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Livin On A Prayer

August 23, 2012

We could use a wee bit of prayer coming our way tonight. Queenie is having a rough day. We thought it was just lack of sleep and not using her bi-pap mask but we are getting some warning signs that this could be an exacerbation. I hope I’m wrong and this is nothing but, just in case…..

Please God, help our Queenie be well. Please hold her and keep her safe. Amen.


‘Cuz You Gotta Have Friends ….

August 19, 2012

Yesterday was a pretty good day here in Queenieville. We were lucky to have an aide yesterday until about 2 pm (and we have her again today, too, which is a blessing!) and that enabled me to get all of my weekend “stuff” pretty much done fairly quickly. Usually on the weekends I try to cram in the shopping, cleaning, laundry, etc, into the day as I can. Some weekends are better than others, though, depending on how Queenie’s feeling and the things she needs. It was wonderful yesterday to be able to do all of MY stuff without worrying about HER stuff. After Lee (her aide) left, we were able to spend some time outside since for once it wasn’t super hot.

While we were out there, 2 of our neighbors came over for a visit. They hadn’t seen Queenie in MONTHS and it was so wonderful of them to come over. She loved the visit and loved the friendship, which is something she’s been missing a lot. Sometimes, it’s easy to focus on the negative things (her lack of sleep, struggles with pain, etc) that I lose sight of the positive things … I didn’t realize how much that one hour visit from some lovely friends could make a difference to her and to me. No, she didn’t get the sleep she needed last night and she still has pain, but today we both seem to have a bit of a better, more positive, attitude. Friendship is a powerful positive thing – thank you so very much, Michelle and Jane, for making our day better. Hope we can see more of each other!!

Felling Hot Hot Hot!

August 5, 2012

I could do without the summer, I really could. I’m one of those people I think that would be happy in the far Canadian North or Alaska .. Queenie, not so much. She was always a summer girl, even when we were younger. She was the one who was always out running in the heat of the day while I was the one under a shady tree with a book. MS, of course, makes the summertime, especially here in SE Pennsylvania, that much more difficult to handle (although truth be told, I think most everywhere in North America is having a heat wave right now. My cousin lives in Alberta Canada and they’ve been sweltering there, too).

Because of the heat, Queenie’s been spending most of the time indoors with the fan and AC running (next summer, though, we are investing in an AC unit that has a remote. With her temp fluctuations, she’s dependent on us to change the AC temp, which can get pretty old, pretty fast. We’re waiting for end of summer sales). Last week, though, she spent some outside time in the evening on a day when it was cooler and I know that made her happy. I’m hoping she can make that a regular part of her routine.

Since my last blog post, we’ve had another bathroom renovation, this time opening up the room so Queenie can turn around in her wheelchair without hitting something as well as making the shower completely barrier free.

We were fortunate that the PA Independence Waiver Program paid for this renovation because there was no way we could have afforded this ourselves. It’s been a HUGE improvement for her and for us since she can now shower safely in a secure environment.

The Waiver Program has also been a huge help to us with Attendant Care. Queenie now has a day time aide named Cathy who is with her from 9-5 while I’m at work. In the evenings from 7-12, Shannon is here. These two amazing ladies have been more help than they realize. In addition to taking on the bulk of the physical help, they give Queenie much needed companionship. We found out the hard way that many people can’t cope with disabilities and most of her friends have vanished. A tough pill to swallow especially for someone who is very social like Queenie. She had two very close girlfriends that she did everything with. She last heard from them about 18 months ago…not even a Christmas card since then. We have become her social network (well, us and Texas Hold Em on Facebook!) and she definitely needs someone other than us. Cathy and Shannon have really helped tremendously there and we are very grateful for it.

We are still struggling with routines, especially when it comes to sleep. Since I work a day job, I have my own regular bedtime … Queenie doesn’t have a job so it makes it much more difficult for her to find and stick to a regular bedtime. It’s led to a lot of frustration for all of us since she tends to fall asleep doing pretty much everything. More than once we’ve discovered her slumped over in the bathroom, fast asleep, inches from falling over and it’s terrified us. Once we wake her up, she is disoriented and argues that she wasn’t sleeping, she was only doing x, y or z … because she doesn’t remember falling asleep since she’s so tired. It’s a vicious circle and one that’s really hard to stop. We don’t want to insist on her doing things because she’s an adult and not a child but at the same time we want her to be safe and be able to have a full productive life. She’s had sleep studies and has a bi pap machine to help with her apnea. It’s a fantastic tool but only works when she wears it. All of her doctors, nurse practitioners and aides have told her ad nauseum what can happen without proper sleep but it’s not sinking in, I’m afraid. It’s a tough pill for us to swallow but we can’t make her do what she doesn’t want to do. Even as I write this, she’s falling asleep in her chair while trying to make me her shopping list. *sigh*

On the plus side of things, we found out that Queenie has additional hours of attendant care we didn’t know she had until recently so we are working on getting aides for the weekend, too. This could take a little longer since what would work best for Queenie is help on Saturday and Sunday nights and not many people want to work those hours. The agency that provides her aides during the week has been great so I feel confident they’ll find us someone. Thankfully, the weekends are downtime not just for us but for Queenie since she has no doctor visits on the weekends and can veg out like we do.

For now, we’re just keeping on, keeping on … putting one foot in front of the other, getting through each day as best we can.

Reflections on Mom

May 12, 2012

Mom became a nurse back in the fifties, when things were much different than they are now. There were no computers, nothing to monitor vitals constantly, uniforms were stiff and uncomfortable (there were no Crocs back then!) and Head Nurses were bears (ok, I think that part might be the same!). All that being said, she loved that old fashioned hands on nursing that she started with back in Nursing School. As the field changed and evolved, she had a harder and harder time with it .. A lot, I’m sure had to do with technology and Mom’s age, but I think some of it had to do with the lack of human contact. She also worked in ICU and there was a lot of high stress fast pace that just didn’t allow for the lingering type of nursing that Mom loved.

When Mom retired she just couldn’t stay away from it and so volunteered at a retirement home for nuns (yes, I said nuns. Did I mention Mom was hardcore Catholic? I’m totally getting into Heaven on her ticket!). She loved being there but more than that, the Sisters adored having her there. She was such an integral part of their community that they allowed us to have her funeral there. The entire place turned out for it and there wasn’t a dry eye in the Chapel when they all sang the Namaste Song.

Mom was, in her heart and soul, a Caregiver. She lived and breathed Galatians 6:2 “Bear ye one another’s burdens, and so fulfill the law of Christ”. The more I do this caregiving thing, the more I remember how Mom did it …joyfully and with purpose of thought. I struggle with that sometimes, as I’m sure all caregivers do … I wish I could be more like Mom more often. I do my best to put myself in Queenie’s place but sometimes it’s hard to do. I am trying, though.

Thanks, Mommy, for showing us what Caregiving is truly about. Happy Mother’s Day. We miss you immensely.



May 4, 2012

So much has gone on in the months and months it’s been since I’ve updated. Some of them good, some not so good but all of them have had impact not just for Queenie but for us, too.

1. Queenie and her neuro decided Cytoxan wasn’t doing anything for disease progression. The MS marched along as it does, leaving Queenie nauseous and exhausted a lot of the time. For now, monthly methyl prednisone infusions seem to help so we are sticking with that for now.

2. Her power wheelchair is on the fritz yet AGAIN. This time the motor that was just installed went defective within days and the company doing repairs doesn’t seem to understand the urgency to just ORDER THE DAMN PART. The Service Manager and I have been having some heated chats and I think he sees things my way now. Good thoughts for a quick repair would be much appreciated.

3. Our little old girl dog, Sava, crossed the Rainbow Bridge a little more than a week ago. That was harder than we realized it was going to be. She was 17 so it wasn’t unexpected but still….just so hard.

4. Queenie now has a (mostly) full time aide. Kathy is our angel and saving grace. Not only does she give her fantastic care (and it goes without saving she’s solely responsible for me getting a lot more sleep now!) but she also gives Queenie some much needed companionship. It saddens us to know that Queenie’s friends have pretty much abandoned her, with not even so much as a Christmas card. Kathy and Queenie have “clicked” and we are eternally grateful for her.

5. Queenie’s approval in the PA Independence Waiver program has not only enabled us to have Kathy but also to get the bathroom modified yet again. We found out after our last construction project that just because the contractor says something is ADA compliant doesn’t mean it will work. We’ve been working with United Disability Services to come up with a plan for the bathroom that will give her the space AND safety that she needs. Demolition begins this Monday…. Ahhh, the sound of sledgehammers and circular saws, the taste of drywall dust in my nose, the fact that we won’t have a working bathroom for about two weeks …well, all of it will be worth it. I hope.

That’s the update for now…more to come….life is ALWAYS full of changes!

Queenie and Domino say hello to all…


The New Normal

November 15, 2011

A few weeks ago, I was watching an episode of “Sons of Anarchy” (if you’re not watching this show, you really should. Lots of violence, drugs, sex and Charlie Hunnam flexing and being all bad boy outlaw. Writing is fantastic as is the acting…the one show I never miss) – one line really struck me, really hit home for us. Tara, after finding out about a death threat, says to Gemma, “Normal people call the authorities when their lives are threatened” and Gemma says:

“You don’t have a normal life baby- you have this one”.

And that’s where we are today …living life with a new normal. Or trying to anyway.

Every day brings its own set of challenges for Queenie and, by extension, for us, too. Watching her struggle is hard for us, since we want to FIX IT, dammit! Unfortunately, there is no fixing this one so we have no choice but to make it part of our every day routine. Lymphadema has once again reared it’s ugly head and it’s really made our Queenie miserable. Luckily, the therapist agrees that the pattern of liners and bandages is one that’s not working. Queenie can’t manage it well on her own and it’s a big time suck. On a good day it takes us an hour just to do her legs and feet and it’s exhausting for both of us. She is waiting on a lymphadema pump/inflatable pant and we’re keeping our fingers crossed that this will work well.

We are also in a struggle with pain. Since coming home, she’s had quite a lot of it, especially in her hands and arms. We’re not sure why but for now, her neuro is making some drug changes and adding a Fentanyl patch. I have my own ideas about pain management but we’ll see how the Fentanyl takes care of things.

But the biggest struggle I think for Queenie right now is the one going on in her head … she has a lot of thinking going on about the kind of care she wants/needs as well as some tough decisions to make for the future. It’s a scary thing to be Queenie right now and I don’t envy the things she’s got to think about. I suppose these are things all of us should think AND talk about but it’s far easier to do that when one isn’t looking down the barrel of a chronic illness like MS.

There is, however, GOOD stuff going on. Queenie’s been approved for our local paratransit service so can travel within the county in the comfort of her chair. She can go to some doctor’s appointments, go shopping, get her hair done …all without having to depend on one of us to go along and manage a manual wheelchair. For now she’s limited to our county but we’re hoping that will change in the near future. Let’s hear it for our Tax Dollars at work!

This Thursday will mark exactly 2 months since Queenie came home to us.  A lot has changed, some good, some bad but she is HOME. We still have lots of things we’d like to do to make things easier for her & us here at home but that will come in time. Big Daddy & I will be going away this weekend to enjoy some fishing (him) & knitting (me) and Queenie will be able to enjoy the house without us for awhile (my cousin from NY is coming to keep her company & help with the furbabies so she won’t be totally alone). Plus, she’ll be able to do some fun things, too…get her nails done, have a nice dinner out…it will be a nice break for all of us I think. We’ll all come back relaxed & refreshed and ready to resume our Newly Normal Lives.

When Queenie Comes Marching Home Again …

September 15, 2011

It’s been a long time between posts  – I’ve no excuse other than we’ve been busy here with the business of living. We’ve had quite a bit to busy us since July 29th …lots of visits to see Queenie, coordinating doctor’s appointments & home visits, organizing MOUNTAINS of paperwork …not to mention the daily grind of working & keeping the home fires burning even while nasty things like Hurricane Irene & horrible flooding tried to keep us down. Also somewhere in there we’ve welcomed a new baby into our family and are waiting on the birth of another – as an old friend would say “we got a lot goin’ on.”

This Saturday will mark the end of Queenie’s recent MS ordeal  and will the be beginning of a new life for her here at home. While we’re thrilled she’s coming home, we’re tempering our excitement with a good dose of reality – this will be different. She has new needs and different ways to handle the old needs. We’ll have more medical equipment and will need to find new ways to cope with that. Every day will be a continuing lesson and we need to keep our eyes & hearts open to what those lessons will be.

Today’s lesson I think is is gratitude … we need to be mindful & grateful for the people in our lives while they’re here – life is short. I was reminded of that today while eating my lunch. A co-worker, H, asked about Queenie (as she always does) and we chatted a bit about the tribulations of being in a nursing home for months. As she left the lunch room H said “Queenie’s lucky to have you” and my reply was “if the situation were reversed Queenie’d do the same thing for me. We’re lucky to have each other”. H’s parting words were “your mother raised you girls right”. A few hours later, I got the email telling me Queenie’s discharge date would be this Saturday and the first person I wanted to give the good news to was Mom. She would have been so happy and would have been planning ways to get streamers all over the house (I’m not that nice – there will be NO STREAMERS. Maybe a steak dinner, though).Really miss her smile & joy on days like today and so grateful she made us the women we are today.

Saturday begins the next chapter in this MS journey…stay tuned for the continuing saga!