back when Dan came home. So sad it happened. Really, Nancy, you have way too much coming at you. Way, way too much. I want to whisk you off to a desert island for a week with no cell phone, no contact, and lots of the best food on the planet and a massage every day.

 

I sure hope this new psychiatrist understands stroke issues. The two are so linked for Dan right now.

 

I will say this. I wouldn't be able to do what you are doing with Dan lately. I know I would have to place him because I would absolutely fall apart. I'm not saying that is what you should do; I'm just sure I would have to. So I give you kudos for holding it together as best you can.

 

I'm sorry for the loss of your friend. You may remember that my very good friend died just after Thanksgiving. It's hard. You and Dan continue in my prayers. I hope for easier days ahead. ~~Donna

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believe me the thought of placing him crosses my mind a lot..... but then i return to what the nuero PCP said-- Dan would have been dead long ago if i had put him in a nursing home...and i totally agree--- i am hopefull things will improve... i even have a idea, a friend is considering a job offer she recieved to manage a new motel opening.... one of the few things dan can do and enjoys is folding, wash clothes , towels ect... my thoughts are dan could go an just do some volunteer work doing that... not that they need a volunteer , but we would actually -- fool dan into believing he is working again... but he would not be scheduled it would be a kinda come when you can type thing... he has to believe he is of value and working i think.... first he has got to get stronger and recover from this... so it is a way's down the line but it is a thought i have turned over in my head a few times... and this possibility just turned up --- we could volunteer anywhere , but i think dan needs to feel he is actually employed and "earning" ... am i bad or what ? thinking of fooling my husband into believing he is employed?? is that mean, ? i dont think so.........??

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Nancy, I don't think there is a pill for what Dan has but counselling may work or at least give you a break while he is in there! I don't know what would happen here, I think short term hospital stay in a psychiatric ward and and then a lock-down unit which I know is not what you want. When you threaten a health worker here it tends to happen automatically.

 

The volunteer job could be anywhere they deal with folding. A friend of mine from long ago had a husband who had been a bank manager. He got early onset dementia and they both retired. She was part of a volunteer organization that placed people with Downs Sydrome so when she stopped paid employment she had started volunteering there. To her surprise her husband loved folding clothes which was one of the jobs in the sheltered workshop and she and he worked side by side on any day of the week he felt like going there. Proved to be a sanity saver for her.

 

Every time you post I try to think of something that would help you cope. Wish I had a magic wand, maybe that would solve the problem.But life seems to hold more difficulties than enough for you. Every time you solve one problem another takes its place.

 

(((hugs))) from Sue.

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Here, at least in NY, it is a law that if someone says they want to kill themselves, it's a mandatory three day stay in a lock down ward. So watch what Dan says! I go into the exam at Ray's psych visits since I have to translate...at least I think I have to, I do that with every doctor and no one ever said boo. I assume everyone in my situation does the same? But anyway, tell Dan not to say he wants to die or anything like that, because I'm sure the doctor will ask. him. That's one of the standard questions, every visit.

 

As far as "fooling" Dan, I was told that to get Ray to accept daycare, I could tell him he is "volunteering"; that he is not a patient. The workers there are in on the scheme, and it works well all around. Unfortunately that's not how Ray rolls, he's not a go-getter or a do-gooder, but apparently it's very common.

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HAHA colleen Ray would never "buy" the employment or volunteer work... he is way to cunning... he might be locked in his body and cant talk that well but he "knows" ... a misguided doc here once tried to get dan in a lock down situation-- which i wouldnt mind if they have experience at all with people lie dan... problem no one does, and our state hospital ( mental) will not take them... our state prefers to take care of child molesters and put them in a hilton situation ( dont get me started on that) .... i also contacted our state mental health unit... nope they have no one and no ideas... dan went through Fargo once to a psychiatrist -- no luck, gave him a script for remeron which only made things worse... i even had a psychologist come out to the house and try to talk with dan-- no luck their either although the later guy tried --really, really hard .... so part of the issue is a lock down situation will not take him, and since i have always followed through with every recommendation and found its a dead end ... and dan never says i want to die, its not his verbalization, but trying to jump from a pick up may or may not mean he wants to die.. i dont think thats his true intent i think he just has no way of telling us what is wrong, so he just panics... when he was really sick with the sepsis he told me he did not want to die... the nurse who came in yesterday was able to get dan to describe his symptoms the night of wanting to jump.... he said his heart was pounding ( apahasia talk, and gestures) and his skin was crawling... he showed this by making his hand into a claw and went all over his body and hair... and from that we established itchy crawly skin... consistent with both anxiety attacks and withdrawl symptoms... last night - no issues thank goodness. but michel was real sick running crazey high temp and coughing --- stayed away from dan... but he is better todya and went to work...beth has a ear thing and me well, my back hurts and my house is a mess...............but i think we are on the mend??

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I had that fever/cough thing last week and boy did the house show it. I'm catching up finally!

 

Yeah I don't even know if they would have a facility here for Ray if he had another nervous breakdown. Hope I never have to find out!

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Nancy: I don't know what to say, of course. But do want you to know I read everything and you are all always in my prayers.

 

In your spare time - LOL - can you get on line and Google Neuros who have experience with Carotid reopening? All his scans can be sent electronically, so that is a plus. Neuro would know the areas damaged, what is still a "grey" area and what might have been affected by the reopening. That has to be a super specialty and the Internet may be your best friend there. All I can think of now. If a pro could just look at the scans and say "Nancy, I truly believe this is a Neuro issue" or "No, I am leaning to a Psych issue, based on what I see."

 

I really don't see a "withdrawal" issue. Dan had so much hydration in the hospital. And personally if I had a patient that was that out of control, I would medicate them. Because they need to calm down first and foremost. I am talking about a one time dose that the Doctor has already prescribed for that purpose, just so there is no misunderstanding about what I am saying. (LOL, I'll message you that clarification!)

 

We talked way back about the GTube and access was good, but how are you going to get to it if he is combative. And if he sees it as a control issue, he will yank it out. Same here. You got him home, finally safe and somewhat calmed down. But like everyone else has mentioned, this is now happening in public and you live in a small town. I too pray he is not headed for a stay in the local Psych ward compliments of a complaint to the hospital or the police.

 

Know I am thinking of you. Just trying to kick around some ideas. Maybe light up an idea you have been mulling around. Just don't know. Prayers, Debbie

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Little better day today... he has some swelling on his affected right side--- no tantrums, did some walking ( just to and from the bathroom and living room) ... bitting my lip and waiting .... for the other shoe to drop.... but i think every pair our family owns has hit the floor... hope i dont need to go buy new shoes only to have them fall to... LOL

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Again --- a friend daughter passed away last night she was 29 this was my friends last living child... she died of Sepsis..... same senerio as the other young woman i wrote about.... If ranting and Raving helped I would do it... but it does not help at all.

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so i am still "reeling" over the loss of a friends daughter... ann my friend has been one of the few just like kala was one of the few... who actually was there, with true intent... i i knew anns daughter, she was 29 and smiled all the time.. she had issues - what kid doesn't- but was a beautiful girl full of life. Ann lost her only other child to suicide 5yrs ago.. so she is really, really lonley right now.. the lonliness only survivors of tragedy feel. she is married to a guy who is decent enough but he always made issue those weren't his kids - they were already grown for the most part when ann got married to this guy... but he is a man of some means and no children of his own.. but he is a selfish man - worships money.. ann will have to borrow money again to bury this child from him ( yes borrow from her husband of means to bury a child) ... the child who died 5 yrs ago she had to pay him back every penny... i personally wouldnt stay with him-- but each of have our own reasons - i imagine people look at me and think the same... some have been bold enough to actually say- why not put dan in a nursing home... and i am ok with anyone making that suggestion unless you happen to be a uninvolved observer, who has never extended a hand in friendship ( so my stroke netters ) can offer up suggestions --- i am ok with that... you guys get it- you live it.... but strangers here in town sometimes just think they know more than they do... i fell sort helpless for Ann - i should be there for her, with Kala she had family -... with ann she has family as well, but , and then theres the husband... who would irritate more than help , but maybe this time around he wont be such a jerk...but as a friend i want to just be there for her... but if i leave here for an extended time dan unfortunatley will probably melt... and i gotta save that mini time away for the prayer service tonite for kala , the funerla tomorrow for her.... and then next week Anns daughter prayer service and funeral... if dan were stronger i could take him with but of course his endurance is nil.... if i can get a shower in today i will be happy ( for him) ..well thats my update... living a tragedy as of late... lets hope this can turn into a comedy at some point or something anything other than this..... and then there is the old adage -- be careful what you wish for...

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It is so hard to be the friend we want to be when we are caregivers. I felt the same way when my friend was dying of cancer. She had people around her and good family support. But I wanted to be there too, with her, giving support and love. I was able to spend some time in her last month because Lauren was in Rehab and then the nursing home so I went to her more often. Would it work for your friend to come to you sometimes? She might welcome the break. It would still provide her with the support she needs but allow you to be home with Dan. Not sure he'd tolerate that. You'd know best about that.

 

I know you are feeling so much care for those who have been lost to this world and their loved ones. Just be sure to remember that this is your loss as well. People who have been a support to you are now unavailable due to tragic circumstances. This is such a difficult time for you. And now even more. I know there are very few moments just for you but if you can snatch a few minutes here and there to just do something wonderful for yourself, it will help you get through. If you have family in for any reason, take a few minutes away even just in the house. Good hot bath for yourself, cup of coffee and a good book or magazine, sit outside if the weather permits. Anything. Just a few minutes for you.

 

My good friend who died was one person I could talk to about anything. We shared with more depth than most of my friends. I had been given a Willow Tree figure that had two women sitting together talking. I put that up on my mantle for the whole of December. A way to keep her in my thoughts and honor the relationship we had. A way to recognize that our relationship transcends this earthly life.

 

You continue in my prayers every day. You do seem to be living a tragedy right now. One day at a time and you will live your way into a smoother life. Hang in... ~~Donna

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truth--- when you are a caregiver -- you give up" caregiving" for others because your abilities become exclusive to just the one.. sad but true-- not much time left in a day to go for coffee or a drink ( if you happen to find someone to be with your loved one) and really we just want to go to bed -- we are tired, so "extra " time gets devoted to sleeping or playing catch up for some overdue errand or duty... well dan went with me to Kalas prayer service --- he absolutely insisted , i had went to the viewing, and brought home a memorial with her picture and dan was like," explain"... which means , just that.. explain what happened i did and he was so -- oh my god -- about it ( my interpretation) but he insisted on going to her prayer service and made me talk about her although i was not prepared... he felt the need for me to say something... so i spoke a few words about how she took time out of her life to help me with paperwork, little did i know how little time she had left... i totally was not prepared... but it is what it is... then dan wanted to leave a few minuets early ... ( ok by me) he insisted i push him to the casket and he did the sign of the cross and motioned for us to go... bittersweet to see this .... cognitively today he is with it... never mind he slept more or less till 4 pm--- his body is still recuperating from all... he is so tired... i havent seen him sleep so much since the stroke... his brain is really thinking or rewiring or just plain tired... but this sleep reminds me of stroke sleep.... anyhow i am going to bed myself...

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so today was interesting ( all my days are , but not always the good kind of interesting) so dan fell asleep around funeral time.. and i really just wanted to go it alone... so i left hoping i could make it through the funeral.. It s spring here in ND which presents new problems for wheel chairs ( and it was muddy at the funeral parkinglot - new church no real pavement yet) anyhow so i sneak out , beth is home about half way through i got he text --dad is up and wants you....so i didnt even try to buy time.. i came home.. he wanted to go to the casino so i fuel up the car, and buy some mcdonalds... then he directs me through town.. and its not the casino ( we havent been to a casino since the AZ disaster) he wants to go to church -- he had confused days... sat nite mass is 4:30 and sun nite mass is 6 :00 ... and today is sunday... so we went back home and waited out our time so he could go to church... I'm half tired from the half funeral of a young mother /friend/ former co worker... those are always hard ones... then dash home to prevent a dan meltdown..then to the church -- then home -- then to church-- then he wanted sandwichs .. which i thought was subway.. pull into that lot -nope not subway -- pizza ranch--- i point to pizza ranch--- nope pointed in another direction... guess where apple bees.. i am a a little sick of that place but oh well... he ate, he drank and was pleasent but now i am exhausted... but happy he is moving around again.. showing some intrest in life... tomorrow PT and speech both come in. alhtough he has progressed fast so i dont forsee the in home need to long... well just another build on to my blogging... reasonable good day.. no meltdowns, tantrums... cooperative... so whew one day down..

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so i go to bed half excited - dan was up and moving today -- hooray, he wakes up this morning and he is aching all over.. just his stroke side... his entire stroke side hurts... so i gave him some valium hoping that relaxes him some... sucks...

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nope still asleep - well grimacing in pain - would be more accurate-- says just leave me alone.. he seems to have a headache... hope this isent the start of something new...plenty of bugs everywhere... but as i said before this whole thing reminds me of post stroke... dan really always would have 2 bad one good for a long, long time post stroke... hmmm will be interesting....

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Nancy, how about you blog a week at a time, people will not comment if they think they have already commented on this and as it gets down the page a lot of people only look at the new blogs for the past few days. On some sites the most popular or most commented on comes to the top but not here where we go in date and time order.

 

I am reading it all and can see your struggles with Dan and his personality. Are there classes somewhere in behavioural management? Sometimes ADHD kids parent have to do that course. I think the church times could be managed by having a large white board with time slots so he can "see" the date, the day, the time and maybe with your help accustom himself to that. I used that strategy with Mum who was similar in some ways though she could not distinguish night and day also with her Alzheimers. If she wanted to go shopping at 6am I would tell her her favourite shop would not be open yet. If we did get somewhere early I wouldn't take her home I would take her for a walk, good for her and me. Ray would sit in the car and have some peace and quiet.

 

I can see you are doing the best you can in difficult circumstances and admire you for that. (((hugs)))

 

Sue.

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