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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.

2 Comments leave one →
  1. fionasfight permalink
    August 18, 2012 10:28 AM

    I do very much feel for you and queenie, as I have as of late been dosing off at the computer, sitting on the couch while I should be wide awake. Very frustrating from our side too! Even if we do not want to admit it! Congrats on the help coming in, and the bathroom. Wonderful things happening.

  2. August 14, 2012 7:55 AM

    “We found out the hard way that many people can’t cope with disabilities and most of her friends have vanished” this is the unspoken truth of homecare in the US. I wish you all the best of possible times. However you do it you are blessed that you and hubby can get away for vacations, trips, etc.
    Caregivingly Yours, Patrick

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