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Reply by oldbat
15 Dec 2014, 6:31 PM

Hi all,

Just read a very interesting article, by a remarkable full-time care-giver, in today's Toronto Star.  "Taking Care of the Love of My Life" is in the Life/Entertainment on page E5.  The writer deserves a gold medal!  And she has some very inteesting things to say about the importance of maintaining a positive attitude, even while admitting that is not always easy!  Sound familiar? 

Hugs all round,

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Reply by oldbat
16 Dec 2014, 8:40 PM


Sometimes it's an accumulation of "little" things that can drive you right round the bend!  I usually sail (more or less!) through major crises, but today has been one "little" thing after another since 9 a.m.

9 a.m.:  Phoned Germany to clarify something essential on Karl's miniscule pension.  That one call necessitated calls to his home - repeated three times as the person I called doesn't respond to voice messages, for a doctor's certificate and the bank to set up an appointment for an authorization stamp. Got voice mail.

Call from Karl's home to mention that, because he has cellulitis, he can't have his (seriously delayed!) Botox shots in his paralyzed leg this week.  Got on Wheel Trans sites to cancel both our rides for Thursday.  Wheel trans web site refused to accept my cancellation.  Try again later.  Call to Karl's physiatrist to see if they can reschedule him for the shots.  Set for next week. Call to Karl to tell him the bad news about Botox.  He's been in so much pain for the past few that it took some time to calm him down.

11 a.m.  Called to cancel already-cancelled-once annual eye exam later today.  I am not popular!  Call to call to see if he was o.k, and tell him I'll come up for lunch on Thursday - if/when Wheel Trans will allow me to cancel the scheduled botox trip.   He's marginally mollified.  Tried again to cancel botox trip on Wheeltrans and rebook for lunch with Karl.  Site still not cooperating.

11:45 a.m.   Call from Karl's home:  they're scheduling an ultraound in hospital for him, so he can't have Botox next either - he's on stand-by!  Call to Karl's physiatrist to cancel next week's botox shots.  Not sure when to reschedule.  I've been pressuing them for months to have this done, and now cancellation after cancellation.  Not popular there either!

Noon:  Wouldn't normal people be eating now?  Nah!  Call from manager of Karl's home:  what should the doctor put in her letter re German pension?  Call from Karl's nurse, they're starting him on anti diuretics, when would be the best time to do that?  Duh!  Just give them to me.  Now have severe problem with water on the brain.  Another call from Karl's phsyiatrist's office:  can you please e-mail us the details of the cellulitis and a list of meds that he's on.  Also when he'll be having the ultrasound?  Another call from Karl's nurse:  the doctor would like you to buy some OTC pressure socks for Karl.  The prescription ones are too expensive.

1 p.m.  Call the pharmacist, explain about socks.  He wants to know what length, what pressure?  Call nurse to relay message.  Nurse says she'll call doctor to find out and get back to me.  Nurse is a saint.  Start writing email to Karl's physiatrist - call from my social worker:  are we still meeting tomorrow?  Yes, if I'm still alive.  Another try at Wheel Trans siter - still not co-operating.  Back to e-mail.  Bank called back, appointment confirmed for tomorrow.  There is a God!

During all this I discovered the water in the entire building had been shut-off  and I hadn't stock-piled.  Also some flowers a lovely friend sent me couldn't be delivered, because I couldn't hobble to the buzzer fast enough to let them in!  Life sucks again!

And so it continues.  It's after three, I'm still fielding and making calls and, with no lunch, am eyeing an unopened bottle of German riesling in the fridge.  When I returned from hospital I declared the apartment a "chocolate-free zone".  Was I out of my ******* mind?

Hope your days are going better than this! LOL


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Reply by KathCull_admin
18 Dec 2014, 3:42 AM

Dear, dear Oldbat

I am sorry you had such a terrible day – it must have been a relief when night came and you could crawl into bed. Doesn’t life seem like that sometimes – one hard thing follows another. It must be very hard for Karl to understand so many changes – especially as he has to depend on others to make the decisions and plans.  I hope today was better.  

I keep chocolate chips handy – they are very good mixed with pecans, dried cranberries and raisins and if I put them in a small dish I don’t feel as guilty. Of course they make good cookies too!

I am keeping you in my thoughts Oldbat.

Take care


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Reply by NatR
18 Dec 2014, 4:41 AM

Dear oldbat!

that was a day from hell.  The way you wrote it all out was really interesting to read...I don't want to say humorous but it definitely makes you wonder about some people's kids!

i think Katherine had a great idea about the chocolate chips, and firmly believe we should be able to either - have a drink, or eat chocolate in order to survive the insanity in this world!

Hats off to you for handling it with such grace  ;)
you are a treasure!!!

Things have to improve - hopefully.
hugs (handing you some chocolate through the monitor;) You deserve it!
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Reply by AdoptedSon
18 Dec 2014, 5:16 AM

Dear Old Bat

A CHOCOLATE FREE ZONE?   You do indeed need a rest, to even have contemplated such a thing, let alone actually create one.

To help you ease that moment of confusion, I have gotten you a nice triple layer black forest cake, and to help insure the thought never comes back, a 1/2 pound Reese Penaut Butter cup.

Alas, my poor monitor is on some denial kick, and refused to accept deliver. And as the cake either gets eaten or refrigerated, it would perish, so what else could I do but eat it?  You wouldn't want it to linger now would you?

As to the Penut Butter Cup, well, again thanks to that ornery monitor of mine, that is now up for immediate replacement, I had to insure it too, did not go to waste.  Besides one needs a proper dessert after indulging in a triple layer cake smothered in chocolate.

Hang in, you are tougher than you realize.  After all, only a true warrior could go without chocolate in the home.

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Reply by jorola
21 Dec 2014, 2:18 AM

Hoping you have had better day since the one from hell Oldbat.

Ian your funny and an amazing support to other on here!

Nat - were would we be without your encouragement.

Everyone have a happy and peaceful holiday.

Hugs and strength to alll and to all a good night

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Reply by Nouce
21 Dec 2014, 2:53 AM

I also think of you, and want to wish each one a peaceful night and a holiday time where the burdens do not outweigh the joys.

We had a long hard but good day. Pablo took a hard fall this morning while I was walking with him--he so loves to get outside even when it's cold (though probably not if you're from Saskatchewan where my mother grew up). But I can only find a scuffed knee so thankfully it wasn't worse.

He wanted to go to my godsons wedding (at a church right down the street from us). The young folks were so helpful getting him around in his wheelchair. But he got chilled so we rushed home and he's in bed. Hence the wish for a peaceful night.

How do In know when to just stay home because it's too hard or dangerous to take him out?

Anyhow, this was meant to send you all holiday warmth and care, not to complain!

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Reply by oldbat
21 Dec 2014, 3:26 AM

Dear all,

What a joy ot read your  supportive e-mails.  Kath, you never fail in making me feel so much better.  Ian, have you hogged ALL those goodies yet?   My monitor is currently going through withdrawal.  Nat, thank you for winkling out the (very black!) humour in that whine.  And Jorola, yes things have taken a turn for the better.

So, here's the story with Karl  I found out, quite by accident that he supposedly had cellulitis when his home called to notify me they were putting him on diuretics and scheduling a highly specialized deep vein scan, in hospital.  When I asked why, they said "cellulitis"  and he'd been on antibiotics for the last 10 days.  Never mentioned that to me.  And I'm supposed to agree to all his meds.  So I called the administrator and complained.  I'd been feeding him wine on the week-end!  Not a good mix with the ab's.  Next his day nurse called and apologized.  Mea culpa!  She is a WONDERFUL nurse.  Told me she didn't think he had cellulitis.  He'd been seen by two doctors, who couldn't agree on a diagnosis!  He'd also been seen by a TEAM of visiting nurses, who  didn't have a clue either.  So, up there I want.  Samantha (his nurse) showed me his leg, incredibly swollen around the ankle, and pointed out that there were bruises on the sole of his foot.  Definitely NOT cellulitis.  So they'd dosed him needlessly, and scared me equally needlessly.  Not amused!  Karl then "remembered" that during the week a volunteer at the Aphasia Institute, who was pushing his wheelchair, ran him hard into a wall.  And then abandoned him.  Sheesh!  Much candy ensued!

But yesterday was a good day.  Finally, finally, finallly after three **** years, got the documentation for his German pension sent off.  For three years they've been sending me multi-page forms, double-sided, all in Krautspeaki!  Phoning Germany didn't help.  E-mailing didn't help.  Neither did writing.  I made one last call this week, and got someone who could speak a bit of English and actually helped.  So I sailed off to meet with my counsellor in the afternoon, and then met a friend for supper.  A good time was had by all!  Dare I believe that there are glimmerings of an actual life in my future?!

And so to Christmas.  Karl's coming heare on the 24th., his Christmas, I'm going to him on the big day, and we'll have lunch with the large, loud, incredibly happy and kind Italian family, whose mother is on Karl's floor.  He's having Christmas with his family on the 23rd. and I DON'T HAVE TO GO!!!!  The divorce is final.  Yes!  I have, however, bought and am wrapping gifts for him to give them.  

I wish you all a wonderful, totally politically incorrect Christmas.  I'm hoping you spend loving, happy times with family and close friends and definitely over-indulge in all the goodies you're offered.

"God rest you, each and every one."


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Reply by NatR
21 Dec 2014, 5:50 AM

Happy Holidays to each of you, jorolla, nouce, oldbat  Xenia, Ian Kath and anyone I may have missed including .....

sometimes your notes are full of pain fatigue, or challenges -  but this week it's totally fitting to wish each other Merry Christmas, Happy Holidays, Happy Hannukah or whatever each of us celebrates:)

you are each amazing story tellers, encouragers, caregivers and so persistent in your efforts to advocate for those you love.

may you each find peace, love, support as you connect with loved ones friends and family.
may the coming New Year bring you all the health to continue supporting your loved ones 

speaking for myself I am grateful that you share your journey here.  It does help to write it out and get an answer from the group Members.  It's good to know we aren't alone

appreciation to Colleen Young our dedicated moderator and her able assistant Kath!
best wishes to each of you....
hope you each get something good from Santa...and hugs all round.
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Reply by Jimmie
21 Dec 2014, 1:32 PM

People who measure such things, tell me tonight is the longest night of the year.  Perhaps.  Others know such an event is not a fixed date on the calendar.
In any event, it is as good a night as any to light a candle in honour of all those living through the depths of darkness of whatever kind.  I shall do so in honour and celebration of each one of you 

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