This week I thought was going to be much better it started off with Mother's day, that was a nice day. My dad took Jaren shopping for a present because he can't drive. I had wonderful programs I was able to go to at the school for my kids it was a great start to the week.
I finally got up enough courage to call some more places for some resources and guess what happened I fell right back on my face again, seriously how disabled do you have to be to get resources in Utah. Well I am was so upset I couldn't even get help from the Alzeheimers Association because he isn't old enough to have symptoms of Alzeheimers but MLD is much like Alzeheimers so again I am at a stand still. I didn't give up hope yet though I was so discouraged with this state that I emailed the governor I am fed up with this state not helping people that are working their butts off to provide for their families I am going to email and email and email him until I can get somewhere I am fed up.
Jaren's memory is getting worse he didn't remember how to tie a tie the other day. How can I go and find a job when he can't even qualify for a day program for the disabled, what do I do? He follows me everywhere I go, if I am at the computer he looks over my shoulder the whole time until I find him something to do. I don't want to put him in a nursing home. I called Social Security last week to find out if they could help with something and of course I could get mother's benefits but it would come out of the kids' benefits and why would I want to do that? I wouldn't be able to work either. I have contacted so many people in the last 3 months and have gotten no where. I am trying my hardest to keep the family going as normal as possible but inside I am sooooooo FRUSTRATED that I cry all the time. I can't handle the pressure of caretaking and trying to find a job when I can't even leave the house. I have contacted division for people with disabilities and nothing they can do either.
That is the week we have had so far and it is only Tuesday, we still have 5 more days I will just keep going and hope something opens up for me.
Dear Jamie,
ReplyDeletePlease know that we pray for you and your family every day. I am so sorry that you are going through such hard times. How can we help? Would it be helpful to you if we had Jaren come and spend some time with us on the weekend? Caring for someone who is constantly following you is so hard. I know, at times I used to hide behind my clothes in the closet when I needed a breather. I love you.
Thanks, the weekends are not to bad because the kids are all home. I need to find somewhere to have him go, because I have to find a job.
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