Monday, November 17, 2008

Respite Woes

Wondering about my weekend?

Well, gee, thanks for asking. Actually I spent it at a respite conference.
The Nova Scotia Coalition on Respite and Family Health and Wellness include representatives from families, community and health organizations, government, and researchers...

Researchers at the IWK Health Center and Dalhousie University will carefully evaluate the process and outcomes of this endeavor. Our shared goal is to better understand the support pathways by which outcomes are optimized in these parents and caregivers. This proposed program of education and research is important for all of us who struggle to help these sons, daughters, and families. It is critical to educate parents and caregivers to develop meaningful respite solutions, supported by community- based evidence.
[Written by Paula Hutchinson, just to give credit where it's due.]
Which turned out to be good respite.

There are five workshops to be held throughout the province. This one was in Yarmouth (about a 3 hr drive away) and there will be one more local to me in two weeks. But I was asked to speak on a parent panel at both sessions. So off I went.

A good friend has family in Yarmouth so we went together. Ate well at the workshop, met a lot of new people, made new contacts and heard reiterated what so many of us with children with high needs are only too aware. But hopefully something good will come out of it.

But I discovered the best part was the actual respite I enjoyed on the weekend. After the workshop we went my friend's sister. The sister and her husband were on their way out to supper so we crashed. Read, took a nap, read some more, made some tea and chatted some more. Later, another sister brought us over some supper (since we were much too lazy to consider going out to get some) and after that a group of us played Scramble. Talked. Ate popcorn. Had a beer.

Pretty tame, no?

But, boy, it felt good.

Up until 2:00, slept in until 11:00, then asked our hosts if they would care to join us for brunch. It seemed the least I could do considering we had planned on staying with a different sister (which hadn't worked out) and had literally crashed on their doorstep. So off we went to a nice brunch buffet. Where we lingered and talked some more.

All in all, it was a nice weekend. And great respite.

Oh yeah, the 'Woes' part ... I had to come home again. Which somehow the thought of managed to induce a headache on the drive home.


The welcome was nice. The major computer glitch where it appeared that everything (and I mean everything including all 600 saved emails, all my documents, my internet preferences and half of my programs) had been wiped off the computer. Finally got that straightened out. They won't admit it but I am pretty sure an error which occurred when Windows Live One attempted to install an update was the culprit. Thank God for system restore!

Went up to see Mom last night. It has been a real rough couple of weeks for her. We actually thought we were going to lose her last Sunday. But she is a tough lady. Sometimes I have to wonder if she is a little too tough.

Apparently she had been better on Saturday when HWWLTBO and the kids had went to see her, actually talking, communicating. Yesterday she was totally unresponsive. Eyes open, but no real eye contact unless you placed yourself squarely in the middle of her field of vision. She couldn't move her head. Couldn't talk. Although it did seem a few times that she was trying to say something but couldn't. The nurses told me she had been like that all day. Which meant that they couldn't even try to feed her or give her anything to drink because in that condition, she could aspirate.

It was heart-breaking. And there's not a damn thing I can do about it. That was the woes part.

But the weekend was had been good. So we got that.


Punkys Dilemma said...

{{{{{ hugs }}}}}

I'm so sorry about your mom. It's so difficult having to deal with sickness in the family. That rollercoaster ride can drive you batty, I know.

Your respite sounds refreshing! I'm glad you were able to get away if for just a minute.

Take care M.

Kris, in New England said...

Be sure that in all of this, you take care of - you. You certainly have more than someone's fair share on your plate; I bet you feel like you've got your fair share and that of about a hundred other people.

But in the midst of all that, be sure you pay attention to yourself in any way you can.

You need it more than everyone else.