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Queenie Update

January 25, 2014

(Praying this post sticks…the last 2 didn’t…WordPress can suck it!)

It’s been a busy year since our last update. We have been busy with all kinds of things but mostly work and, as always, Tending the Queen. Lots has changed for our Queenie and, as a result, for us. Her disease has really progressed in the last year which has meant a greater need for care.

Last year at this time, she could still transfer with some help to bed, wheelchair, shower, bathroom. Today she cannot even stand and transfers now require 2 people (and, since Medicare in its infinite wisdom has declared having 2 paid aides on at once is against the rules, that makes 1 of the 2 people me. It’s been interesting, especially during the work week when I play the game “Let’s see how fast I can run home, transfer her, fly back to work and pray I don’t get pulled over for speeding”. It’s a fun game that becomes even more fun when it snows).

Last year at this time she was struggling with chronic UTI’s caused by her neurogenic bladder that were hell on her physically & mentally (this was when I learned that a really bad UTI can make you crazy. No, seriously it can make you hallucinate & everything). Straight cathing helped for a while but since her hands were becoming worse & worse, that didn’t work for long. She had a supra pubic catheter put in and that solved those issues but of course now catheter care is part of her medical routine.

Last year at this time, she was a little more “with it”, a little more cognizant of recent events. Now, not so much. We say an awful lot of “do you remember….” and many times the answer is a tearful no. It’s heartbreaking and frustrating.

Last year at this time, it was much safer for her to be here with us. Last year at this time, we could still all do “this”. But not long after New Years 2013, Peepette and I talked about how much longer we could continue to do “this” and the answer was “not anymore.” So we did the only thing we could do & applied for admission to the Raker Center. It took a few months & a LOT of paperwork, but we got in. And then promptly got put on a waiting list. In between all of this, we fought with Medicare (and lost) to get a new wheelchair, searched high & low for a sling that would help us transfer her from a reclining position to a seated position (still haven’t found one that Medicare will pay for) and, probably the most exhausting part, waged a daily battle with the agency providing our aides. Every single day I would call for an update on who was / wasn’t coming in, who could possibly, maybe come in and the worst….when nobody could. On those days, honestly, I cried. I’d work all day then come home and work my second job. It was & is frustrating & exhausting for all of us, especially for Queenie, who is used to a certain type of aide. I clearly am NOT that type.

A few weeks ago, I called the Raker Center and explained that transfers are getting scarier & scarier. I’d rather be in a dark cave covered in raw meat surround by wolves than transfer her into the shower, it was that scary. They agreed to move her to the more urgent admission list but that it could still take time. They told us to be prepared because if/when an opportunity arose, we’d need to move fast but again, be prepared to wait. So we did and in the interim, started making back up plans for other facilities (AKA nursing homes).

And this past Tuesday, the call came. We have an opportunity they said. Can you be here in 2 weeks? (Originally it was 5 days but thankfully, with doctor’s schedules it got bumped to 2 weeks). And so here we are…packing.

Queenie is nothing if not a collector of things. Jewelry, clothes, shoes, rubber bands (yes. I swear to God. Rubber bands)….she’s got it all. And so, we’ve got to go through it all. She’s having to make choices about what she’ll take and choosing is very tough for her, so we’re having to make those choices for her. She has an emotional attachment to things and tonight I realized why … because certain items make her remember certain things and she’s holding on to whatever she’s got left. And it’s hard to be the one to say “I’m sorry, Queenie, but there’s no room.” In many ways, it’s like packing your kid off for sleepaway camp for the first time & telling them they can’t take ALL of the stuffed animals. To us, it’s just stuff. To her, it’s her life.

All of that being said, we know we are making the right choice and Queenie knows, too. The Raker Center will be able to give her back the independence that living here has taken from her. They’ll have the ability, people & equipment to allow her to live safely and, more importantly, to socialize with people besides just us & her aides. People who knew Queenie before MS did it’s damage, would not recognize her today. She’s not the outspoken, happy, life loving Queenie she was 5 years ago. We are hoping she will get some of the back at the Raker Center. This feels like the end in so many ways, but I know it’s just the beginning, for us and for Queenie. Still, I’ll miss my sister. A lot.

So, on Tuesday, February 4th, around 8:00 AM, if you think of it, send Queenie some good thoughts. She & I will be ending one chapter and beginning a new one exactly the same way …. by riding a bus with my sister.

Love you my peep ….

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