Saturday, June 7, 2014

MS PERSPECTIVE FROM A SPOUSE WITH ENDLESS LOVE

Sat. Jun 7, 20June14. Feeling frustrated, angry, confused. In less than a month I will be marrying my partner of thirty-five years -- the love of my life. We are counting down to our anniversary date (the day we originally pledged ourselves) to make it official -- now that we can -- in our state. Our first ‘date’ commenced in a hospital where I was under observation for a new heart med. You see, in our early years I threatened her with the diseases and conditions I was already struggling with and those I figured I might contract along the way. I was right: in the years we’ve been together I’ve racked up 12 more diagnoses plus surgeries and hospital stays. But these seem paltry complaints compared to her dx of MS after a decade into our life together (the ovarian cancer was impressive, too). As it is wont to do, the MS progressed from relapsing/remitting to chronic progressive and we were forced into ‘disability retirement’ and a retirement home
 in 2008. After that home was sold, it began discontinuing its services and marketing its apts to young professionals instead of elderly disabled (I understand it has now forced all but 3 of its residents out) we began looking for and found what we thought was the ideal place -- in a neighborhood we fondly remembered from an earlier life there, within walking/rolling distance to shops, markets, groceries, drugstores, parks; a dedicated team of university students assigned to aid with partner’s transfers. Her legs, knees have been brutalized, yes, brutalized, not just from the ravages of MS weakness and spasticity but by various PTs ruining them with accidental collisions, falls, and ill-fitting devices. So, after initial home care horror stories, and five years in the retirement home with help we could never be sure of, we rejoiced when these aids assured us, “Pivot transfers? No problem, we do those all the time.” We did see not only frail and
 elderly folks but also some with visible disabilities. We believed. After we signed the (many) papers and executed that stressful, exhausting endeavor even for the healthiest -- moving, we discovered that these caregivers used a kind of straight-on muscle and heave approach to transfers, not the “standing pivot transfer’ technique we’ve understood is part of every certified nursing assistant’s training. In our first few days here partner was dropped on the edge of her chair at least three times, from where she would have slid (without functioning core and quad muscles) into a fall had I not come barging in, grasping her knees and giving fight to gravity to get her back into her chair (in some of these instances there were two aides both holding on to her arms or shoulders (another no no) while the lower weak and numb part of her body slid ever closer to the floor). Oh…. frustrated, I am, Yoda. You may recall that I am not well, either--with a
 retinue of immune system troubles, injuries, plus osteoporosis, I am not the best choice to play hero with pain signals running wild, balance askew, and general ill health, but I could not stand by and watch yet another promise to keep her safe fail, this time at thousands per mo. (Believe it.) I am angry because once again, they are asking her, my partner, the PATIENT, to train their aids. With each ‘training’ transfer, she becomes weaker, more spastic (“She’s like dead weight” one complained, while trying to dead lift her off her chair. In a standing pivot transfer, one aids the patient to stand, once they are standing they pivot with you and you can use your leg-based momentum to place them in chair.) If they keep dead-lifting her their backs will start to go out on them. Do we ask so much? Well, does she? She works so hard to keep in shape--lifting arm weights, modified crunches, and hoped to use the spanking new gym downstairs to
 continue. But she has MS ya’ll, chronic progressive MS. Utube is full of standing pivot transfer vids, but they want her to ‘train’. I’m seeing it wear her down, and I don’t want it to wear her out. She has already trained more than 8 aids here, who now have the technique down, but at what cost. What about HER therapy? Her ‘training’? I am worthless, can barely take care of myself. Every time they bring a ‘new’ aid up and I’m crossing my fingers (well, sort of) I break down in fear of her falling and breaking something important this time (medics already tried lifting her---LIFTING her---with wrists and gave her radial nerve palsy on her good arm. That was a six month recovery we don’t want again). I am losing it again. She needs a better WC, how to accomplish when we can barely get properly delivered to dining room for a meal? Maybe just a bad day… Right now they’ve left her with no one to transfer her for a 3 hr block. That
 means no water, no food, no movement, god forbid or she may have to use the toilet and back where we started. Pray, if u pray, pray for us. I am so tired.
By-Karenlee Kitto June 7th, 2014

4 comments:

Webster said...

Sat. Jun 7, 20June14. Feeling frustrated, angry, confused. In less than a month I will be marrying my partner of thirty-five years -- the love of my life. We are counting down to our anniversary date (the day we originally pledged ourselves) to make it official -- now that we can -- in our state. Our first ‘date’ commenced in a hospital where I was under observation for a new heart med. You see, in our early years I threatened her with the diseases and conditions I was already struggling with and those I figured I might contract along the way. I was right: in the years we’ve been together I’ve racked up 12 more diagnoses plus surgeries and hospital stays. But these seem paltry complaints compared to her dx of MS after a decade into our life together (the ovarian cancer was impressive, too). As it is wont to do, the MS progressed from relapsing/remitting to chronic progressive and we were forced into ‘disability retirement’ and a retirement home
 in 2008. After that home was sold, it began discontinuing its services and marketing its apts to young professionals instead of elderly disabled (I understand it has now forced all but 3 of its residents out) we began looking for and found what we thought was the ideal place -- in a neighborhood we fondly remembered from an earlier life there, within walking/rolling distance to shops, markets, groceries, drugstores, parks; a dedicated team of university students assigned to aid with partner’s transfers. Her legs, knees have been brutalized, yes, brutalized, not just from the ravages of MS weakness and spasticity but by various PTs ruining them with accidental collisions, falls, and ill-fitting devices. So, after initial home care horror stories, and five years in the retirement home with help we could never be sure of, we rejoiced when these aids assured us, “Pivot transfers? No problem, we do those all the time.” We did see not only frail and
 elderly folks but also some with visible disabilities. We believed. After we signed the (many) papers and executed that stressful, exhausting endeavor even for the healthiest -- moving, we discovered that these caregivers used a kind of straight-on muscle and heave approach to transfers, not the “standing pivot transfer’ technique we’ve understood is part of every certified nursing assistant’s training. In our first few days here partner was dropped on the edge of her chair at least three times, from where she would have slid (without functioning core and quad muscles) into a fall had I not come barging in, grasping her knees and giving fight to gravity to get her back into her chair (in some of these instances there were two aides both holding on to her arms or shoulders (another no no) while the lower weak and numb part of her body slid ever closer to the floor). Oh…. frustrated, I am, Yoda. You may recall that I am not well, either--with a
 retinue of immune system troubles, injuries, plus osteoporosis, I am not the best choice to play hero with pain signals running wild, balance askew, and general ill health, but I could not stand by and watch yet another promise to keep her safe fail, this time at thousands per mo. (Believe it.) I am angry because once again, they are asking her, my partner, the PATIENT, to train their aids. With each ‘training’ transfer, she becomes weaker, more spastic (“She’s like dead weight” one complained, while trying to dead lift her off her chair. In a standing pivot transfer, one aids the patient to stand, once they are standing they pivot with you and you can use your leg-based momentum to place them in chair.) If they keep dead-lifting her their backs will start to go out on them. Do we ask so much? Well, does she? She works so hard to keep in shape--lifting arm weights, modified crunches, and hoped to use the spanking new gym downstairs to
 continue. But she has MS ya’ll, chronic progressive MS. Utube is full of standing pivot transfer vids, but they want her to ‘train’. I’m seeing it wear her down, and I don’t want it to wear her out. She has already trained more than 8 aids here, who now have the technique down, but at what cost. What about HER therapy? Her ‘training’? I am worthless, can barely take care of myself. Every time they bring a ‘new’ aid up and I’m crossing my fingers (well, sort of) I break down in fear of her falling and breaking something important this time (medics already tried lifting her---LIFTING her---with wrists and gave her radial nerve palsy on her good arm. That was a six month recovery we don’t want again). I am losing it again. She needs a better WC, how to accomplish when we can barely get properly delivered to dining room for a meal? Maybe just a bad day… Right now they’ve left her with no one to transfer her for a 3 hr block. That
 means no water, no food, no movement, god forbid or she may have to use the toilet and back where we started. Pray, if u pray, pray for us. I am so tired.
By-Karenlee Kitto June 7th, 2014

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OldLady Of The Hills said...

Sat. Jun 7, 20June14. Feeling frustrated, angry, confused. In less than a month I will be marrying my partner of thirty-five years -- the love of my life. We are counting down to our anniversary date (the day we originally pledged ourselves) to make it official -- now that we can -- in our state. Our first ‘date’ commenced in a hospital where I was under observation for a new heart med. You see, in our early years I threatened her with the diseases and conditions I was already struggling with and those I figured I might contract along the way. I was right: in the years we’ve been together I’ve racked up 12 more diagnoses plus surgeries and hospital stays. But these seem paltry complaints compared to her dx of MS after a decade into our life together (the ovarian cancer was impressive, too). As it is wont to do, the MS progressed from relapsing/remitting to chronic progressive and we were forced into ‘disability retirement’ and a retirement home
 in 2008. After that home was sold, it began discontinuing its services and marketing its apts to young professionals instead of elderly disabled (I understand it has now forced all but 3 of its residents out) we began looking for and found what we thought was the ideal place -- in a neighborhood we fondly remembered from an earlier life there, within walking/rolling distance to shops, markets, groceries, drugstores, parks; a dedicated team of university students assigned to aid with partner’s transfers. Her legs, knees have been brutalized, yes, brutalized, not just from the ravages of MS weakness and spasticity but by various PTs ruining them with accidental collisions, falls, and ill-fitting devices. So, after initial home care horror stories, and five years in the retirement home with help we could never be sure of, we rejoiced when these aids assured us, “Pivot transfers? No problem, we do those all the time.” We did see not only frail and
 elderly folks but also some with visible disabilities. We believed. After we signed the (many) papers and executed that stressful, exhausting endeavor even for the healthiest -- moving, we discovered that these caregivers used a kind of straight-on muscle and heave approach to transfers, not the “standing pivot transfer’ technique we’ve understood is part of every certified nursing assistant’s training. In our first few days here partner was dropped on the edge of her chair at least three times, from where she would have slid (without functioning core and quad muscles) into a fall had I not come barging in, grasping her knees and giving fight to gravity to get her back into her chair (in some of these instances there were two aides both holding on to her arms or shoulders (another no no) while the lower weak and numb part of her body slid ever closer to the floor). Oh…. frustrated, I am, Yoda. You may recall that I am not well, either--with a
 retinue of immune system troubles, injuries, plus osteoporosis, I am not the best choice to play hero with pain signals running wild, balance askew, and general ill health, but I could not stand by and watch yet another promise to keep her safe fail, this time at thousands per mo. (Believe it.) I am angry because once again, they are asking her, my partner, the PATIENT, to train their aids. With each ‘training’ transfer, she becomes weaker, more spastic (“She’s like dead weight” one complained, while trying to dead lift her off her chair. In a standing pivot transfer, one aids the patient to stand, once they are standing they pivot with you and you can use your leg-based momentum to place them in chair.) If they keep dead-lifting her their backs will start to go out on them. Do we ask so much? Well, does she? She works so hard to keep in shape--lifting arm weights, modified crunches, and hoped to use the spanking new gym downstairs to
 continue. But she has MS ya’ll, chronic progressive MS. Utube is full of standing pivot transfer vids, but they want her to ‘train’. I’m seeing it wear her down, and I don’t want it to wear her out. She has already trained more than 8 aids here, who now have the technique down, but at what cost. What about HER therapy? Her ‘training’? I am worthless, can barely take care of myself. Every time they bring a ‘new’ aid up and I’m crossing my fingers (well, sort of) I break down in fear of her falling and breaking something important this time (medics already tried lifting her---LIFTING her---with wrists and gave her radial nerve palsy on her good arm. That was a six month recovery we don’t want again). I am losing it again. She needs a better WC, how to accomplish when we can barely get properly delivered to dining room for a meal? Maybe just a bad day… Right now they’ve left her with no one to transfer her for a 3 hr block. That
 means no water, no food, no movement, god forbid or she may have to use the toilet and back where we started. Pray, if u pray, pray for us. I am so tired.
By-Karenlee Kitto June 7th, 2014

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Muffie said...

Sat. Jun 7, 20June14. Feeling frustrated, angry, confused. In less than a month I will be marrying my partner of thirty-five years -- the love of my life. We are counting down to our anniversary date (the day we originally pledged ourselves) to make it official -- now that we can -- in our state. Our first ‘date’ commenced in a hospital where I was under observation for a new heart med. You see, in our early years I threatened her with the diseases and conditions I was already struggling with and those I figured I might contract along the way. I was right: in the years we’ve been together I’ve racked up 12 more diagnoses plus surgeries and hospital stays. But these seem paltry complaints compared to her dx of MS after a decade into our life together (the ovarian cancer was impressive, too). As it is wont to do, the MS progressed from relapsing/remitting to chronic progressive and we were forced into ‘disability retirement’ and a retirement home
 in 2008. After that home was sold, it began discontinuing its services and marketing its apts to young professionals instead of elderly disabled (I understand it has now forced all but 3 of its residents out) we began looking for and found what we thought was the ideal place -- in a neighborhood we fondly remembered from an earlier life there, within walking/rolling distance to shops, markets, groceries, drugstores, parks; a dedicated team of university students assigned to aid with partner’s transfers. Her legs, knees have been brutalized, yes, brutalized, not just from the ravages of MS weakness and spasticity but by various PTs ruining them with accidental collisions, falls, and ill-fitting devices. So, after initial home care horror stories, and five years in the retirement home with help we could never be sure of, we rejoiced when these aids assured us, “Pivot transfers? No problem, we do those all the time.” We did see not only frail and
 elderly folks but also some with visible disabilities. We believed. After we signed the (many) papers and executed that stressful, exhausting endeavor even for the healthiest -- moving, we discovered that these caregivers used a kind of straight-on muscle and heave approach to transfers, not the “standing pivot transfer’ technique we’ve understood is part of every certified nursing assistant’s training. In our first few days here partner was dropped on the edge of her chair at least three times, from where she would have slid (without functioning core and quad muscles) into a fall had I not come barging in, grasping her knees and giving fight to gravity to get her back into her chair (in some of these instances there were two aides both holding on to her arms or shoulders (another no no) while the lower weak and numb part of her body slid ever closer to the floor). Oh…. frustrated, I am, Yoda. You may recall that I am not well, either--with a
 retinue of immune system troubles, injuries, plus osteoporosis, I am not the best choice to play hero with pain signals running wild, balance askew, and general ill health, but I could not stand by and watch yet another promise to keep her safe fail, this time at thousands per mo. (Believe it.) I am angry because once again, they are asking her, my partner, the PATIENT, to train their aids. With each ‘training’ transfer, she becomes weaker, more spastic (“She’s like dead weight” one complained, while trying to dead lift her off her chair. In a standing pivot transfer, one aids the patient to stand, once they are standing they pivot with you and you can use your leg-based momentum to place them in chair.) If they keep dead-lifting her their backs will start to go out on them. Do we ask so much? Well, does she? She works so hard to keep in shape--lifting arm weights, modified crunches, and hoped to use the spanking new gym downstairs to
 continue. But she has MS ya’ll, chronic progressive MS. Utube is full of standing pivot transfer vids, but they want her to ‘train’. I’m seeing it wear her down, and I don’t want it to wear her out. She has already trained more than 8 aids here, who now have the technique down, but at what cost. What about HER therapy? Her ‘training’? I am worthless, can barely take care of myself. Every time they bring a ‘new’ aid up and I’m crossing my fingers (well, sort of) I break down in fear of her falling and breaking something important this time (medics already tried lifting her---LIFTING her---with wrists and gave her radial nerve palsy on her good arm. That was a six month recovery we don’t want again). I am losing it again. She needs a better WC, how to accomplish when we can barely get properly delivered to dining room for a meal? Maybe just a bad day… Right now they’ve left her with no one to transfer her for a 3 hr block. That
 means no water, no food, no movement, god forbid or she may have to use the toilet and back where we started. Pray, if u pray, pray for us. I am so tired.
By-Karenlee Kitto June 7th, 2014

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Diane J Standiford said...

Sat. Jun 7, 20June14. Feeling frustrated, angry, confused. In less than a month I will be marrying my partner of thirty-five years -- the love of my life. We are counting down to our anniversary date (the day we originally pledged ourselves) to make it official -- now that we can -- in our state. Our first ‘date’ commenced in a hospital where I was under observation for a new heart med. You see, in our early years I threatened her with the diseases and conditions I was already struggling with and those I figured I might contract along the way. I was right: in the years we’ve been together I’ve racked up 12 more diagnoses plus surgeries and hospital stays. But these seem paltry complaints compared to her dx of MS after a decade into our life together (the ovarian cancer was impressive, too). As it is wont to do, the MS progressed from relapsing/remitting to chronic progressive and we were forced into ‘disability retirement’ and a retirement home
 in 2008. After that home was sold, it began discontinuing its services and marketing its apts to young professionals instead of elderly disabled (I understand it has now forced all but 3 of its residents out) we began looking for and found what we thought was the ideal place -- in a neighborhood we fondly remembered from an earlier life there, within walking/rolling distance to shops, markets, groceries, drugstores, parks; a dedicated team of university students assigned to aid with partner’s transfers. Her legs, knees have been brutalized, yes, brutalized, not just from the ravages of MS weakness and spasticity but by various PTs ruining them with accidental collisions, falls, and ill-fitting devices. So, after initial home care horror stories, and five years in the retirement home with help we could never be sure of, we rejoiced when these aids assured us, “Pivot transfers? No problem, we do those all the time.” We did see not only frail and
 elderly folks but also some with visible disabilities. We believed. After we signed the (many) papers and executed that stressful, exhausting endeavor even for the healthiest -- moving, we discovered that these caregivers used a kind of straight-on muscle and heave approach to transfers, not the “standing pivot transfer’ technique we’ve understood is part of every certified nursing assistant’s training. In our first few days here partner was dropped on the edge of her chair at least three times, from where she would have slid (without functioning core and quad muscles) into a fall had I not come barging in, grasping her knees and giving fight to gravity to get her back into her chair (in some of these instances there were two aides both holding on to her arms or shoulders (another no no) while the lower weak and numb part of her body slid ever closer to the floor). Oh…. frustrated, I am, Yoda. You may recall that I am not well, either--with a
 retinue of immune system troubles, injuries, plus osteoporosis, I am not the best choice to play hero with pain signals running wild, balance askew, and general ill health, but I could not stand by and watch yet another promise to keep her safe fail, this time at thousands per mo. (Believe it.) I am angry because once again, they are asking her, my partner, the PATIENT, to train their aids. With each ‘training’ transfer, she becomes weaker, more spastic (“She’s like dead weight” one complained, while trying to dead lift her off her chair. In a standing pivot transfer, one aids the patient to stand, once they are standing they pivot with you and you can use your leg-based momentum to place them in chair.) If they keep dead-lifting her their backs will start to go out on them. Do we ask so much? Well, does she? She works so hard to keep in shape--lifting arm weights, modified crunches, and hoped to use the spanking new gym downstairs to
 continue. But she has MS ya’ll, chronic progressive MS. Utube is full of standing pivot transfer vids, but they want her to ‘train’. I’m seeing it wear her down, and I don’t want it to wear her out. She has already trained more than 8 aids here, who now have the technique down, but at what cost. What about HER therapy? Her ‘training’? I am worthless, can barely take care of myself. Every time they bring a ‘new’ aid up and I’m crossing my fingers (well, sort of) I break down in fear of her falling and breaking something important this time (medics already tried lifting her---LIFTING her---with wrists and gave her radial nerve palsy on her good arm. That was a six month recovery we don’t want again). I am losing it again. She needs a better WC, how to accomplish when we can barely get properly delivered to dining room for a meal? Maybe just a bad day… Right now they’ve left her with no one to transfer her for a 3 hr block. That
 means no water, no food, no movement, god forbid or she may have to use the toilet and back where we started. Pray, if u pray, pray for us. I am so tired.
By-Karenlee Kitto June 7th, 2014

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