My son made it through another night. Whoo Hoo! He is completely surrounded by pillows, so he can sleep sitting up. If I threw a blanket over the top, he'd have a fort. Perhaps that's what he's going for. He clings to his queen size bed, refusing to give into a twin-sized adjustable model, while trying to avoid that "hospital" look. As his disability progresses, avoiding the "hospital" look becomes more challenging.
The setup is pretty sweet and we're getting it down. On the floor next to the bed, an oxygen generator sits on one side, the "Vest" and it's machine on the other. The "Vest", an airway clearance device, beats him, so I don't have to. Looking like a life vest, it thumps his chest and back to help him breathe. His color is purple, of course! (The vest, not him... usually.)
Three fans, one overhead, one on his sidetable, and a floor stand model at the foot. His sidetable top holds a digital clock with a large readout, a small lamp (the kind with a flexible arm), lotion, a back scratcher, his phone, glasses, a stuffed toy received as a gift. The sidetable drawer contains the small essentials: oximeter, lip balm, nail clippers and nail files, and personal treasures. The sidetable shelf beneath keeps pajamas, a stethoscope, moist wipes, and a few boxes of personal items, neatly stacked and accessible. Tucked beside the bed is a "people moving pad." I don't know the official name, but that's what I call this most wonderfully simple back saver. The "people moving pad" is quilted with two handles on each of two opposite edges. One side is soft and absorbant. The other is slick and slippery. I flop it over the edge of the bed, transfer my son, and then can pull him into the center of the bed with little effort. Beside the pillows on the bed, sits a box of kleenex, the television remote, and somewhere under a blanket used to cover his feet, his little dog.
Fortunately, both sides of the bed allow wheelchair access, although it's tight. Last night I was thinking that if the room was another 5 feet wide and 5 feet deep, it would be glorious! Every house needs a large master bedroom that can be converted for care giving.
Changes yet to come include installing a floor-to-ceiling grab bar and a new countertop that will serve as a desktop. Above the desktop, his flatscreen television serves as both a regular television and a computer monitor. We just keep working on the improvements.
Friday, January 24, 2014
Oxygen and a Tank of Nonsense
1/23/2014
This morning began as nearly typical. The previous night, like those for the past week, was spent tending to my son who has aspiration pneumonia. I guess all the sweating, over-heating, and shortness of breath, wasn't just a young man with a libido.
We are trying to keep him out of the hospital or E.R., so he won't lose his savings and house to a single bout of illness. He lost his health insurance in November. He applied and was accepted for new insurance, but it doesn't kick in until Febuary 1st, 2014. As soon as nurse friends shared my suspicions (five days ago), that he had developed pneumonia, I began treating him with Cipro. Luckily, we had some. After two doses, his fever began to reduce and the sweating decreased. He was having difficulty breathing, so I jumped on Craigslist to look for medical oxygen tanks. Knowing nothing about them, I sifted through the ads until I found one that sounded promising. The fellow had used the system for his mother, until she passed. I called, he brought the system over, since he was running errands in the neighborhood. We made a deal.
When he came with the oxygen system, he plugged it in and it worked. He warned me that it hadn't been running since he lost his mom. He also said it was overdue for service, but they had purchased an extended warranty with the unit. Originally, the unit cost $1700 or thereabouts from a company in Fountain Valley (where ever that is). Just as he was about to leave, the unit began flashing and beeping an alarm. He offered me a refund, but I said no, I'd keep it.
The next day I called the company in Fountain Valley. I told the woman the situation, asked what the light meant, and questioned if was there anyway to fix the problem. She said, "First, let's see if it was his to sell." She explained, it might be a rental or bought, but not paid off. It had never even crossed my mind that it might not be his! Luckily, it was his. He had bought it outright.
Next, she said these units require a prescription. Did I have one? No, of course not. That never occurred to me either, that a glorified air pump might need a prescription. Has this country gone crazy?!
She said that in all the time she had been working, she had never encountered this type of instance. Nobody had bought a unit, without a prescription, that someone else sold.
Is what I did illegal? I don't think so. He legally had a right to sell it. I desperately needed it to save my son. That which is necessary, is legal, is it not?
#DementiaHusband #OxygenTank
This morning began as nearly typical. The previous night, like those for the past week, was spent tending to my son who has aspiration pneumonia. I guess all the sweating, over-heating, and shortness of breath, wasn't just a young man with a libido.
We are trying to keep him out of the hospital or E.R., so he won't lose his savings and house to a single bout of illness. He lost his health insurance in November. He applied and was accepted for new insurance, but it doesn't kick in until Febuary 1st, 2014. As soon as nurse friends shared my suspicions (five days ago), that he had developed pneumonia, I began treating him with Cipro. Luckily, we had some. After two doses, his fever began to reduce and the sweating decreased. He was having difficulty breathing, so I jumped on Craigslist to look for medical oxygen tanks. Knowing nothing about them, I sifted through the ads until I found one that sounded promising. The fellow had used the system for his mother, until she passed. I called, he brought the system over, since he was running errands in the neighborhood. We made a deal.
When he came with the oxygen system, he plugged it in and it worked. He warned me that it hadn't been running since he lost his mom. He also said it was overdue for service, but they had purchased an extended warranty with the unit. Originally, the unit cost $1700 or thereabouts from a company in Fountain Valley (where ever that is). Just as he was about to leave, the unit began flashing and beeping an alarm. He offered me a refund, but I said no, I'd keep it.
The next day I called the company in Fountain Valley. I told the woman the situation, asked what the light meant, and questioned if was there anyway to fix the problem. She said, "First, let's see if it was his to sell." She explained, it might be a rental or bought, but not paid off. It had never even crossed my mind that it might not be his! Luckily, it was his. He had bought it outright.
Next, she said these units require a prescription. Did I have one? No, of course not. That never occurred to me either, that a glorified air pump might need a prescription. Has this country gone crazy?!
She said that in all the time she had been working, she had never encountered this type of instance. Nobody had bought a unit, without a prescription, that someone else sold.
Is what I did illegal? I don't think so. He legally had a right to sell it. I desperately needed it to save my son. That which is necessary, is legal, is it not?
#DementiaHusband #OxygenTank
Wednesday, January 22, 2014
Surprises of Care Giving
1/17/2014 My husband retired from the USAF as a career fighter pilot. With 737 and Lear jet ratings in hand, he was suppose to be off to the airlines. But, fate laughed and intervened. A rare genetic disease took hold just as he retired. He lost his balance and gained double vision. He grounded himself, saying it wouldn't be safe to fly, seeing how he was losing his sense of up and down.
My son, a software engineer for Qualcomm, was able to put in nearly fifteen years of programming, before being forced to take medical retirement. He shares the same genetic disease as his dad, but has a more aggressive form. The early expression of the disease is called "anticipation."
Three years ago my husband and I moved in with my son, so I could take care of them both, since my son could not live alone. This is where the fun really begins. Having two guys, in wheelchairs, with double vision, coordination problems, numbness in the fingers, toes, and feet, and strength issues led to some interesting discoveries.
The first discovery being it is difficult to maintain a house with a built-in wrecking ball! My husband drives his chair like a jet. With vision and coordination problems, he inevitably ups the speed setting to fast, faster, or fastest, by merely hitting the control as his hand flails around. He can't tell where the door opening are and repeatedly takes out the door frames. Bathrooms are another issue. Often the
commode must be re-set on its base. Four times close encounters with a low flying UFO left cracks in the porcelain requiring replacement of the entire toilet. This discovery evolved over time and was expected as side-effects.
The next discovery was that we qualified for nothing. People often ask me who I have to help. I answer, "I have three people... me, myself, and I." Not only does Medicare not provide for long-term care, but we were told my husband did not qualify for VA benefits. Let me repeat this. My husband had been a U.S.A.F. fighter pilot for 20 years, but he does not qualify for Veterans Administration benefits. We couldn't believe our ears, but then, he's half-deaf and I'm getting there, so our ears aren't reliable. How can this be?
In 2004, Congress passed a bill waging a war on wealth, placing an income limit on veterans. For us, living in Southern California, wealth is considered anything over $56,760. If a veteran saved and invested his earnings, he gets penalized. Congress is rather like the soup-Nazi, "No hearing aids or glasses for you!"
Then, my son lost his insurance. Cobra ran out and Medicare hadn't kicked in. Medicare pays for nothing in regards to long term care. Social Security will provide six months of a limited number of hours of homecare for terminal patients. Do you really think I'm going to tell my son he's terminal, at any point? My son has long-term care insurance, but it only covers two years. We have to decide what the expiration date is on the bottom of his foot and anticipate it two years in advance.
I decided to begin blogging about our family last night. In order to tend to my guys, I am swapping my days and nights. It's 6 a.m. and I've been up all night. Sleep will come in a few more hours. Last night my son decided pneumonia was a fun way to keep me up... again. Several years ago he lost part of a lung to aspiration pneumonia. For several hours last night, it was touch and go as to whether I needed to call 911. A rescue inhaler saved the day, as did the "Vest." The "Vest" looks like a water safety vest. It is designed for people with cystic fibrosis. It rhythmically thumps his chest to help him cough. Even so, he coughed little. His oxygen plummeted to 84%. We have a deal that when it hits 88%, it's E.R. time. He managed to hold mostly between 91-93% for several hours, before the number slowly crept upwards.
#DementiaHusband #VA #Medicare
My son, a software engineer for Qualcomm, was able to put in nearly fifteen years of programming, before being forced to take medical retirement. He shares the same genetic disease as his dad, but has a more aggressive form. The early expression of the disease is called "anticipation."
Three years ago my husband and I moved in with my son, so I could take care of them both, since my son could not live alone. This is where the fun really begins. Having two guys, in wheelchairs, with double vision, coordination problems, numbness in the fingers, toes, and feet, and strength issues led to some interesting discoveries.
 |
| The Bathoom after Terry's Visit |
commode must be re-set on its base. Four times close encounters with a low flying UFO left cracks in the porcelain requiring replacement of the entire toilet. This discovery evolved over time and was expected as side-effects.
The next discovery was that we qualified for nothing. People often ask me who I have to help. I answer, "I have three people... me, myself, and I." Not only does Medicare not provide for long-term care, but we were told my husband did not qualify for VA benefits. Let me repeat this. My husband had been a U.S.A.F. fighter pilot for 20 years, but he does not qualify for Veterans Administration benefits. We couldn't believe our ears, but then, he's half-deaf and I'm getting there, so our ears aren't reliable. How can this be?
In 2004, Congress passed a bill waging a war on wealth, placing an income limit on veterans. For us, living in Southern California, wealth is considered anything over $56,760. If a veteran saved and invested his earnings, he gets penalized. Congress is rather like the soup-Nazi, "No hearing aids or glasses for you!"
Then, my son lost his insurance. Cobra ran out and Medicare hadn't kicked in. Medicare pays for nothing in regards to long term care. Social Security will provide six months of a limited number of hours of homecare for terminal patients. Do you really think I'm going to tell my son he's terminal, at any point? My son has long-term care insurance, but it only covers two years. We have to decide what the expiration date is on the bottom of his foot and anticipate it two years in advance.
I decided to begin blogging about our family last night. In order to tend to my guys, I am swapping my days and nights. It's 6 a.m. and I've been up all night. Sleep will come in a few more hours. Last night my son decided pneumonia was a fun way to keep me up... again. Several years ago he lost part of a lung to aspiration pneumonia. For several hours last night, it was touch and go as to whether I needed to call 911. A rescue inhaler saved the day, as did the "Vest." The "Vest" looks like a water safety vest. It is designed for people with cystic fibrosis. It rhythmically thumps his chest to help him cough. Even so, he coughed little. His oxygen plummeted to 84%. We have a deal that when it hits 88%, it's E.R. time. He managed to hold mostly between 91-93% for several hours, before the number slowly crept upwards.
#DementiaHusband #VA #Medicare
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