They say it takes 21 days to form new habits. I don’t know if that’s entirely true but 21 days is a span of time to get more used to something.
It’s been 21 days since Queenie “moved on up to the East Side” and we’ve all been working on new stuff. The house is oddly quiet. There’s not a tv running or medical equipment humming or a washing machine going. We are all settling in to different routines every day (which seem to recently include shoveling a metric ton of SNOW!) and so is Queenie. Things are different for her for sure and she’s having her fair but of struggling. For the first time in her life one of us isn’t with her and that’s hard to get used to.
On the plus side , we are seeing tiny physical improvements. She was able to stand with a lot of assistance and our hope is that will continue. It won’t happen all the time but in 21 days she was able to do at the Raker Center what she couldn’t do at home for the last year. One for the win column.
On a sad note, we had to make the heart breaking decision to put Domino to sleep. For those not in the know, Domino was Queenie’s Border Collie and crazy nutty dopey BFF. He’d developed a splenic tumor and had cirrhosis of the liver from seizure meds he was on. He wasn’t going to get better so, we said good bye to him last night. Queenie couldn’t be there in person but she was on the phone the entire time. She used to sing to him and he would love when she did so she sang to him one last time as he nodded off to sleep.
So we are all settling in as best we can. Queenie is struggling some still but she will get through it. She’s a Meyer Girl and that’s how we roll.
And so, we are off on our final bus ride together. We made it out of the house and onto the bus with only one small breakdown so I think we’ll get through this day ok. The roads are slick and icy but our bus driver is doing just great. We are smiling this morning and they’re not fake…the adventure begins!!
She’s packed. Well, mostly. And ready to go. Mostly. I’m ready to go. Mostly.
It’s been a roller coaster these last few days. The last minute packing and movement has made the pets a little weird and Queenie’s dog, Domino, seems to know something is up. I think he knows. He’s been distancing himself from her more and more the last few days and, as hard as that is to see, I think it’s a good thing. When she doesn’t see him, she focuses on other things, almost in a “Out of Sight, Out of Mind” way. Not that she’s forgotten about him, but in a way she has. I think it might make things easier tomorrow. I hope, anyway.
The last few days have been bittersweet. Finding weird stuff in weird places (I keep finding Cheerios everywhere), laughing and being silly but getting sad, too. We’ve had to tell her a few times that she’s moving because she keeps forgetting and then the news is all new to her again. I think that’s the hardest part because it feels like I’m breaking her heart again and again. Yesterday, as I was packing her vanity she said “why are you putting all that away?” and I could just tell she didn’t know. I lost it. I just couldn’t tell her again so I punked out and ran into Peepettte’s room and begged her to do it. It was just as hard on her again. But this time, she hasn’t forgotten. I think this time it stuck. And I think she’s making her peace with it, finally. I think she’s realizing that while this is a permanent move for her, it’s not a final forever thing and that she WILL have a life away from us.
Some neighbors stopped by tonight to say goodbye which she really really needed. She was tired and stressed so they couldn’t visit as long as they liked but it was worth it for her to see them and for them to say “We’ll come visit!” and know that they mean it. This disease has really isolated her (and us) so it was just so great to see these two beautiful ladies. We both needed it.
It’s been a tiring day for all of us. The snow storm knocked us for a loop since both our morning and evening aides called off because of the weather. The agency, of course, couldn’t get a replacement so, once again…well, let’s just say they’ll be getting an invoice from me. I’m so not kidding about that. I went to work in the middle of a snowstorm then had to come home in the same snowstorm less than two hours later because they couldn’t get their crap together.
But finally, we are all packed. The last load of laundry is in the washing machine and Queenie is in bed, trying to get comfortable. I’m about to pick up my knitting and try to relax (my friend Sandie once said “how do people who don’t knit cope with stuff?” and I, thankfully, am not one of those people) even if it’s just a few stitches. Tomorrow…we ride!
I guess everyone has those moments in their lives where they take a look around and say “how the %#+€ did I get HERE?” I think all of us are doing a little bit of that these last few days, especially as things are packed, other things are thrown away and things you thought were long gone somehow come to the surface. Yesterday, Queenie came rolling out of her room with a picture in her hand saying look what I found. It was my kindergarten school picture.
I was about 6, with my hair curled in ponytails with pink ribbons, in a pink dress that I remember so clearly. It hade a white plastic buckle on the patent leather and a pleated skirt. I LOVED that skirt. It was the kind that when you twirled, would bell out and you’d feel like you were a princess, floating on air. I remember my Mom doing my hair that day, feeling special, pretty and just oh so very happy. It helps that I was 6 ….at 6 it’s kind of hard to be unhappy in a pink twirly dress with ponytails tied with pink ribbon.
I remember that girl. She read Nancy Drew books (yup, in kindergarten. They let me sit with the 1st grade when they found out I read them). She loved dolls. She was Mom’s Helper. She was The Big Sister. Aside from the dolls (replace that with knitting), not much has changed. I still love to read and I’m still The Big Sister. But things will change over the next few days. I’ll still be The Big Sister but it’ll be different for all of us, not just Queenie. It’ll take some getting used to for all of us.
So, here I am, just watching the sun come up, gearing up for the final weekend. I have a nice dinner planned so we can enjoy one nice Sunday dinner together. I’ve got my sneakers on and my feet on the ground and getting ready to have some coffee before I head into Queenie’s room (our Sunday morning aide is sick and they couldn’t find a replacement so I’m “on duty” until 4). For a minute, before I head in, I’m going to remember that girl in the pink dress. And maybe I’ll twirl a little bit, just to be 6 again.
(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 ….
Unless you’ve been living under a rock, it’s hard not to remember that today is Election Day here in the US, and a Presidential one at that. We take the right to vote pretty seriously here in our house and tonight was no exception, even for Queenie. After dinner, she and her night nurse, L, took a mile “stroll” down to our polling center and voted. I’m so proud that she didn’t let her disability become an excuse not to make her vote count.
Hope all of you in the US today didn’t make excuses either and made your voice heard. It’s not just our right as American citizens…it’s our duty.
In the day to day grind, especially as a caregiver, it’s so easy to forget how to have fun and laugh. It’s easy to get caught up in the routine of “take your pills, do you want the AC on, are your shoes tight enough” that when the fun moments happen, we sometimes tuck them in the back of our minds and forget them for a bit until they jump up and bite us and say “hey, you, smile a little wouldja?”
A few weeks ago, a work friend of mine and Queenie’s came for a surprise visit and spent the day with us. We had a fantastic day doing nothing more than talking. Queenie was having a bit of a rough day between fatigue and trouble cathing but she was still able to spend a few hours catching up. I’d forgotten how much that day meant to both of us until I ran across this picture in my phone. There’s the Queenie I know and love…putting a schmear of cream cheese on someone’s nose.
Thanks for the day, Steff…it meant more than you know. For a few hours that Sunday I had my sister back.