Rockin’ The Vote!

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.

Can’t Smile Without You

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.

Livin On A Prayer

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 ….

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!

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

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.

Ch-ch-ch-ch-Changes

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…