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Jun. 2nd, 2002 11:38 pmIt has now been over six weeks since I flew to Florida to take care of my mama -- six very long weeks. I think that one day in a hospital equals a week, which would explain why I feel like I have been here a year. This is also the longest time I have ever been away from Troy or Lon since our relationships began 17 and 9 years ago. I can’t begin to say how much I miss them, my cats, my friends – my life.
Mary is doing better than when I arrived, but not well yet. Every day here has been a struggle – with doctors, nurses and other “health care professionals” who don’t listen. I have actually fired a nurse, a tech, a doctor and a physical therapist from my mother’s care in this time period. At once point a person who was suppose to be helping clean my mother, actually assaulted her. My mom was trying to roll over so that the woman could wash her back. The woman was rude and impatient, first verbally, but then she physically shoved mom at her waist area. When my mother screamed in pain, the woman then had the nerve to yell at her saying that “there were people in worse pain” than her. I was a witness to this and was so angry I told her supervisor that I would have the woman charged with assault if she ever came near my mom again. Turns out the spot she shoved was where mom’s gall-bladder was. Within 24-hours my mom was on a respirator and dialysis and they were telling me she probably would not live. That was a month ago.
Last week a doctor at the rehab place had the nerve to tell mom that being sick was all her own fault because she is fat. I called him thinking he could not really have meant that and he was worse than mom even described. I went directly to the rehab director and we had a new doctor within the hour.
These are only two of dozens and dozens of times I have had to intervene for mom. I am angry and disgusted with much of the “care” she has received. Though some are worse than others, even some of the “nice” ones treat my mother as if she were wining and it is all in her head. They don’t believe me when I explain that she actually has a very high pain threshold and that if she says the pain is unbearable, it is.
There have been some good ones, but I am exhausted. Seeing my mom in almost constant pain for so long, having to fight the system for her care, dealing with the financial crisis this has created for us, and the work of packing and moving everything she owns – all without my support system – I just don’t know how I am still standing some days. But how could I not? Mary is so amazingly strong and so loving, I can’t imagine being anywhere but her side when she needs me so badly. She is my hero. This woman they think is weak. They wouldn’t believe everything she has been through. I am amazed by all she has survived and all she has accomplished so far. And I want more. I want at least another 20 years with her. I need it.
She has healed from most of the complications of her stay in the hospital – bleeding ulcer, blood clot in the heart, removal of a diseases gall bladder, muscle atrophy from prolonged confinement to a bed, hundreds of bruises and punctures from bruises and mishandling. She has had so many xrays she probably glows in the dark. A stack so large and thick that I could barely pick it up (that is after I had to fight with the hospital to get them so that the new doctor at rehab could see them). But her original complaint remains. She has intense, sharp back pain that is so bad she turns pale, cold and clammy if she moves, let alone tries to sit up.
The new doctor (who has actually listed to us) thinks she has found the answer. Something the hospital tested for but didn’t follow up on. Mary has an infection, probably in her spine/backbone. In the morning, we have to go back to the hospital for another battery of tests. If this is what is wrong, she may finally receive the treatment she needs to get well again. In the meantime, it means we start another round of painful tests. I am hopeful about the test results, but apprehensive about another stay in the hospital that has screwed up repeatedly.
Meanwhile, I spent the last month packing everything mom owns and shipping it to California. It should arrive there this week, where Troy/Lon will have them put it in a storage locker next to the one we rent. The cost of the movers was $3000. I still don’t know how we will pay for all of this. In the meantime, we have had to max out the credit cards we were trying to pay off. Sigh.
And, now we have to move the Rabbit Warren too. The location we are in is not disability accessible nor large enough to accommodate what will be a five adults and one part time child next fall (hopefully full time child someday soon). My mom will be living with us, as well as my niece Alura (who will be going to college at the Art Institute in San Francisco). So we will have nearly twice as much space need but do not have twice as much money! Please be on the look out for a 5+ bedroom house to rent or buy in the East Bay. We could also use your energy sent for good fortune for us. Please, prosperity and healing spells/prayers are desperately requested!
Several friends have asked what I need… I need you to be good to yourselves and each other. I love you and am not able to be there for you. Help Lon and Troy if you can. They have been saddled with a lot emotionally, physically and financially right now. In addition to missing me and taking up my tasks at home, Tina has also been blocking Rowan’s visitation again. We are going to have to find a lawyer quickly. We also believe she has gone off her medication again, which means Rowan is in danger. Please send your blessings for his safety, happiness and swift return to us.
I could use email from folks catching me up on your lives. I feel so disconnected from my life, that hearing about yours would be very welcome. I may not be able to answer them, but I do read and appreciate the mail I have gotten. My sisters were here for a week – which was so healing for me. And my Aunt Dee and Uncle Jim have been kind and supportive. (I am staying in their den now.) But I am lonely and tired. I call home every day (sometimes more than once). I am just not use to being isolated and I really don’t have the time/energy to make new friends here even though people have been nice.
Well, it is late and I must get up early. I will try to write more later. Please write me.
Mary is doing better than when I arrived, but not well yet. Every day here has been a struggle – with doctors, nurses and other “health care professionals” who don’t listen. I have actually fired a nurse, a tech, a doctor and a physical therapist from my mother’s care in this time period. At once point a person who was suppose to be helping clean my mother, actually assaulted her. My mom was trying to roll over so that the woman could wash her back. The woman was rude and impatient, first verbally, but then she physically shoved mom at her waist area. When my mother screamed in pain, the woman then had the nerve to yell at her saying that “there were people in worse pain” than her. I was a witness to this and was so angry I told her supervisor that I would have the woman charged with assault if she ever came near my mom again. Turns out the spot she shoved was where mom’s gall-bladder was. Within 24-hours my mom was on a respirator and dialysis and they were telling me she probably would not live. That was a month ago.
Last week a doctor at the rehab place had the nerve to tell mom that being sick was all her own fault because she is fat. I called him thinking he could not really have meant that and he was worse than mom even described. I went directly to the rehab director and we had a new doctor within the hour.
These are only two of dozens and dozens of times I have had to intervene for mom. I am angry and disgusted with much of the “care” she has received. Though some are worse than others, even some of the “nice” ones treat my mother as if she were wining and it is all in her head. They don’t believe me when I explain that she actually has a very high pain threshold and that if she says the pain is unbearable, it is.
There have been some good ones, but I am exhausted. Seeing my mom in almost constant pain for so long, having to fight the system for her care, dealing with the financial crisis this has created for us, and the work of packing and moving everything she owns – all without my support system – I just don’t know how I am still standing some days. But how could I not? Mary is so amazingly strong and so loving, I can’t imagine being anywhere but her side when she needs me so badly. She is my hero. This woman they think is weak. They wouldn’t believe everything she has been through. I am amazed by all she has survived and all she has accomplished so far. And I want more. I want at least another 20 years with her. I need it.
She has healed from most of the complications of her stay in the hospital – bleeding ulcer, blood clot in the heart, removal of a diseases gall bladder, muscle atrophy from prolonged confinement to a bed, hundreds of bruises and punctures from bruises and mishandling. She has had so many xrays she probably glows in the dark. A stack so large and thick that I could barely pick it up (that is after I had to fight with the hospital to get them so that the new doctor at rehab could see them). But her original complaint remains. She has intense, sharp back pain that is so bad she turns pale, cold and clammy if she moves, let alone tries to sit up.
The new doctor (who has actually listed to us) thinks she has found the answer. Something the hospital tested for but didn’t follow up on. Mary has an infection, probably in her spine/backbone. In the morning, we have to go back to the hospital for another battery of tests. If this is what is wrong, she may finally receive the treatment she needs to get well again. In the meantime, it means we start another round of painful tests. I am hopeful about the test results, but apprehensive about another stay in the hospital that has screwed up repeatedly.
Meanwhile, I spent the last month packing everything mom owns and shipping it to California. It should arrive there this week, where Troy/Lon will have them put it in a storage locker next to the one we rent. The cost of the movers was $3000. I still don’t know how we will pay for all of this. In the meantime, we have had to max out the credit cards we were trying to pay off. Sigh.
And, now we have to move the Rabbit Warren too. The location we are in is not disability accessible nor large enough to accommodate what will be a five adults and one part time child next fall (hopefully full time child someday soon). My mom will be living with us, as well as my niece Alura (who will be going to college at the Art Institute in San Francisco). So we will have nearly twice as much space need but do not have twice as much money! Please be on the look out for a 5+ bedroom house to rent or buy in the East Bay. We could also use your energy sent for good fortune for us. Please, prosperity and healing spells/prayers are desperately requested!
Several friends have asked what I need… I need you to be good to yourselves and each other. I love you and am not able to be there for you. Help Lon and Troy if you can. They have been saddled with a lot emotionally, physically and financially right now. In addition to missing me and taking up my tasks at home, Tina has also been blocking Rowan’s visitation again. We are going to have to find a lawyer quickly. We also believe she has gone off her medication again, which means Rowan is in danger. Please send your blessings for his safety, happiness and swift return to us.
I could use email from folks catching me up on your lives. I feel so disconnected from my life, that hearing about yours would be very welcome. I may not be able to answer them, but I do read and appreciate the mail I have gotten. My sisters were here for a week – which was so healing for me. And my Aunt Dee and Uncle Jim have been kind and supportive. (I am staying in their den now.) But I am lonely and tired. I call home every day (sometimes more than once). I am just not use to being isolated and I really don’t have the time/energy to make new friends here even though people have been nice.
Well, it is late and I must get up early. I will try to write more later. Please write me.
