I Need Help with This

Please call the Governor Ducey's Office at Phoenix: 602.542.4331 or

Tucson: 520.628.6580 or

write to:

Governor Ducey

1700 West Washington Street

Phoenix, Arizona 85007

Arizona is on the verge of losing respite services for the disabled because of the increase in minimum wage. This was a November ballot issue that passed. 

Please ask our governor to increase funding or come up with a plan so families do not lose all their respite hours. Currently families receive a maximum of 600 hours of respite per year. Not all families receive the maximum number of hours. There is already one possible plan on his desk.

As a parent of a disabled child I can tell you that this is a vital help to all families. 25 years ago when all states cut back or eliminated the institutions for the disabled they promised the families that support services would always be available. If the funding issue is not resolved my greatest fear is that more parents will opt out of keeping their special needs children and adults at home because they will be just too burnt out to provide optimal care for their loved ones.

There are currently not enough beds to meet the states current needs. This care is also more costly than respite care. Agencies currently receive enough funding to cover about $9.00 per hour plus overhead. Without a change in funding for a $10.00 per hour wage, most would lose at least 25 cents per hour of respite care provided. Since most non-profits and for profit agencies cannot afford to lose money, they will eliminate respite services. This works out to a maximum $6,000, plus overhead, per special needs child or adult. Also being realistic it will cost at least $3,000 per month for residential care or at least $36,000 per year per special needs person not at home with family.

So it comes down to how much the governor wants to spend or save. Is it worth saving $30,000 per special needs person by increasing funding to $10.00 per hour plus overhead? Let the governor know how you feel. 

I can Not Unwind

Eric is feeling better and sleeping, he will go to program tomorrow. I on the other hand can not unwind enough to go to sleep. This is following the usual pattern. So I will listen to some music and hope that it will be enough to to go to sleep.

For almost 24 hours my soul focus has been Eric and I am having trouble shifting back to me. In the past 24 hours I have missed a going away party for Scott Z. who got a great promotion. I missed sitting around with friends just sitting, chatting and knitting. I seem to miss so much when Eric is not feeling well. There just seems to be no balance in my life.

I never wanted to be a nurse when I was growing up. Yet I seem to have spent a large part of the last 3 decades doing just that. Life can be so strange sometimes. My kids have taken me places that I would have never thought of going or doing and for that I thank them.

The Roller Coaster of Life

Eric's MTBF really sucks now. We are back to 7 days. I don't even think a failure review board could help with this. The only thing that made Eric happy tonight was that he made a full load of laundry for me tonight

This is why I run as many errands as possible when Eric is feeling well. I even got to the grocery store today. My plans for tomorrow went into the the blender tonight. I guess it really does not matter when I give friends their holiday gifts, it's he thought that matters. Right?

To end on the bright side tonight Eric got to deliver a chemo cap this morning to a friend for her brother and got all the hugs and kisses for it. Yes, he did go to program today and even got the second highest score in bowling.

Just Another Saturday

Under things never to do in December. First I would pick never to try to traverse a Target parking lot at 1 pm on a Saturday. There were loads of people. Almost no parking spaces so people parked where ever they could find a curb even in the fire lanes. So I had to leave the parking lot to get to the Michaels on the other side of the lot. Even then people were parked in the Peter Piper Pizza parking for Target.

I did manage to make a few more gifts but I was short a few pieces. So I decided not to battle the parking lots again, so the extra pieces I needed will be delivered. I love on line shopping. I also found some time to reorganize some things. On the knitting front, I am almost done with the second of 3 chemo caps.

Crafting

Today I finished up the last of my holiday gifts. I have made about 200 pieces this week. Now the next project will be to repair about a dozen of Eric's bibs and make 2 more hand knit chemo caps for a friends brother. He loves the first one that I made.

I have a lot lot more energy now that my hand feels better. I also get about 10 hours back each week. That gives me more time to do everything.

Eric Was Sick Again

Eric got sick Monday morning on the way to his day program. This has meant 2 to 3 loads of laundry a day of just Eric's clothes and bedding. That laundry does not include John's and my clothes either.  A lot of very long days taking care of him, which has lead to a lot of anxiety on my part. I should be use to this by now.

Eric is finely feeling better and is back on formula. He may even go back to his program today.  I have gotten so tired and stressed this time, that my skin actually hurts. Worse yet for me is that it makes it very hard to catch up on sleep. So in the wee hours of Thursday morning here I sit trying to convince my body that the stress is gone and I should be sleeping. It is not working out very well.

Well I am going to try to go and get some sleep. 6 am comes very fast around here.

Pop Ups

Today I went to my first pop up market. I went to check it out to see if it would be a good venue for my high end creations. The answer is that my high end creations were a perfect fit in style and quality. The bad news is that the I don't have the right artistic pedigree that the hipsters are looking for.

The hipsters seem to value where the artist went to school, more than anything else. I just don't understand how a high debtload makes a person a better artist. I did not go to the right art school, so I guess that I don't have what it takes for a pop up market.

So so at this point I will consider looking for a local gallery that would be a good fit for my weaving and high end pieces. Suggestion are welcome because I don't know this area well.