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I have been disabled since 1996 from a back injury while doing yard work.
My wife, 17 year special needs son, and I live on SS only. No other income.
After a stroke (#5) in Nov. 2017 which resulted in right side weakness, my wife spent about 20 months in 5 different SNF for rehab and LTC. She is covered by medicaid and Medicare due to disability.
After she cam home she had 2 other rehab placements after hospitalizations. She had 2 falls at one facility which resulted in 5 fractured vertebra, 2 cervical and 3 thoracic.
Due to the need of Coumadin for A-Fib, mechanical valves, (aortic and mitral), also COPD #rd Stage kidney disease and some lived disease, she is considered very high risk for any surgery. March 30, 2020, she had the cervical repaired and suffered NO complications from the surgery. June 8, 2020 she had the thoracic repaired.
Before the June 8th surgery she was able to transfer herself from bed to WC and toiled, recliner shower bench, and care for herself about 50%. She had an overnight stay at the hospital after the surgery and came home with a catheter in place. As the week progressed she complained about weakness in her good (left) leg. She did not mention loss of feeling or ability to move it.
On June 14th I took her to the ER for extreme abdominal pain. They found pneumonia and admitted her, On the 15th she told one of the Dr's that she couldn't feel or move her left leg. After CT Scan on the 15th and MRI on the 16th they found a blood clot on her spine. Did emergency surgery that night. She was transferred to rehab on the 19th.
August 4th she came home. She is confined to either bed or a wheel chair. I am doing my best to care for her with 12 hours a week of aide service 1 nurse visit a week, and PT/OT 1 day each.
She can feed herself!
I have asked insurance co for 8 hours, 7 days a week in assistance but I struggle to care for her as best as I can in the mean time.


I am keeping my son home from school the first 9 weeks, not due to COVID, but in case I need his help in moving her. He will be in distance learning with his special needs school for his senior year. He is a big, strong boy. However I do NOT allow him to be used for bathroom or dressing needs.

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garylee, what a crucible your family is going through. I am so very sorry. I hope that your caseworker support is as good as it gets. This has to be so dreadfully difficult.
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