Death of a Child

yes, that’s what happened.

But it didn’t just happen. We were strongly encouraged and made the decision to discontinue life support.

However, because of a long series of involved circumstances (and possibly not but if so we weren’t aware ahead of time) we had a chaplain involved. This led to not having to do this just in the hospital room but being able to do this in the chapel, which made for something very special and meaningful. I’m just not able to say much more right now but mainly wanted to post this to raise awareness of the hospital chaplains and things that are able to make happen beyond just coming into your room and being with you there.

Update

Gonna just try to do some clean-up on some follow-up of things I’ve posted before what with all the changing over and smashing together; things seem rather jumbled.

First in the middle of everything else going on with new granddaughter and dad after getting back dil had a hearing with the judge on her disability after her lawyer had gotten all her records together from the other state regarding all of that so thought she would be approved but I was concerned because had a friend who was going through the very same thing and was denied because of lack of current and specialized enough records and hers were from several years ago and sure enough that’s what was said she doesn’t have enough current specialized records because she’s not been under treatment. Now, granted in one sense how are you supposed to be able to do it without it when you need it to do it because you don’t have any money but then on the other hand at least in these situations you do have mental health which she hasn’t wanted to go to but then she did finally make an appointment with them for this past Friday, not so much because of this but because of what’s happened with the hospital where the baby is; they’d told her they would get her whatever she needed, she taking that to mean her medications but then they told her they couldn’t help her with that, at least with her not staying down there all the time, that if she was going to be up here, she would just have to go there so that’s what finally did it but then like so many times before since the appointment was for a couple weeks out by the time of it she’d gotten her mind on other things and forgot about it until afterwards; I was concerned about that with what was going on by then and meant to try to remind her but she gives you so little time with what’s going on that it didn’t get done and then this time by the time she remembered they said she’d done it so many times that she couldn’t go back for a year this time. Now, granted, in the meantime, she’d spent quite a bit of time, but then that was mostly right after the baby was born going to the ER and getting medication until they finally stopped that and told her she would have to go to her doctor, which, by then, it was time for her 6 wk. checkup and he did give her something; he wouldn’t before and by then she was doing better then but she did go to her clinic she normally goes to but it doesn’t have an actual doctor but only a nurse practitioner who can’t prescribe what she was getting from the hospital but did give her something that she’s had problems with before so son/husband didn’t want her to take so paid for that for nothing. But it didn’t last long until she had worse problems than she’d had before that led to other issues that I’m not sure I’ve gotten into here (will check) that led to the hospital where the baby is telling her that and they did get her a counselor for a while who helped until the baby got transferred to Boston so since she wasn’t there they wouldn’t continue with that for mom so when we got back a month later things were not good again even though they started it up again the damage had been done and had to start all over again when needed to ramp up not slow down and things were so much more complicated that she couldn’t handle it so couldn’t stay down there like she needed to to get it done so leading finally to them telling her all that. So believe somewhat what led to this past weekend’s ER visit with getting her medication again so here we are again. So not sure where we’ll be going from here

Kicked out at 4

yep, that’s what happened. when he finished his 2nd bag they just kicked him out but maybe just as well since with them coming in every hour to check his vitals he could never really get to sleep anyway so came home slept an hour, woke up for about an hour, back to sleep, then up for breakfast.

Grandson finally got a trolling motor for his boat that he got when he did the shut-down work for the chemical plant little over couple years ago, so finally gonna get to go out on the water for the first time fishing; been doing it from the bank for a while now.

What a girlfriend, course she got a job doing the same thing his housekeeper/bath aide does for the same company; tried to get her job doing it for him full-time but didn’t quite go that far but guess she’s doing her payback now for the time he spent with her in the hospital and having to get somebody else in to stay with him while he did, especially after what that’s ended up costing him; might have been better off to have just hired somebody so glad, in that sense, she’s willing to do it and let him have this time; makes a big difference in him but just hope she doesn’t do the same thing that actually started all this if something does happen and she just gets him back to bed and doesn’t say anything and we’re back to the same problem tomorrow as we were to begin with or even today if he crashes today from lack of sleep. But we’ll see.

Blood Time Again

But first never did explain February in the Fall; anyway when they did dad’s mental assessment and asked him what season it was – remember this was just Monday, March 4, – he said it was fall but later when they asked what month it was he said it was February, which the doc let that go since it had just turned March – hence apparently February’s in the Fall – oh well

Okay when he first got out of the hospital he was having to go get blood infusions about every week, then with getting his meds tweaked it got to be about every couple of weeks then down to about once a month till now it didn’t seem like he’d had to go for a little over a couple of months now. And the doctor still doesn’t just write orders until he’s below 8. But today while his housekeeper/bath aide was there and grandson was gone she called him and said she hadn’t been able to get him up to eat; he’d been laying down on the couch, which he normally doesn’t do - she’s there from 11-1 and he always eats right at noon  – but when he got back she’d been able to get him up, he’d eaten, and she had him in the shower – he has to get at least 2 a week, hardpressed to get any more – and always on Friday for church on Sunday though not sure he’s been going lately; need to check on that – then usually on Monday and definitely this past one for the doctor appointment, which usually for those any way regardless of what day they are, but didn’t get done last time probably since on Wednesday and she doesn’t come on Tuesday and it was before she comes. Anyway went and got the paper but then wasn’t long till he was laying back down again, which he normally doesn’t do until his blood is getting low again. So he called the doc but they still didn’t want to do based on his levels and actually, sorry he called him before he laid back down, based on this morning, so wouldn’t so then called back after finding him back down so they said either tonight or in the morning so he went ahead and took him tonight but seemed to take longer to get him actually in a room and started this time. Apparently they’ve usually been able to get the blood quicker since they already had his lab numbers when they were taking them more often but since they’d cut him back to only once a week, having taken them Monday when he went to the doctor – which he is get them done every Monday any way – wasn’t recent enough, so they had to take them again – even with his doctor’s orders, hm, not sure I understand that – and get the reading before they could order the blood so it was after 7 before they got started; starting at 3 it’s normally midnight before they get through so this time think they’re gonna just let him spend the night there since it will be so late, early in the morning. But apparently it finally hit again that he either got low again or he’s not being able to tolerate the new low, even if it is higher than when he’s needed it before, which will be another issue; guess we’ll see about that.

February’s in the Fall

This makes a little more sense especially since never heard of dad having functional assessment before even though, granted, this last year’s been pretty crazy and so was the one before but I was definitely with him the year before (even though that’s the year we lost mom but after that and we’d rescheduled his appointment when we actually went it was all pretty normal and there definitely was not anything like that done then; of course, that was in the spring and this was in December and I didn’t go with him then; actually not sure anybody did so maybe was done but at least didn’t hear anything about there being an issue; of course he didn’t have the pension then so wouldn’t have affected that so wouldn’t have gotten that letter (oh, haven’t mentioned that yet anyway) but think would have started with services (oh, yes, haven’t mentioned that either) which weren’t mentioned until the fall he had in the spring (confused yet?) that something triggered it and I suspect it was the fact that his appointment was on a Wednesday morning, meaning that his housekeeper doesn’t come on Tuesdays and not until 11 every other day, which means she wasn’t there to make sure he was taken care to go to his appointment and sure enough, on the notes it says his appearance was disheveled – and worse I won’t go into here – but goes to show what two guys baching leads to; of course, that was right at the low point of all the situation with grandson staying with dad; right before we got the pension finally through like it was supposed to be; right when grandson’s main bill that could have caused everything to fall apart was at its worst and he did begin to do some things that, yes, I knew about, but knew, and know even more now, could cause some problems with it all if it were investigated, which could have been, and maybe were, we’ll see, so he was not doing too well when it came to that appointment, which he didn’t even realize, what with everything else that had been going on that he had been doing a good job of taking care of him about, how major that one was and didn’t even remember it that way now so didn’t remember anything about his appearance or the assessment; well, seemed like he did remember being asked some questions but didn’t think much about it and still not really sure exactly how this works but we’ve decided it’s in the system somehow because don’t think it was deliberate on the part of anyone there that did it, at least not at the time of realizing what the consequences could be.  But learned it’s a “trick”; if you answer the least bit off, like a husband who lets his wife take care of the bills to the extent doesn’t even know what his house payment is, next thing you know you can find out – and only because people weren’t finding out until after it was done – you’re being proposed for being declared imcompetent, incapable of handling your own money. Well, we’re sure if they were asked something like that in December they would say it like grandson was not thinking anything about and sure enough that’s what happened. I’m just glad it was this year and not before because like I said until they passed a new law just last year they didn’t have to let you know ahead of time; they just did it and told you about it afterwards and appointed somebody and you didn’t have a chance to have who you wanted; you couldn’t even have a family member; it had to be somebody professional that they hired for you and even though they encouraged these people to do it for free, yea, right, like who’s going to do that when they allow them to charge 3% of your pension for doing it – so many people saw what they saw – because they didn’t do their job like they were supposed to – an easy extra $350 a month – per person – that they did this for – so it became quite the lucrative endeavor. And then to prove their point that their money was used for expenses first they had to be able to stick their noses in the rest of your income and money besides your pension so they had to have access to alll your funds, so you can just guess what often happened then and the person themselves would have no idea because they no longer had access even to the information about their accounts and certainly coudn’t do anything about it if they did find out. Until some organizations really got behind it and got this law passed last year that first of all required advance notice so you could do like we did today and challenge the proposal of imcompetency and then if you didn’t do that you could at least have a family member be the one to take care of things; now they did also start requiring background checks, not that I’m sure that would really help in those situations because I’m not sure many of the people that were charging and taking advantage had anything already in their background but maybe that will help in the case of those that got caught up with and then somehow would be trying it again. I have mixed feelings about it – with white vs “black?) collar crime – but at least for the most part it probably would allow family members. I’m just glad there was a cancellation today so dad even had his appointment today, so quick after getting the letter, because they had told me that without that he wasn’t going to be able to have one for another couple of months, I believe. His doctor has apparently been having quite a bit of family issues himself because we went through that I think back in the summer with his last regular appointment before he went in the hospital or was it before then? I’m not sure now; I just know I remember sometime trying to get his appointment or maybe just trying to get in touch with him and he was out a lot with his own family. That may have been why it was so long to get to him after he got out of the hospital. Which wouldn’t have been such an issue except they already had his labs scheduled for the right time and he’s always been supposed to see the doctor within a certain timeframe after that so one or the other needed to be moved and interestingly enough they didn’t want to wait on his labs but I guess he wouldn’t have to actually see the doctor anymore now that we have all that set up online, not that he knows anything about that anymore than he really knows about any of this other stuff, like really why he’s even seeing the doctor; he just basically does what he’s told anymore. But anyway just glad this was an afternoon appointment after housekeeper/bath aide there so called her after found this out and asked to please make sure he was at his best for it; it could mean everything. So she did. Oh, and I may go back and edit this but in my tribute to her I’m not sure I put that she even got him something for Christmas so that really made me feel bad; she got him some new pants, maybe a shirt as well. But the pants was something he really needed; new being the key there; I’d gotten him some new to him while I was there (or did I?) gonna quit now

Your time’s not my time

Because it’s not March 2 here by my time yet so it’s not dear husband’s double S birthday yet but that ‘s okay because we’ve already given his geeky self his geeky present and he loved it – a digital indoor/outdoor wireless thermometer/humidity monitor that he’s been wanting for a long time but the one thing he wouldn’t buy for himself – then older son thought he’d get the jump on and remembered his dad’s birthday tonight but we’d beat him to; hated that for him so bad but glad he remembered! thanks son

Another anniversary

Just in looking back over this again to check about the truck realized (beside it being Valentine’s Day) a year ago that day is when we got our wonderful, wonderful housekeeper for dad that got herself in the middle of so much in our situation with everything that’s happened with dad this past year and then with everything with my new grandbaby and then with her having her first grandbaby I want to show her so much just how so much I appreciate her that this is as much a reminder to me to not forget it as anything – so thanks so much for everything you do and I haven’t forgotten