Friday, March 09, 2012

Finding respite from the storms

It’s Linda here. Beth has given me permission to write a blog asking for your help. If you’ve been reading lately you’ll know that it has been a chaotic few weeks – family, care giving and VIHA just a few of the major issues being faced. It can all be quite soul destroying. The problem with problems is that there is no requirement for them to space themselves out. My Doctor today said that I have 'burnout' (most likely from work as well as spending 20 hours a week or more on applications, shortlist tasks and interviews). Beth has also been depressed for some time, and suffering 'Burnout' as well as pain that literally stops her breathing, or shakes her heart. We both need a breath.

Beth hasn’t had a vacation since last spring when we went to Sakuracon, nearly a year ago, and was ill in bed for 2 out of 4 days of that. She has had one weekend at Cheryl’s house about 5 months ago so we could see the salmon jumping. That’s it for a whole year. For the other 300+ days she has been stuck in our apartment where phones ring, emotional bombs are dropped through the mail slot and the clutter of life surrounds her. The past several weeks, she has tried to remain strong while daily threatened by loss of medical assistance from several agencies and individuals, as well as the stress of lawsuits, threats and emotional 'bombs' almost on a daily basis. Yet, she continues to do all she can to stay alive, and carry as much of the daily caregiving duties as possible so that I can apply, apply, apply, see my doctor and sometimes just be found staring into space.

We, Cheryl and I, would like Beth to have a respite for a few days, which will also give me a respite. Victoria is hosting a 'home town deals' for part of this week and next week. I have tentatively reserved Beth a room for 3 nights (Wednesday, Thursday and Friday) and will arrange for home care to come visit at the hotel to make sure she has what she needs. The hotel has a fridge, and individual climate control. Beth had been scheduled for a respite in Oct 2011, but they refused to allow climate control of her room, or privacy, and saw it as a good time to order a series of tests on her. Elizabeth didn't see day after day of tests in the hospital while going into heat stroke as a 'rest' or 'respite'. Plus, we were to be charged about $40 a day and they would only book for a week, which we could not afford. It was a case of either having tires on the van or her going on respite. She cancelled the respite.

We are still on a budget that Beth says 'covers 92% of our costs.' There is a strong hope that I will find a new job soon, but that hasn't happened in the last 8 months. If you would like to contribute towards the cost, please click on the ‘donate’ button on my
blog. It’s 3:30am and I don’t have the brain power to explain more or figure out a more direct way tonight.

6 comments:

Arindam said...

Would you please change background color. Very difficult to read

Anonymous said...

donation and hugs to you both..
hang in there
Jill

JaneB said...

Virtual hugs and good wishes to you both.

bonfun said...

i'm so sorry to hear you are suffering ! Im 41 and in limbo .. nodiagnosis other than dysautonomia, I have alot of other problems too,, balance and yes, like you muscle pains and cramping . They have not called your disease by name ?? My whole story. There are a few of us "young ones" with similar symptoms.. that is still undiagnosed... I would like to know your whole story... is :mymsachronicles.blogspot

Hugs and prayers, a. god bless you Linda.

Neil said...

Hi Linda:

I'll see if the credit card will withstand even a small amount to help you. I'm close to maxed out, and need to exercise it some more this weekend for something I must purchase online, but I'll do what I can.

It's hard to believe that someone as educated and talented as you can't find a job. I realize that jobs aren't thick on the ground any more, but there must be SOMEONE out there who needs your skills!

Prayers, love and zen hugs to both of you,
Neil

Linda McClung said...

Just a big thank you to those who generously donated to Beth's respite. We were able to book Beth into the hotel for 3 nights.

We had technical difficulties with the hotel room and problems with unfamiliar care workers which left Beth is much worse shape than when she arrived. Bummer.

We have come up with some lessons learned so hopefully she will have a better respite next time.