Procrastinating

I'm supposed to be writing a paper today.

The Use of Sexuality to Evoke Terror in the Gothic Novel

That's what I have so far! Well, not really. I have gone through both of the novels I am to use and collected up quotes and so on ... found the places in which sexuality is used to evoke terror, in other words. And I have downloaded a bunch of reference articles - we have to use at least two.... I have many, because that's about all I accomplished yesterday as well.

I have to get something down on paper... but it's just not coming and I am getting very very very frustrated.

The computer I was supposed to be fixing this weekend is also not co-operating and I am getting very very very frustrated.

About the only thing that I have accomplished in days, really, is that I did manage to get off my arse and go for a walk last night. Now that I don't have to be home for D., thought it would be a good idea to take the dog and start walking up to meet R. on his way home from work again. I used to do that - before the hospital, and before D. couldn't be left on her own ...and we both enjoyed it.

I haven't turned msn on. Don't feel like talking. I had no patience for phone calls yesterday - none! Ended up hanging up on J. ... bad timing on her part, mostly. Tried to lay down and have a nap in the afternoon and every time I actually managed to doze off the phone rang. She was the third person to wake me up!

Why am I so bluddy miserable? Nothing is going right. I have so much to get done and I just can't seem to do any of it.

It's not like D. was my mother. If anything, she was a burden I should be glad to be relieved of - and I shouldn't feel guilty about that because she would never have opted to become a burden; to lose any semblance of dignity, to live with so little left. We did the best we could for her, and she stayed at home, the way she wanted to.

I am not supposed to be so miserable. I am supposed to be writing papers, fixing computers, making up for lost time.

It's just not working.

The Letter

This is the letter that I have written to the nursing service which was supposed to have supported us in taking care of my mother in law at home... (although the actual letter, of course, includes names). I haven't sent it yet ...so I would appreciate any feedback - am I being too big a *itch? Unreasonable?

I have been asked by both T, the non idiot nurse, and by the case manager (different agency, that purchases the nursing services from BHC) to write a letter.


Dear Ms. S.


My mother in law, D., died this weekend. And while we understand that this was inevitable, and that had we received more appropriate service, D. would still be gone, we do have serious concerns about the lack of professionalism and support we received from the on-call nurse.

On Friday evening, D. was visibly in pain. She was moaning and crying out, her right hand was badly swollen (something we had not seen before), and we were unable to get anything at all into her. I did try to give her the codeine which her doctor had prescribed, but because she was unable to swallow, this resulted in choking and coughing. This, of course, added to both her distress, and to mine. Any relief the codeine that did get into her brought her was extremely short lived, and within the hour, her cries were again becoming louder and more intense.

When my partner came home from work at around 9:30, we made the decision – for the first time – to call the on-call nurse for advice. Surely there would be something in the comfort kit …. When we received the call back from A., I expressed my concerns and asked for guidance. She asked if there was morphine in the kit, to which I replied that yes, there was, but that it was to be injected, and I have never given an injection. Her response was – and I quote: “Well, I don’t feel like driving all that way.”

She told me that she would call back shortly, and when she did, that she had spoken to T., who knew D. better, and they had decided that I should give an acetaminophen suppository and the morphine could be started during the day, when her breathing could be monitored better. And that was it – no suggestion that we could call back if it wasn’t enough, or reassurances, or any other expression of support. She didn’t feel like driving.

The comment has, at this point, become somewhat of a family story – a joke, almost. But of course, it really isn’t funny.

Because she didn’t feel like driving, we are left to wonder whether everything that could be done to keep D. comfortable in her final hours was done. Because she didn’t feel like driving, R. feels as though “he dropped the ball at the end” – that he should have been more assertive, done something…

He has cared for his mom for many years. I’ve helped for the last four and a half or so, but he was doing it alone before then. We have done everything we could to make her life comfortable – and because A. didn’t feel like driving, at the end, he feels that he failed her. And we are left to feel as though she experienced more pain than she needed to, and to wonder if we could have done better for her.

While that one comment stands out as a glaring example of unprofessionalism, it was not the only instance that we experienced. A. also did the intake when D. was readmitted this time. After several phone calls and postponements (from ‘between 5 & 6’ to after 9 p.m.) when she did arrive she was clearly extremely tired and not at all happy to be here. She told us repeatedly that she was too tired to bother with all of the paperwork, and that she would do it the next day, or get someone else to finish up later. She shared a great deal of information with us about the challenges and activities of her own life, and about how tired she was – and these things were clearly the focus, as opposed to D.’s needs.

When she left, she said that she would return the next day to put a dressing on her hip and finish up – she did drop by with the dressing on Sunday, but clearly was not at all interested in either finishing the intake, or doing anything other than complaining about how long it had taken her to drive home the previous night, put the dressing on and leave. Had we had to deal with her on an ongoing basis, I likely would have been more concerned – but since we were not in her area, I let it go – a decision for which I am now very sorry.

The other issue which I think should be mentioned is that it is very disconcerting to try to discuss life and death issues with someone on the phone when that person is busy dealing with her child. If, when I called for support, it was the nurse answering the phone directly, I would be more tolerant – but given the system whereby she called me back, I would expect that perhaps she might have called without the child crying and carrying on in the background.

At the very least, I feel that BHC has some training and supervision issues. Of the three nurses who provided us services, the only one who was always professional and always supportive, was T. She – T. – is so well suited to her job, and I am so grateful to her for the support she gave us throughout. You need more nurses like her – people who would never ever dream of telling a dying woman’s family that she didn’t feel like driving for a half an hour to relieve her pain.

If you require any additional information in order to be able to address these issues, please contact me at ......

Still Writing...

"Well, that was a lot of work for nothing!" R. said this morning.

He didn't mean it, of course. It wasn't nothing. We've been taking care of her - his mom - for a long time. Over the last 4+ years, as Alzheimer's stole away everything that made her who she was, we adapted and arranged, constantly modifying schedules, approaches and expectations as her abilities deteriorated.

It wasn't all 'a lot of work' ... until recently, when she became ill. She stopped being able to support her own weight at all, and became bedridden. Then it got to be a lot of work. But she wanted to stay at home. That was always her wish, and she told us so over and over and over - back when she was capable of telling us. That's one of the things about Alzheimer's, of course - in the earlier stages... the never ending repetition.... which drives you crazy at the time.... but which you miss... Later, when its gone.

Anyway - we did it. We kept her at home. And it has been, as he said, a lot of work. And a lot of worry too - not so much worrying about keeping her alive - that wasn't the goal. But keeping her comfortable .... and supporting each other. I've been totally distracted ...still trying to keep up with school and all that ~fun~ stuff - but unable to concentrate.... hating being unavailable... for her, but even more so, for R.

And now it is over.

Yesterday was not a good day. She couldn't eat or drink - any time we tried to give her anything, she would choke and cough and sputter. We kept trying, but....

By later in the evening, the codeine and aspirin that I had managed to get into her wasn't enough any more. I called the nursing service to see if we should be using something from the 'comfort kit' that they had provided. The nurse on-call last night - not ours - is an idiot.... and I will be making very sure that the agency knows it. She asked if there was morphine in the kit. I said that there was, but that I had not yet been trained to give it.

"Well, I don't feel like driving all that way just to give it." Gee, thanks for your support! Anyway, she ended up calling our nurse, who lives closer to us. After talking with her, the idiot one called me back and said that they had decided that it would be best to just give her one of the acetominophen suppositories 'for now', and that our nurse would start the morphine today, so that it could be monitored better. So I gave her one, and it seemed to help ...some, at least... she continued to moan, but it was a lower, less painful sound...

And then... somewhere around 3 a.m.

....the moans stopped.

And now I am sitting at my desk ....writing.... while R. makes bacon and eggs. I have filled the tub - the plan is to go and have a bath before the family descends. But I am writing while the water grows cold.... I'll add some hot.

There is a mirror on the wall to the left of my desk. And in it I can see her. Her mouth is slightly open; her cheeks sunken. She is cold to the touch, now - but no longer cold, in pain, afraid, lost in the miasma of Alzheimer's thought.

We've called the doctor who will come to fill out the death certificate - first though, he told us, he has to go and pick up a death certificate. He seemed to think we should have one here, on hand, for his convenience. Gee, I'm sorry! Perhaps he ought to have mentioned it when he was here more than a week ago.

Anyway - soon he will come and do the paperwork. And then someone... who? The funeral home, perhaps? will come and take her away.

It is so quiet.

It is going to be so quiet.

It was not all "for nothing"

We did everything we could for her - for more than 4 years, and especially for the last couple of weeks - to allow her to be as comfortable and as happy as possible.

We done pretty damn good.

And now that it is over, we can be secure in the knowledge that we did what needed doing to the best of our ability.

And she is - finally - at peace.

So Quiet

It is 4:45 a.m. ... and it is so very very quiet

she's gone.

She is still warm - mostly. Her face is cold.

I am sitting here in the living room and her laboured breathing is no more.

And even though I feel the tear rolling down my cheek

I am so very relieved.

for her.

Thank God that she is at peace.

I haven't woken Ross.

What would be the point?

He can say good-bye when he wakes.

And we will make phone calls

and be sad - but under it all

we will be relieved as hell.

And, on some level, take pride in the fact that we

- he & I -

did everything we could to take care of her.

Access...

That's why I'm sitting here soooooooooo sleepy in my car... taught 2 microcomputer applications courses so far today .... but got an Access Queries tonight so couldn't pack it in and go home after - even though I REALLY REALLY REALLY want to....

I am too tired, stressed and just overall done to care about teaching night classes right now.... money is one thing, but honestly right now I just don't care.

D. is still hanging in there.... keeps spiking fevers and 'forgetting' how to drink though .... very hard to keep her hydrated... and even when she is not totally out of it, coughs and chokes on pretty much everything we give her...She's at the point now where she just detests having us change her or do anything, really ... have to change her position every 2 hours, and she'll moan or say "Owwwwwwwwwww!" ... sometimes before we even really DO anything. Its distressing for all of us... but of course, it has to be done... getting so that it's a 2 person job just to turn her.

Spoke to R today though - new case manager called and is encouraging us to take advantage of the additional resources that are available to us.... i.e. 40 hours of home care (we've been running on 18/week for several years now), plus the nursing care, plus ...whatever.... I am under orders to figure out what i want to do with them but honestly right now I just can't think to work out what the best schedule will be for them.... have to have a plan for them before I leave for work tomorrow (at 7) ... guess I'll have to sort that out when I get home.

Everyone keeps going on about the need to 'relieve my stress' .... truth is that I find it a lot less stressful to be at home seeing to her right now than i do to be at school trying to concentrate. It's somewhat better now that I've covered off V ... got PSWs on the evenings I work late...and they are great...don't have to worry about the care she's receiving when I'm not there... but still... my concentration is shot and I can read and study all I want to - it seems as though nothing much is sticking in my brain. It is very frustrating .... and I have a paper due on Tuesday ...and giving a seminar next Friday and... and... and....

Im tired.

A good morning...

So far anyway.... yesterday was not so good - couldn't get anything much into her as she had a fever ... not as high as it has been at times, but high enough to knock her out. The only way we could get any liquids at all into her was using a straw as a dropper - and can't do too much of that either, when she's like that, as she's inclined to choke .. or just let it run out of her mouth.

Her doctor came to see her as promised. Didn't call first, just showed up at 2 - fortunately we hadn't left for our 3 hours of freedom yet... R. actually had his coat and boots on to go down to the store when the doc pulled in. Nothing much to offer - said we could give her antibiotics in case there is a uti - but 'he wouldn't' Comfortable and pain-free and let her go is the consensus of everyone involved with her care.

We've been moved from the department we were under re: home services to 'medically complicated' or something like that... new case manager and a lot more resources available. They've offered additional hours of home care and nursing - can have someone sit with her during the night so that we can sleep better if we want. Talked about it, but not so thrilled about the idea, at least at this point. It will help to have 7 days a week of home care though - Sunday's get pretty long without a break.

Anyway, now that she's drank her juice and eaten I'm going back to bed.

Well. THAT! was not fun!

Just came back in from shovelling the crap from the end of the garage driveway so that I will be able to get the car out in the event that they don't close the college...which they probably won't do until lunch time at the earliest because if they don't at least open in the a.m. they get less money. If they wait until later in the day, there is no impact on what comes in - which means those of us who teach earlier in the morning have little hope of being spared the drive.

Anyway - R. said to wake him up and he'd shovel for me, but I so did not want to do that. So I've been out and done that, and now that I've almost got my breath back, I'm going to torment the old lady for a bit (change and a roll; try to get some food, meds, juice into her; all that fun stuff) and then I will reload the college's website again and hope that they've given me a break - but knowing they won't!

Only 1 class this morning, and short this week - only doing one chapter, then giving them their assignment and letting them go ~work on it~

And another...

So very very tired today.

Lousy sleep last nght. thought I'd have a nap this aft, but no such luck - R wanted to go into town.

D drinking well today but learning to detest the changing and turning and fussing stuff... stiffens up and fights - it's nasty ...I detest stressing her out... but it is necessary.

Ended up sitting and holding her hand for an hour or so tonight... boring as hell, but not much else to do ...she was agitated and unhappy ...gave her a Respiridol though, so sleeping now... hopefully that will take the edge of the next change and roll.

An Update

D. was much better yesterday .... no fever, drinking and eating lots.... today, not so good. Skin is breaking down; fever spiked again, etc etc.... keep getting told "a week or two"

Doctor is making a house call sometime "before Friday"

Hopefully she'll keep breathing til then... but we're not counting on it

Yesterday, we had our first visit from home nursing care.

She was quite clear about ma's chances of recovery - no big surprises, but having some one else tell us certainly made the prospect of losing her in the near future more real. A week, maybe two, she said.

So - we're coping. Continuing to try to get food and fluids into her. Trying to prevent her skin from breaking down. Hoping that everyone is wrong and that - now that her fever seems to have broken and she has occassional waking periods - she might recover (she's proven the experts wrong before)

We're focused, my partner and I, on caring for her.

I wish the rest of the world would grab a clue!

It snowed last night. So this morning, before too much else, hubby had to go outside and clear the driveways.

And then one of our tenants called - my furnace is out, fix it now.

I was rather snotty to him. Suggested that he might perhaps at least give me time to finish what I was doing - and he whined some more and was demanding - so I told him what I was actually in the middle of doing when he called. I suspect he would rather not have known. Serves him right!

So - I have changed and fed and turned and got things ready for his breakfast which he may or may not actually have time to eat....while he has cleared the snow and gone to check the furnace and find our furnace guy's new phone number

Today I need to read Dante's Paradiso, and finish preparing for a seminar I am to give on Tuesday, and plan my lesson for tomorrow night's class, oh - and I think I have a quiz in Poetry tomorrow ... will have to study for that some time because honestly, right now, I can't remember a blessed thing that we have discussed in that class to date. Oh, and I have to send the notes out from Friday's class, and write a proposal, and my paperwork re: next year is going to be late if I don't get it filled out soon and and and and ....

Life keeps on going...even when ...

Customer Service @ Shopper's Drug Mart

So.... time to change to a new pharmacy, I guess.

I realize that my tolerance for things that waste my time is a ~little~ on the low side... I get very little time when I can run errands... and I really detest it when people waste it for me...
but I don't think that it's all me.

Last month when I went to pick up a Rx for my maInLaw, they would only give me one month supply for that particular one....all the others, they fill 4 or 6 months worth all at once ... no problem. But for some unknown reason they refuse to do so with her nitro patch. So - I take the one month supply (and pay the same dispensing fee as I would have for a 4/6 month supply) - reluctantly.

Before I went back this month though, we arranged for the doctor's office to call in a new Rx for a 4 month supply. No problem, they called and told them that they could fill them all at once (so that we don't have to pay the dispensing fee 6 times!)

Went in today to pick them up and #1, they hadn't bothered to fill it, and #2, they wanted to only give me one month's worth again. I argued, and eventually they agreed to do 3 months....
That took 10 minutes (2 different people)

fine - how long?

"10 or 15 minutes"

So ... I have an errand I can run in the same mall ... no problem. Gone for about 15 minutes ...come back, they're not ready.

A half an hour later, they are still not ready.

I ask a young man behind the counter to check what's up with them.
No problem, he'll do that for me.

About 10 minutes later, he happens to notice that I am now standing at the counter with my arms crossed and I'm sure obviously displeased. He has not yet asked - oops, sorry! I forgot.

Uh huh.

Goes to check on the Rx.

Oh - they haven't got to it yet. It'll be "a bit" yet.

So.... not only have they wasted my found hour today, but now I will have to go back tomorrow to actually pick it up.

Does he apologize? Does she - the twit that told me 15 minutes in the first place - apologize?

I say "I will be back tomorrow; thanks for wasting my time!"

Their response? both of them - in unison.

"You're welcome."

A conditioned response I'm sure - customer says thank you, you say you're welcome.

I suspect that that is the full extent of the customer service training they get at Shopper's Drug Mart!

So tired...

6 hours of teaching down, 3 more to go ... very small class tonight, if last week was any indication.... but demanding none the less... and I am so very tired I really really really just want it to be over so that I can go home.

I will be so glad when my classes are over tomorrow ....got papers to write this weekend... and a seminar to prepare for (giving it Tuesday a.m.) .... but computers are all caught up ...well, one that still needs a bit of my time, but that's doable.