Caring for Tom (and Marti)
Donation protected
From Marti, Tom's wife of 40+ years:
"Tom used to take care of me, now he needs me to take care of him. Medicaid is requiring us to spend more than we have in order to qualify for assistance. I will soon have to take care of my husband alone, because they will no longer pay for home health aides. I am 73, in poor health, and can hardly walk due to a bad leg that needs surgery. We have no children. I have no siblings and his are also elderly and infirm. I have exhausted our savings and used up all our home equity to make up the difference. In a couple months, we won’t have anything left, and all the Medicaid money will stop because we can’t spend what they demand. Since Tom has a combined pension and Social Security income which slightly exceeds their limits, we must contribute more for medical expenses than is left after our basic living expenses in order to receive Medicaid, which is currently paying for the aides and Medicare copays for doctors.
On February 7, 2016, Super Bowl Sunday, our lives came crashing down when my husband, Thomas A Levy, age then 72, collapsed in the bathroom with a massive cerebral hemorrhage caused by a congenital condition called an AVM (arterial venous malformation). For a month he was in the ICU, then he was transferred to various acute care and rehabilitation facilities and finally came home August 3, but contracted an infection which caused him to be rehospitalized and came home “for good” November 8.
Sadly, he was now unable to stand and walk or eat other than pureed food or drink thickened liquids, and his memory, judgment and “cognitive function” were grossly impaired. He needed home health aides to be with him 24–7. Since then with months of therapy and healing, he is now able to eat regular food without choking, and walk with a walker, but only if someone stands close by because the part of his brain responsible for balance was damaged. He often forgets and tries to stand and walk by himself. Until just a couple weeks ago he couldn’t remember what he had eaten for dinner. Now he sometimes is actually able to recall, showing that he is still improving although incredibly slowly. He still gets disoriented and thinks we are at some other house besides our home. He still forgets and tries to stand up without his walker, making him a tremendous fall risk. He continues to need an aide all day and night, every day.
I am not able to take care of Tom by myself. Not only does helping him and making sure he is safe require full attention all the time, precluding doing anything else, but I a physically unable. Due to an injury, I had to have screws placed in my back in 1992. Last year, I broke my hip, which still is weak. I have a knee that is badly deformed, what they call “valgus.” I had just had knee surgery (which did not fix the problem) two weeks before. I need to have it replaced, but haven’t been able to get it done. My health has always been poor and Tom had been taking care of me most of our 40 plus years together.
We had a very meager savings, and a line of credit in addition to our mortgage. Most of that has gone toward paying the home health aides: $40,480.49 (with another $2,447.50 going for renting a wheelchair ramp) in 2016; $116,460.87 in 2017 and $16,220.30 so far in 2018. The amount went down after we qualified for Medicaid assistance for care in the home, but in order to qualify we must spend $3,021.33 every month toward the aides.
We have had to put many expenses on credit cards, like incontinence products and drink thickener, especially since I have to purchase everything on the internet. Some of the agencies required that we use a credit card for payment. Unlike many healthcare providers who treat you first and then bill you, if you don’t pay the home health agency right away, they won’t send aides. While we had a balance on our line of credit, we had virtually no credit card debt when Tom collapsed.
Our monthly income including Social Security and pensions is $5,514.99. Our monthly living expenses including mortgage, utilities, debt payments, insurance, food etc are about $4,050.00. Subtracting the required expenditure of $ 3,021.33 (which is going up in 2019) that leaves us with a deficit of $1,556.34. Twenty thousand dollars would keep us from running totally out of money for the next year. With a lot of work there is hope that by then Tom will be recovered enough to no longer need such extensive, expensive care. Another $2000 to $4000 would pay for hearing aids, which could aid his cognition and balance. Neither of us has seen a dentist for two years."
"Tom used to take care of me, now he needs me to take care of him. Medicaid is requiring us to spend more than we have in order to qualify for assistance. I will soon have to take care of my husband alone, because they will no longer pay for home health aides. I am 73, in poor health, and can hardly walk due to a bad leg that needs surgery. We have no children. I have no siblings and his are also elderly and infirm. I have exhausted our savings and used up all our home equity to make up the difference. In a couple months, we won’t have anything left, and all the Medicaid money will stop because we can’t spend what they demand. Since Tom has a combined pension and Social Security income which slightly exceeds their limits, we must contribute more for medical expenses than is left after our basic living expenses in order to receive Medicaid, which is currently paying for the aides and Medicare copays for doctors.
On February 7, 2016, Super Bowl Sunday, our lives came crashing down when my husband, Thomas A Levy, age then 72, collapsed in the bathroom with a massive cerebral hemorrhage caused by a congenital condition called an AVM (arterial venous malformation). For a month he was in the ICU, then he was transferred to various acute care and rehabilitation facilities and finally came home August 3, but contracted an infection which caused him to be rehospitalized and came home “for good” November 8.
Sadly, he was now unable to stand and walk or eat other than pureed food or drink thickened liquids, and his memory, judgment and “cognitive function” were grossly impaired. He needed home health aides to be with him 24–7. Since then with months of therapy and healing, he is now able to eat regular food without choking, and walk with a walker, but only if someone stands close by because the part of his brain responsible for balance was damaged. He often forgets and tries to stand and walk by himself. Until just a couple weeks ago he couldn’t remember what he had eaten for dinner. Now he sometimes is actually able to recall, showing that he is still improving although incredibly slowly. He still gets disoriented and thinks we are at some other house besides our home. He still forgets and tries to stand up without his walker, making him a tremendous fall risk. He continues to need an aide all day and night, every day.
I am not able to take care of Tom by myself. Not only does helping him and making sure he is safe require full attention all the time, precluding doing anything else, but I a physically unable. Due to an injury, I had to have screws placed in my back in 1992. Last year, I broke my hip, which still is weak. I have a knee that is badly deformed, what they call “valgus.” I had just had knee surgery (which did not fix the problem) two weeks before. I need to have it replaced, but haven’t been able to get it done. My health has always been poor and Tom had been taking care of me most of our 40 plus years together.
We had a very meager savings, and a line of credit in addition to our mortgage. Most of that has gone toward paying the home health aides: $40,480.49 (with another $2,447.50 going for renting a wheelchair ramp) in 2016; $116,460.87 in 2017 and $16,220.30 so far in 2018. The amount went down after we qualified for Medicaid assistance for care in the home, but in order to qualify we must spend $3,021.33 every month toward the aides.
We have had to put many expenses on credit cards, like incontinence products and drink thickener, especially since I have to purchase everything on the internet. Some of the agencies required that we use a credit card for payment. Unlike many healthcare providers who treat you first and then bill you, if you don’t pay the home health agency right away, they won’t send aides. While we had a balance on our line of credit, we had virtually no credit card debt when Tom collapsed.
Our monthly income including Social Security and pensions is $5,514.99. Our monthly living expenses including mortgage, utilities, debt payments, insurance, food etc are about $4,050.00. Subtracting the required expenditure of $ 3,021.33 (which is going up in 2019) that leaves us with a deficit of $1,556.34. Twenty thousand dollars would keep us from running totally out of money for the next year. With a lot of work there is hope that by then Tom will be recovered enough to no longer need such extensive, expensive care. Another $2000 to $4000 would pay for hearing aids, which could aid his cognition and balance. Neither of us has seen a dentist for two years."
Organizer and beneficiary
John Spiegelman
Organizer
Abington, PA
Martha Rudrauff
Beneficiary