I'll hammer "Hamilton" in the evening too. This is the company that suppose to provide Ada with the hospital bed, the wheelchair and the commode. We received a loan hospital bed, the one with the crank so we can raise the bed up and down. By the time I have to bend down and do that, I might just go ahead and bend down to change Ada. My back hurt.
We got the loan commode, the one that can support 300 lbs, 6' 3" man, but Ada is only 98 lbs and 5' 6". It is so big that I was afraid she will fall down the hole in the middle, and it has the bar across from the back and we cannot put it over the stall.
We got the wheelchair that the cushion is about 4" short for Ada's leg, so she can easily slide off the chair. The proper seat belt is also needed.
Well, people always blame Medicaid for slow process, but in Ada's case, she got everything approved very fast, if the request had been submitted to medicaid office, that's it. After 5 weeks and numerous phone calls, we just found out that Hamilton hasn't submitted anything to Medicaid. So my daughter has to sit uncomfortably in her wheelchair, in the commode and I am about to break my back bending down to change her 6-7 times a day.
I always get a comment from friends that I am being too nice, being to patient, being too passive. How can "being so nice" turn out to be such a bad thing. And if people can't keep their words, what the "promise" is for. I did make phone calls to those people. Lots of phone calls that nobody care to listen. ALL I WANT TO DO IS TAKING CARE OF MY DAUGHTER. If I call and have to yell at somebody, I will be so upset that I can't even go to Ada's room. I don't cry in front of her and she knows whether I am happy or sad or mad. Why can't they just do their job, the one that they suppose to do, the one they get paid for to do so I can do my job.
I understand that I have to be an advocate, a voice for my daughter, but I cannot spend times on the phone calling people everyday. I feed her, clean her, bath her, give her medicine, sing to her, talk to her, transfer her from bed to chair, from chair to bed, help her sit up on the bed, make sure she does not fall down from the commode, exercises her legs and her arms (since she hadn't seen the PO and OT for 5 weeks), push her outside around the neighborhood, give her hugs and kisses, tell her how much I love her, oh, and I have to take care of my family too. I realized how much work I have to do if I take Ada home instead of letting her stay in the nursing home, rooming with the 85 years old grandma, I am willing to do all this and willing to spend the rest of my life taking care of her, if I have to.
Sorry for the weenie-weinie.
Hugs
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4 comments:
What a title!
Your trying everyday life is too real. The way you told your story touches and moves me more than any movies or documentaries have ever done.
I realize that I can only give you this little support. I hear you and I feel for you. Thanks for giving credits to Medicaid's workers and fairly put the blame to the Hamilton people who failed to do their job. I keep hearing that People in social services are overworked, underpaid and do not feel appreciated. I pray that you find more advocates who will recognize you as a person and not just a case number. I work in a state system and know how every one of us can justify how she feels and why she does or doesn't do anything...and everything.
Can you assign 30 minutes everyday to call these people with civilized reminders? Pick the time that disrupts your day the least and stick to it. Get Piak, Arty and Archiec to help too. People should learn that they will hear from you everyday and they can't ignore you. You are always nice so even if you are upset and want to be nasty; you are still nice. Hopefully this routine will ease the tension and upset you less. I really concern on how you manage your stress. As long as you feel in control, I hope you will never break down. By the way, is there any back exercise you can quickly do?
We love you, Ponsawan. May God continue to give you everyday peace and super-human strenght and sustain you through this time.
Thank you for your posts.
Love,
Yui
Ponsawan,
I was just now successfully made a donation using my credit card. Paypal certainly wants me to use my bank account so it can benefit from the float.
If you dont' get the full amount because of credit card processing fee, please let me know.
I can do the bank draft next time. I plan to donate every month however much I can afford.
Love,
Yui
I suggest someone in your family or a friend in Indianapolis take this to THE MEDIA. When personal communication has not succeeded you have to borrow a louder voice. Call a talk back radio station or a newspaper and tell them you have this story to tell. If they can link it to politicians something will heppen quickly.
In Australia, people in powerless positions often use the media to make thier voice heard. Someone will step out to do something. They either have to cover their bottoms or use the opportunity to make themself popular.
Local and may be national media too is always hungry for stories like Ada's.
I feel so much for you right now.
Hang in there, Ponsawan. I feel so badly that you are having to struggle like this. Taking care of Ada is more than enough to deal with for one person. Never doubt what a wonderful job you are doing and what a wonderful mother you are.
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