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Oldest daughter in special education after being hospitalized, ongoing issues. Our youngest has selective mutism. Mom end stage COPD and doesn't understand why I can't help her.


Am about to have major surgery soon. Have heard how selfish and who will take care of everyone while I heal. I don't know. I know if I don't will be quadriplegic. Am already disabled and live in severe pain. My normally low BP is now 155/115.


I have been cooking and freezing meals as fast as I can. I cook all organic GMO free food. I make EVERYTHING myself both due to cost and ingredients are better. We don't buy packaged anything.


I am trying so hard but am starting to panic.


If anyone else has made it through please let me know.


No local family, almost no family at all.


We don't qualify for everything because we get Medicaid with spend down trust pool.


I am usually optimistic but the non stop cooking is leaving me barely able to lift my arms due to pain.


Are there any non profits?


Can't maintain house very well.


Our income counts garnished money to pay mortgage because house burned down and my husband couldn't remember what we had so they claimed fraud to deny.


We don't even qualify for food stamps or HEAP.


Any suggestions?

Best of luck on your surgery. What type of help are you looking for? A non profit for what?
Per your post(s)your husband is to begin rehab soon - will he be at a Rehab center when you have your surgery? If so he will be taken care of.
How old are the kids? If they are old enough perhaps your mom can oversee them during your surgery and post op. Will you also need to be at rehab post surgery?
What kind of surgery are you going to have?
You’ve certainly cooked enough - sounds like cooking may be a stress outlet but yes after making all those meals I will bet your arms are aching.
Take care of yourself now - get mentally set for your surgery so you can go in get the procedure over with & begin your own recovery.
You’ve posted the same question 4 times. I am hoping you don’t miss some good responses as the responses won’t be in the same thread.
Good luck on your surgery! I hope all goes well.
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Reply to Shane1124
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KUpstateNY May 12, 2019
He started outpatient.

Without me here he won't remember to take meds, day of the week.... not sure what but need some sort of help.

My mom not ambulatory, needs help herself.

My girls 14 & 8, special education and selective mutism.

I don't know who will take care of anyone while I am in hospital and recovering.

That's why I am lost.

My spinal cord is badly compressed with bone spurs in it between C4 and C6. If I don't address will be quadriplegic. I have no choice about surgery but I don't know how to make sure my family is taken care of.

They have to remove 3 discs, bone grafts, titanium plates to stabilize and protect my spinal cord from further damage. My dr said if average person would have sent to ER as a minor fender bender could leave me a quadriplegic.

But, my home life is harder than most with no help. I don't know how I will even care for my own needs so am desperately trying to ensure at least food is covered. I don't even use a microwave due to the radiation it puts into food.

I am hoping will be eligible for some type of help but I don't know yet.

Thank you for any information that you can help me fill in the blanks for.

Oh, surgery 80% success so am going under assumption that I am the four out of five successes not the one in five in which case my care would not be a variable.

Thank you and God bless
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If you have a special needs child, you should have a service coordinator that can direct you to the proper agencies that can help you. Call your child’s case manager or reach out to department of aging in your community.
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Reply to Momsgoto
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KUpstateNY May 7, 2019
Uunfortunately I am 47 and he is 44. We don't qualify for same as over 60 in NY.

Him and I both have Medicare and $2,470 a month deducted from account for spend down trust pool. It's a way to qualify for some Medicaid services but not LTC. The money is paid directly to our bills.

I have to protect my children being able to get life policies without having to pay back.

I know are better options bc he's considered TBI on top of cancer but I am burned out to the point can't search.

I cooked and froze 40 pounds assorted chicken dinners. The vegetables have to be added as they come from CSA.

I am trying to make it as easy for them as possible as long as I can get back down stairs within a few weeks.

My mom has an aid but she will only wash dishes made while there. She actually sits with her feet up instead of cleaning bc they do very limited activities.

My daughter has an advocate but has been on waiting list two years for a worker who takes her places. I told advocate about surgery but so far she's still looking into 3 weeks later.

I barely sleep, I am now panicked bc unless at least 40 dinners plus extras won't have enough meals cooked.

I don't know how long until I am able to at least cook, laundry, I don't know how anything will get done. I move slowly but accomplish something.

I still have close to 30 more dinners to make and will need another chest freezer. Food is all I can control so I obsess over it. I didn't think about how much they would eat the day I cooked before freezing.

I wish had cameras to make sure doors closed and stove off.

I keep praying and am hoping my prep work gets us through.

Maybe her place on list is soon but the hard part is caring for my husband especially after surgery.

I know need to get paperwork in order just in case am in 20% not 80% group. Am just overwhelmed.

Thank you for your time.

God bless

Kim
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