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same old - same old...


nancyl

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we returned to MN as promised to see the baby again with april and weston… and that was wonderful… Dan however was far from "wonderful"… same game different date…. so he won't eat, drink , talk , take meds -- the whole bit , stayed in the motel bed the entire time we were there.. i didn't waste a lot of breath on him and his behavior either… it is what it is.. and with the IV i can at least hydrate him - which i did… so i didn't sit and stress as i used to in the past when this behavior has presented itself… but still it takes away - a lot -- i just loose the "wife" in me cause the caretaker is all that is left.. i mean i can't really communicate with him, when he does this and it is like having a tantruming 2 year old… i am just blowing off a bit of steam here folks so no one panic… lol.. oh and this was before we even left town 2 days before , he had a tantrum and tried to jump pout of the car again cause we turned the wrong direction………. grrrrrrrr, in many ways since he still is so strong from years of old muscle ( the kind farmers have) he can on his only working side, when determined give a real fight… i feel like i live in a carnival or circus or something.. i mean even in the "stroke world" we are "out there"…..behavior wise i mean… i think outside of AZ i am done taking him anywhere…. i just can't do it anymore… i feel bad we never did much always saved our money, waited for "retirement" which is why i have tried to do so much with him, feel he has a entitlement to one - you have no idea pre stroke how hard we worked and saved ( and yes most of us on this site have - but this is my pity party ) lol--- but dan and i never had a honeymoon or anytime alone - we always said we would do "that" when we retire… so i feel like i can't go forward and do this that or the other alone… but after this past weekend - i have 2 choices either we both do nothing or dan does nothing ( but it appears to be his choice ) … i guess like everything - i will take it as it comes ….

so we did make it home - on the way home he decided to eat - we got home i showered him - he was a little "ripe" from his self imposed bed "arrest" ---- so then there is that - being married to a stinker in more ways than one...

one advantage to being gone, we missed the tons of snow that got dumped in ND , still was here when we got home, but had been plowed anyhow…

my microwave ( over the range) quit - so bam, more money shot …… and yep still haven't got the ducks in a row to get my taxes done….

i am gonna quit writing because my whining isn't fun to read or write, i guess i blog just because since i have no friends or family ( the non kid kind) to talk to… this was the kind of stuff my mom would help me with - but wonderful stroke in a round about way took her away to ( died in a car accident when taking care of my house/kids/animals in our car - well shortly after but the accident happened because she was here and not in her little apt- nope here helping me and now she is gone- thanks in a round about way to the stroke) --- ok ok - i promised i would quit whining, goodnite and good riddance to me and this whole past couple days… nancyl

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Glad you got that off your chest! I'll write tomorrow about my stupid stuff lately, so that you know you're not all alone.

 

Bad things do seem to happen in clusters, unfortunately.

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I took the advice of my Dad who said: "Have some fun on the way through life, no-one is guaranteed a happy ending," He took all his holidays every year as he had seen people take retirement and then die with a heart attack or whatever so he determined not to do that and lived till he was 87.

 

My Mum, like your Dan used to throw tantrums while we were away (Ray and I took them on holidays) and would chain smoke and sulk sometimes, Dad always said: "Don't let's stay and give her the satisfaction " and so we would walk away and leave her to get over it. Sometimes I also did that with Ray when he sulked until he stroked and was 24/7, then I just went out into the garden with my coffee..

 

Vent away any time you need to. We'll read it and know what you are going through.

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Nancy, so sorry. In reading your blog it seems you are forever trying to include or please Dan, which is commendable. Don't feel so guilty for his condition. It is not your fault. I hope you are not offended by my post but I just want to wish you the best and take care of yourself too. God knows you have been the best caregiver for him. Larry also has health issues that seem to be out of my control. We just do the best we can with whatever help we can get.

Julie

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no i take no offense -- i have done all i can the rest is up to him… we have all done the best we can, caregiver, survivor all of us… we just got a losing hand, but we all try to do the best we can with what we got.. i use to cry , i no longer do - i used to care ( in that deep soft way- that helps no one if you know what i mean) Now i am so stoic it is scary to me… i overheard a gal talking at a restaurant how she crud all the time and was very emotional, and a person trying to "council her" -- i wanted to say - hey , if you loose pretty much everything - your husband , your parent and the ability to be a good parent grand parent i can guarantee - you will no longer cry at the drop of a dime, but you will not be "you" anymore. just his shell shocked - person waiting for the next bad thing … thats me…. BUT i hardly ever cry - it has served no purpose….so at some point i stopped… i enjoy life some,but mostly i am just waiting for another nights sleep . one day is the same as the next for the most part - if want to go somewhere even just out to eat with dan, i have to shower him up, every duty ( you know), wipe him off, lotion him, clip nails and nose hairs, and mustache , put the socks on ( perfecty -thanks to dan) put the afo sock on put the other sock on , put on his brief, put on his deodorant, put on his shirt, roll a hand towel and put under his arm ( seems to keep the shoulder from aching ) put his pants on , help him stand, pull his pants up .. help him to the sink - where he can brush his teeth … then does his compulsive - backward cleaning… then i help him out to the living room, set up his iPad so he can play checkers, --- then i get to shower, by this time i dont even give a crap what i look like….it is so fun doing things NOT-- but neither is staying home…. i better up my dosage on my depression pills -huh- folks? lol ---------yippee ki yi yay---- what a downer i am...

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No honey - just another notch in the acceptance level. I was on the whirlwind you currently got off at years one and two. We did not travel, but we were in that vehicle every single day - at least four hours. Then nap, afternoon therapies or Outpatient. Nothing changed! Five years in - nothing!

 

And Nancy, it is truly not giving up, just conserving your energy, really. Some advise tough love - that won't work for me and I am pretty sure it won't work for you. I am the same - once I get through his dressing and grooming, shovel the ramp and driveway (you know the weight differential between Bruce and I) I could care less how I look and then even if it is just drive thru - not the WC in and out, Bruce in and out, I am just exhausted. Yes, there are days I cheat. We have to just to get the chores done and out of the way.

 

I have learned Bruce just does not think beyond linear. Good example: I get home the other day and he says to me "please empty my urinal." For once I did not have 47 things on my mind. I said "who's urine is that?" "Mine." "Then go empty it and rinse out the urinal while you are at it." It was not about waiting on him, that I know. He was trying to help and show me he did do something other than channel surf. But that next step is just not there cognitively. Yes, I am working on it. But I know, just like you do, it will be a long time coming.

 

Rant on honey. Get some down time. I hope you gave that new Grandbaby lots of hugs and kisses. Debbie

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Nancy, I so identify with the stoic part. In the beginning, I used to creep back to smell his cologne on his shirts and cry my head off, thinking of how it was all gone. I didn't do that very often, because whenever I got to the point where I would cry, it was because I opened the 'wound' again, and it was fresh. I was reliving all the things we lost that day..... jeepers, once was enough!

 

So, I don't spend time thinking about what we've been robbed of, or who would we be now, because we have lives to live and this is what they are. So, we go at it, the best way we know how. That leaves me in the watchful, waiting mode a lot. Seems there is always another crisis around the bend, whether it's a health crisis or a flood. I've stopped expecting things would even out and just try to stay healthy so I can deal with the next slap in the face, coming our way.

 

I really don't know how you've done the moves and the trips with Dan. I have a terror that his brother will die and we won't even be able to go (another state). You've done so much Nancy. Ha, we don't do all that big clean up deal to go out, or we'd just stay home. I'll tell you one thing that I use. Every morning, I use a 'Comfort Bath Cloth' from Walmart, has about 8 in it. They are about 5x thicker than wipees and I think are much better for cleaning the diaper area that really needs more thorough cleansing after all night. That's how we start the day, and he stays pretty fresh. I do realize that most people have perspiration to deal with, we don't seem to have that problem. But he does get a really rank stroke armpit vomit smell. Same bath cloth. Today I actually gave him a whole bath with them. Started with changing the night's diaper and using one there, then immediately put on a fresh pull-up. Face & hair=1, back&chest=1, hands,arms, pits=1, then I put a towel around his top area, and used one on his legs & feet. He doesn't get these everyday, and not showers that often either - he doesn't stink and he's not motivated to take showers anyway, like for fun. I couldn't function if I had to get him in the shower everyday. It would take over the energy for the whole day.

 

I took some stuff to H&R block and will return with more, as I find it. They filed an extension for me, so I can be late with no worries.

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I don't always do that big clean up either - usually every other day…but a lot of times that coincides with going out --- and i miss the smell of dan - he was always a very good smelling guy… i really, really miss that so i try to recreate the best i can --- hanging on to the past, but still everyone like a clean person in bed with them… our little non shower day is washcloths the cheapies from walmart…. they are small and easy to use… i fill a small pail up with irish spring soap - very little like a drop and wash him up similar to you and them dry him down - go through about 10-15 daily …. and i change our bedding almost daily -- not a through change out but i have tons of flat sheets and i use those -- to cover the individual bed we have -- we have a dual queen split -- so we are still technically in the same bed but each on a twin …. so each is covered with a fitted sheet ( and everything else - like waterproof) but that don't breathe so good… so then i use a flat sheet that gets changed daily usually but quick and easy.. and on dans side he has the pad but a twin sheet folded over to cover the pad to keep him from getting to hot… and that gets changed daily as well…. dan actually likes the shower and although he can't help much --- big surprise he can micro manage….. ( again i used to be a very independent don't listen to anyone type.. now the tantrum if i don't do it right…. and since prior to the stroke he certainly took excellent care of himself i understand his compulsive need to have it done just right) i know i am feeding the bear - but i have found the cost of not feeding the bear to be that the bear dies or does a darn good job of actively trying….. and then the who TBI aspect of it -- everyday , every circumstance is different nothing can be predicted with a TBI -- i knew that working in corrections -- a TBI person could just "go off" not necessarily even something they could control… and now my own husband suffers with it…. at least i had/have the background so i understand it - and the unpredictable aspect of it…. hope for the best prepare for the worst… always … my van is packed FULL of worst case senerio items… ----- i just get overwhelmed like we all do , everyone family is still needing mom… can i pick up weston.. yes of course, can i wash up your uniforms, yes of course i can, can i just talk you through a crisis , yes of course i can, -- but it seems every little thing i asks for is oh i am just to busy, ask the other kid, and it goes right on down the line……. no one is asking for more than one would expect in a NORMAL family but Dan usually has me so sapped that we are not NORMAL.. are we folks… and except for stroke net - no one wants to talk me through my crisis……. eeeeeeee - the mood continues sorry guys…lol

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Oh Nancy: you are just so tired and frustrated. I can hear it. After back to back trips to MN, I can only imagine. But again, I remind you it may be time for blood work for you. Think about that, please.

 

Bruce is a soap and water guy himself - but I use wash cloths. Showing my age - LOL. Wipes usually only for BMs. And actually it was the aides that asked me to get them. Shows how much I know.

 

I do hope you can get outside - ALONE - for a bit of respite - glass of wine or a coffee. Just a breather. And yes, honey, we all do what we have to in our own homes. I can not argue anymore about the Channel surfing. It is just not worth it. Upsets both of us and to what end? Go easy. Debbie

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double wammy --- my "obama " insurance has a 4800 deductible - i can't afford that at this moment…. and if i get checked and my anemia is rearing it's ugly head - then i will never get eligible for any other type of insurance ( with a lower deductible) before i was still cobra-ing from my previous job and could afford the nickel and dining. i got to make it at least on paper for 2 years with no chronic issues with the anemia ----ummmmm, yep …. geez i am gonna have to get a job just to get off this stupid obama insurance ( bc/bs) but still it really doesn't pay for much till i hit the 4800. then it pays 100 % - it does pay right off the bat for preventative - pap smears, ammo's and the like … but hey i know we are all in the is boat - sinking fast …..

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oh and something some of you maybe don't know but i have been given a heads up -- the hospitals - clinics and etc… are starting to call you to "remind" you of your portion of the payment will be X dollars for whatever procedure - and if you don't have it - then they offer to reschedule for a time one actually has the money….. and this is for non elective stuff , like a gallbladder ( not like a boob job- they always did that for the "elective stuff") but now even medically necessary procedures they are "peer" pressuring you into canceling procedures if you don't have it all at once ….. i haven't run into it personally but - a gal i know works for a hospital and that is the new thing…. at least it is new around here….

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I often feel like I'm living in a wind tunnel/blender, and this with having a stroke surv. who has a wonderful sweet attitude. I would be a goner if I had to put up with acting up, a lot. You complain all you need to Nancy, maybe it will help you de-stress, I don't know how you keep going. You have my kudos everyday!

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Hello Nancy, just reading your blog( shame on me) , and keep on venting. Get it out of your system. My doctor said the reason my blood pressure is high, I keep to much inside. She is correct, I don't want to seem that Iam complaining, and my Mother taught me there is always someone worse then me. So I would think of that before i open my mouth. Now,I go walking, and my keep fit classes, what a way to get that stress off.All so, my Dad would say "never go to your coffin, saying could off, should off, would off" go saying "life owns me nothing"! He is still going strong and he is 87years old!

 

Nancy, you are a great caregiver, and you give your all to Dan. So, go sit outside, get some deep breathe, a glass of wine, play some jazz, time for Nancy.

 

Please that you got to see the baby.

 

God bless

 

Yvonne

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