My frustration with the state provided caregivers is never ending.
In 3 weeks I have been given 4 different caregivers from one agency.
The first one came and stayed ofr one hour.
Number2 was from Somalia and had a very noisy car that pooped out on the 2nd visit-she did accomplish quite a lot-taking off the closet doors and leaving them out on the deck, exposed to the elements.
Number 3 came for 6 hours one day-she proceeded to treat me lie a not very bright 2 year old-what can I expect from agencies?-they either treat me like I'm senile or mentally delayed.
She checked out my library books for me-something I'm usually do -along with following me around the library and carrying every book I pulled out to just look at...frustrating.
In the car she adjusted the seat to what she thought was a proper seating position for me (too upright and too close to the dash)-then fastened the seatbelt too snugly.
Way too much attention and care.
Number 4 is pregnant, on food stamps, has a 2 year old and a husband.
Keeps asking me if i'm all right, can you lift that?-let me lift that...finally I broke loose-please stop asking me if I'm all right-I'll ask for your help when I want it-do not ask me if I'm sure I can eat all that watermelon or if I'm sure I want to buy whatever expensive item I'm looking at in Costco.
I'm sick of being second guessed-
Money-it's mine-you do NOT have ANY say in how or where I choose to spend.
Or not.
Care-do not write me down as refused. This is consumer directed care-not follow the care assessment.
Saturday, July 28, 2012
Sunday, October 16, 2011
Lots going
Been a while since I wrote-spent a whole month in the hospital...first a cat scratch made my whole hand swell up and it had to be drained.
No one ever told me that being on dialysis would give me an impaired immune system. I'm always as healthy as the proverbial horse. Now this month-I'm sick. I was out of the hospital for ONE week, during which I was supposed to accomplish-all the tests for the renal transplant (takes months) and reorder the next month home delivery of supplies from Baxter or, as the kidney center said-if you're late again we'll make you go pick them up yourself.
Like I don't have a car-did anyone think that just because you're released that doesn't mean you are instantly strong and well?
Yes,, of course I'm like Charles Atlas, the skinny guy with big muscles and superwoman, too. For the last 2 weeks of the month, I go back in to be sick-a high potassium level and a gall bladder stones attack-but by now my body is under too much stress to heal normally.
And I'm so anemic from all these twice daily blood draws I can barely put one foot in front of the other without falling over. My skin tone evenly matches my cream colored shirts-so nice not to have to figure what coordinates anymore-I can be one uniform shade-grey and white go together, right?
The Great State of Washington has enrolled me in their New Freedom Medicaid Waiver Program because of my End Stage Renal Disease. This is supposed to be consumer directed care wherein the participants are given a budget with the freedom to spend dollars on what services they need. So far I have had one very invasive and over-assuming, insulting interview with a home care agency, in which they assumed that the reason I was on the program was because my incontinence and unwillingness to admit the need for assistance, that I needed a full transfer assist because of my unsteady balance and tremor,(along with all the adaptive equipment) help in turning over in bed ( now tell me again exactly how to help a person who does their own self care why all these assists are necessary)
Last but not, least, do I really need to pursue the care agency's insistence on cutting up my meat and other food items and pureeing my food- No, since I am responsible for paying these people $300/month, I want an itemized list of the what they actually do-not what they think is necessary for me. I am a fully functioning adult, who is actually capable of carrying on my own life without their help. What i need now is due to physical weakness. I need help with laundry, loading and unloading the dishwasher, tearing down the boxes and recycling them for the garbage along with taking down the other used dialysis equipment to the garbage.
The home care aid is supposed to take me shopping once a week-not do my shopping for me with my cash leaving me at home. After 6 weeks, I have yet to see a home care aide. Supposedly one is coming for a Meet 'n Greet for one hour on Thursday. I don't know what she can do in one hour-maybe run up and down the stairs with the broken down boxes a few times?
No one ever told me that being on dialysis would give me an impaired immune system. I'm always as healthy as the proverbial horse. Now this month-I'm sick. I was out of the hospital for ONE week, during which I was supposed to accomplish-all the tests for the renal transplant (takes months) and reorder the next month home delivery of supplies from Baxter or, as the kidney center said-if you're late again we'll make you go pick them up yourself.
Like I don't have a car-did anyone think that just because you're released that doesn't mean you are instantly strong and well?
Yes,, of course I'm like Charles Atlas, the skinny guy with big muscles and superwoman, too. For the last 2 weeks of the month, I go back in to be sick-a high potassium level and a gall bladder stones attack-but by now my body is under too much stress to heal normally.
And I'm so anemic from all these twice daily blood draws I can barely put one foot in front of the other without falling over. My skin tone evenly matches my cream colored shirts-so nice not to have to figure what coordinates anymore-I can be one uniform shade-grey and white go together, right?
The Great State of Washington has enrolled me in their New Freedom Medicaid Waiver Program because of my End Stage Renal Disease. This is supposed to be consumer directed care wherein the participants are given a budget with the freedom to spend dollars on what services they need. So far I have had one very invasive and over-assuming, insulting interview with a home care agency, in which they assumed that the reason I was on the program was because my incontinence and unwillingness to admit the need for assistance, that I needed a full transfer assist because of my unsteady balance and tremor,(along with all the adaptive equipment) help in turning over in bed ( now tell me again exactly how to help a person who does their own self care why all these assists are necessary)
Last but not, least, do I really need to pursue the care agency's insistence on cutting up my meat and other food items and pureeing my food- No, since I am responsible for paying these people $300/month, I want an itemized list of the what they actually do-not what they think is necessary for me. I am a fully functioning adult, who is actually capable of carrying on my own life without their help. What i need now is due to physical weakness. I need help with laundry, loading and unloading the dishwasher, tearing down the boxes and recycling them for the garbage along with taking down the other used dialysis equipment to the garbage.
The home care aid is supposed to take me shopping once a week-not do my shopping for me with my cash leaving me at home. After 6 weeks, I have yet to see a home care aide. Supposedly one is coming for a Meet 'n Greet for one hour on Thursday. I don't know what she can do in one hour-maybe run up and down the stairs with the broken down boxes a few times?
Thursday, September 22, 2011
The Beginning of a New Lifestyle
For my first blog, I want to say that I started PD just a little over a month ago. I knew that dialysis was coming and I had made my choice to use fluid exchange instead of blood exchange(hemodialyis) to cleanse my body, no one ever explained just how much disruption it could cause in my life.
First there was the simple operation to create a catheter-an operation that took one afternoon and in which I also gained part of a hemodialysis access point-a fistula. Pain.
Two days later, the pain increasing and my ability to breathe decreasing, I end up in the hospital with aspiration pneumonia( meaning that I breathed something in that wasn't air and most likely was liquid) That meant an emergency reversal of the closed peritoneal catheter in my my belly-an incision that was supposed to heal for a minimum of two weeks instead was reopened and used within 2 days, as my kidneys failed.
I was starting to have trouble formulating my thoughts and speaking from kidney failure-like I would look at a word and not be able to remember what it stood for- never mind what it was-such as, what is coffee? Do I like this this-eat his-drink this? Also I was so drowsy and un-wakeable that I would be seeing in my mind's eye images of people and places long gone and forgotten and I just couldn't wake up-like a nightmare that goes on and on-only you know it can't be real and you can't be there physically. Most of my memory returned after only about a week of dialysis-I did feel better. And no, dialysis doesn't hurt. But filling and draining the liquid into your abdomen sometimes does
. At first, while I used small amounts of liquid(about 500 cc) I could still feel a sloshing when I filled my abdomen and when the fluid( saline and sugar water) moved with my movement, my stomach would rebel and return whatever contents were left from the previous meal.
I have insulin dependent diabetes type 1, the kind that always requires insulin. I have lots of complications from 40 years of diabetes, for which I wear an insulin pump.
In the beginning-for about 2 days after I got out of the hospital, I did manual exchanges-where an IV bag is hung from a pole and another laid on the ground in a closed system-fluids are drained from your body into the spare bag by gravity and the remaining fluid from the IV bag on the pole is then drained into your abdomen.
Still in the same week,, I moved on to APD,(automatic peritoneal dialysis) a type of peritoneal dialysis where you are dependent on a machine called a cycler-to do your exchanges-the fills and drains of dialysis for hours each night.
A lot of learning from the kidney center that I go to-and I was still confused from not having kidneys that work properly, so it made absorbing new material hard.
First there was the simple operation to create a catheter-an operation that took one afternoon and in which I also gained part of a hemodialysis access point-a fistula. Pain.
Two days later, the pain increasing and my ability to breathe decreasing, I end up in the hospital with aspiration pneumonia( meaning that I breathed something in that wasn't air and most likely was liquid) That meant an emergency reversal of the closed peritoneal catheter in my my belly-an incision that was supposed to heal for a minimum of two weeks instead was reopened and used within 2 days, as my kidneys failed.
I was starting to have trouble formulating my thoughts and speaking from kidney failure-like I would look at a word and not be able to remember what it stood for- never mind what it was-such as, what is coffee? Do I like this this-eat his-drink this? Also I was so drowsy and un-wakeable that I would be seeing in my mind's eye images of people and places long gone and forgotten and I just couldn't wake up-like a nightmare that goes on and on-only you know it can't be real and you can't be there physically. Most of my memory returned after only about a week of dialysis-I did feel better. And no, dialysis doesn't hurt. But filling and draining the liquid into your abdomen sometimes does
. At first, while I used small amounts of liquid(about 500 cc) I could still feel a sloshing when I filled my abdomen and when the fluid( saline and sugar water) moved with my movement, my stomach would rebel and return whatever contents were left from the previous meal.
I have insulin dependent diabetes type 1, the kind that always requires insulin. I have lots of complications from 40 years of diabetes, for which I wear an insulin pump.
In the beginning-for about 2 days after I got out of the hospital, I did manual exchanges-where an IV bag is hung from a pole and another laid on the ground in a closed system-fluids are drained from your body into the spare bag by gravity and the remaining fluid from the IV bag on the pole is then drained into your abdomen.
Still in the same week,, I moved on to APD,(automatic peritoneal dialysis) a type of peritoneal dialysis where you are dependent on a machine called a cycler-to do your exchanges-the fills and drains of dialysis for hours each night.
A lot of learning from the kidney center that I go to-and I was still confused from not having kidneys that work properly, so it made absorbing new material hard.
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