Everybody makes mistakes--like the cashier giving the wrong change, customer service representatives saying "no" when they should have said "yes," an accountant telling you about a refund when instead you owe the IRS. But a caregiver? Aah. That's bad news any time. Don't read any further if the caregiver is your spouse. You, my fine friend, have to deal with it.
So if you're not married to your caregiver, more than likely, it happens from burnout. I'm an expert in knowing when my caregiver is burned out. It didn't happen all at once for me, and it took a while to figure it out--over 4 years with the same caregiver. I'm a slow learner and I have a long fuse--bad combination, for sure.
That person didn't understand stroke survivors who, especially during the first few years, are angry, frustrated, hard to please. But I am peaceful now--with that person not screaming hysterically at me, shattering a glass-topped table, generally going ape-shit on me from time to time. That person is probably at peace, too, without me. There's nothing better than peace of mind. The pattern is the thing. Everybody is allowed mistakes randomly as long as it doesn't become a pattern.
Your caregiver's intentions may not be so overt--subtle even, but the burnout is there if you look for it with my favorite top ten, the list assembled by actual stroke survivors across America to my question: do you have problems with your caregivers? I saved the stories, knowing that one day I would publish them. All but one didn't give the caregivers the keys to his or her place. The names have been changed--not the cities or genders--to protect the survivors, not the caregivers. Just remember, if it's a pattern, there is always someone else to fill the shoes.
BEING LATE ALL THE TIME
When Renee from Philadelphia, Pennsylvania, said come at 8, that number wasn't arbitrary. She based it on her schedule. For cryin' out loud, you decide when the caregiver should come for any reason, even if you don't have appointments. Let's say you're having a crappy day and all you want is company. Then it's the caregiver's job to do that, too. Renee put up with so many excuses: the dog ate the schedule, I thought it was Sunday, my roommate moved my car and I thought it was stolen. Sheesh. Renee finally had enough.
WATCHING TELEVISION RATHER THAN THE SURVIVOR
I've heard from people all over the world and sometimes, this event happens. The awful story came from a lady in Omaha, Nebraska. The caregiver was watching "The Price Is Right" and Lucy was choking on her lunch. Lucy made a gagging sound, which the caregiver heard, because she put up her index finger to indicate, "Wait a minute." The caregiver was waiting to see who would win the "grand prize."
Lucy was able to call the paramedics with her "Life Alert" button and then passed out from lack of air. Did you ever hear the "Life Alert" button activated? It's goddamn loud. Still no response from the caregiver. The paramedics came in 5 minutes when the dispatcher got no response while still connected, but the caregiver wanted to watch the news right after, so she was surprised to see the paramedics. Lucy recovered after being taken to the hospital by ambulance. The caregiver was fired on the spot by the family a few hours later. I mean, WTF!
SNOOPING
From Los Angeles, California, come this email from Charles. He thought his caregiver was snooping around because Charles has an excellent memory. At first, Charles began to second guess himself. He thought it was his imagination getting the better. Maybe the papers were scattered about originally, maybe my checkbook wasn't in the place I remembered. But when he came into the living room rather than going to the bathroom, he saw his caregiver looking at his tax return. He went ballistic and his firing her didn't take long at all.
ASKING TO USE YOUR SHOWER
Helena from New York knew her caregiver moved around a lot, going from client to client. This one time, Helena opened the door and her caregiver looked like she had been in a bar fight. She had dried blood on her cheek and various scratches and open sores on the arms. She stopped at the entrance to her apartment and asked Helena if she could use her shower because she wanted to "clean up." The caregiver had just come from a violent Alzheimer's client. Helena waited a few moments until sensibility ruled, and then said, "Come back when you use your shower." Spoken like a true New Yorker. Three cheers for Helena!
FALLING ASLEEP
Why do you have caregivers? That's an easy one. You need help; caregivers provide it. So it surprised Dan, who had a 2 bedroom apartment and 24-hour care for a week when he first returned from the hospital, that when he called out for his caregiver at 3am to assist him in going to the bathroom, no answer was what he got. After three times, he shouted her name. Still no answer. He somehow transferred to the wheelchair in a sweat because he really had to go and went to her room. She was in a fetal position, sound asleep. Dan, who was not a lunatic, moved his wheelchair next to her ear, and screamed, "MARY!"
She got up and took him, right in time, to the bathroom, and after he was finished, he called for her. Mary said she was offended that a male, meaning Dan, came into her room. Forget the fact that if Dan went to the bathroom by himself, he could have cracked his head open on the tile floor. Mary came three more times, but Dan noticed a change in her attitude, because now, she had an attitude. Dan had the locks changed on his house and phoned Mary not to come anymore. She asked why? Seriously?
FORGETTING THE SOAP
No soap. Radio. Those old enough to remember that punch line in the 70's with a monkey joke in front of it was used to determine if people would laugh at anything. And some did. Finally, most would eventually laugh out loud at the absurdity of it all. This email came from Barbara in Jacksonville, Florida, wasn't as funny. She lives in an apartment and had a bowel accident just an hour before the caregiver came. Once the caregiver arrived, she cleaned Barbara up and got her in the shower. She went to do the wash three floors below and said she'd be "right back."
But the caregiver had to wait until a washer was free and the wait was about fifteen minutes. So she decided, poor judgement in place, to wait until the washer was freed up. Meanwhile, when Barbara, 3 floors above, spotted the washcloth in the shower, no soap. She had to wait, with the water running, 15 minutes until her caregiver returned.
"Are you finished?" her caregiver wanted to know. Barbara said she had no soap. "Water will do just as well," said the caregiver, when both Barbara and the caregiver knew it wasn't true. Barbara gave her a few more chances, with her caregiver repeating major errors like the no soap one, and then she had to let the caregiver go. If it's not right, exclaimed Barbara, I don't want to deal with it. It's my dime! Good for you, Barbara!
GIVING YOU THE CAREGIVER'S MEDICINE INSTEAD OF YOUR OWN
Claire in Richmond, Virginia, sent me an email that wasn't humorous in the least. She said her caregiver had trouble when to take her own medicine, so she took them whenever Claire took her own. One day, she gave Claire the caregiver's own pills. When the caregiver realized it, she immediately stopped. The pills were for constipation and acid reflux. Claire had acid reflux so that pill didn't harm her, but Claire also had loose bowels, the aftermath of a stomach virus. When she took the caregiver's medicine for constipation, Claire had the "runs" for 2 days straight. She wondered how often the caregiver, who had anxiety from a long time before, did that same process? She ended her employment because Claire didn't want to wonder anymore. At least, it gave her the "runs" for 2 days. What if it had been stronger drugs, like Predisone, a steroid, or Coumadin, a blood thinner. What Claire learned was to look at her pills and recognize them by sight instead of her caregiver shoving them in her mouth.
CONSTANTLY COMPLAINING
This email came from Ben in San Fransisco, California. Every time this caregiver would come, once she walked in the door, her complaints were never-ending. "The mail didn't come until 4pm," "I have a blister on my foot," "my cat is sick again." And after each complaint came the details, long and drawn out. But one time, Ben said, when he couldn't take it anymore, she asked to switch the days around because blah, ba-blah, ba-blah. Ben tuned her out. He could have agreed, but he didn't. He said that Tuesday wasn't good for him. A little white lie didn't hurt anyone. Eventually, not too long after, the caregiver went to work for another person full-time and Ben didn't have to listen to her "dramatic sagas" (his words, not mine) anymore. That, indeed, was a win-win situation.
UNMERCIFULLY CAN'T SHUT UP
Elaine in Dallas, Texas, writes that she couldn't get her caregiver to be quiet once in a while. Elaine has a good memory, and she gives the hand-writtten schedule to the caregiver. But still, the caregiver talks non-stop. Elaine asks, "Should I say something?" Damn right, you should say something! If it's bothering you, don't let it. You're in charge, remember? http://stroketales.blogspot.com/2015/10/3-things-you-have-to-remember-about.html
Once in a while, I'll say, "Dome of silence, ok?" to my caregivers and that is a signal that I want to think for a while. It's better than "Can you shut up?" or "Close your trap."
MANIPULATING IN DOING THINGS HER WAY
And finally, this one is from me, coming to you straight from Pittsburgh, Pennsylvania. I used to have a caregiver who pushed my button once too many, manipulating me in doing things her way. When we were going home, and instead of stopping at my place, she said that she had to go meet her son at the mechanic's shop. Since I was new in town, I didn't know all the towns, but it was 20 minutes one-way out of my way for the meetup. She took her 20-something son home and I got home three-quarters of an hour after I should have, and I had to pay her for her time.
The clincher came when she used to not bring my wheelchair along, saying it was good to walk. But when I'm over the limit, nothing overcomes fatigued muscles, as a physical therapist told me later. When she knew I couldn't go on, she changed the subject and talked about something else as I slogged my way around the store. After the third time, I said she was through, to which she replied, "That's discrimination! I have a condition." That was the first time I heard of her supposed and mysterious condition, but I'd love it if she sued me, me in a wheelchair and her on her feet. The judge would laugh himself silly.
So that's why I have 3 caregivers now, each one spending a visit for doctor's appointments, food shopping, pharmacy visits, to assist me on the stationary bike, and give me a shower, for instance. I elevated their status to personal assistant, which they really are, so if they make calls on my behalf, they can say, "This is Joyce's personal assistant" instead of Joyce's caregiver which often gets confused with caretaker, but that is a story for another day.
In America, there is a website called http://www.care.com where you can find all sorts of care, even for pets! The point is, there are plenty of caregivers, or if you prefer, personal assistants, out there. The only trick is finding the right ones. After a year of searching, I have 3 great ones. Don't think you'll get lucky, even though maybe you will, and find them right away.
Maybe I'll do this again with a new batch of stories. The question is: do you have problems with your caregivers?
That person didn't understand stroke survivors who, especially during the first few years, are angry, frustrated, hard to please. But I am peaceful now--with that person not screaming hysterically at me, shattering a glass-topped table, generally going ape-shit on me from time to time. That person is probably at peace, too, without me. There's nothing better than peace of mind. The pattern is the thing. Everybody is allowed mistakes randomly as long as it doesn't become a pattern.
Your caregiver's intentions may not be so overt--subtle even, but the burnout is there if you look for it with my favorite top ten, the list assembled by actual stroke survivors across America to my question: do you have problems with your caregivers? I saved the stories, knowing that one day I would publish them. All but one didn't give the caregivers the keys to his or her place. The names have been changed--not the cities or genders--to protect the survivors, not the caregivers. Just remember, if it's a pattern, there is always someone else to fill the shoes.
BEING LATE ALL THE TIME
When Renee from Philadelphia, Pennsylvania, said come at 8, that number wasn't arbitrary. She based it on her schedule. For cryin' out loud, you decide when the caregiver should come for any reason, even if you don't have appointments. Let's say you're having a crappy day and all you want is company. Then it's the caregiver's job to do that, too. Renee put up with so many excuses: the dog ate the schedule, I thought it was Sunday, my roommate moved my car and I thought it was stolen. Sheesh. Renee finally had enough.
WATCHING TELEVISION RATHER THAN THE SURVIVOR
I've heard from people all over the world and sometimes, this event happens. The awful story came from a lady in Omaha, Nebraska. The caregiver was watching "The Price Is Right" and Lucy was choking on her lunch. Lucy made a gagging sound, which the caregiver heard, because she put up her index finger to indicate, "Wait a minute." The caregiver was waiting to see who would win the "grand prize."
Lucy was able to call the paramedics with her "Life Alert" button and then passed out from lack of air. Did you ever hear the "Life Alert" button activated? It's goddamn loud. Still no response from the caregiver. The paramedics came in 5 minutes when the dispatcher got no response while still connected, but the caregiver wanted to watch the news right after, so she was surprised to see the paramedics. Lucy recovered after being taken to the hospital by ambulance. The caregiver was fired on the spot by the family a few hours later. I mean, WTF!
SNOOPING
From Los Angeles, California, come this email from Charles. He thought his caregiver was snooping around because Charles has an excellent memory. At first, Charles began to second guess himself. He thought it was his imagination getting the better. Maybe the papers were scattered about originally, maybe my checkbook wasn't in the place I remembered. But when he came into the living room rather than going to the bathroom, he saw his caregiver looking at his tax return. He went ballistic and his firing her didn't take long at all.
ASKING TO USE YOUR SHOWER
Helena from New York knew her caregiver moved around a lot, going from client to client. This one time, Helena opened the door and her caregiver looked like she had been in a bar fight. She had dried blood on her cheek and various scratches and open sores on the arms. She stopped at the entrance to her apartment and asked Helena if she could use her shower because she wanted to "clean up." The caregiver had just come from a violent Alzheimer's client. Helena waited a few moments until sensibility ruled, and then said, "Come back when you use your shower." Spoken like a true New Yorker. Three cheers for Helena!
FALLING ASLEEP
Why do you have caregivers? That's an easy one. You need help; caregivers provide it. So it surprised Dan, who had a 2 bedroom apartment and 24-hour care for a week when he first returned from the hospital, that when he called out for his caregiver at 3am to assist him in going to the bathroom, no answer was what he got. After three times, he shouted her name. Still no answer. He somehow transferred to the wheelchair in a sweat because he really had to go and went to her room. She was in a fetal position, sound asleep. Dan, who was not a lunatic, moved his wheelchair next to her ear, and screamed, "MARY!"
She got up and took him, right in time, to the bathroom, and after he was finished, he called for her. Mary said she was offended that a male, meaning Dan, came into her room. Forget the fact that if Dan went to the bathroom by himself, he could have cracked his head open on the tile floor. Mary came three more times, but Dan noticed a change in her attitude, because now, she had an attitude. Dan had the locks changed on his house and phoned Mary not to come anymore. She asked why? Seriously?
FORGETTING THE SOAP
No soap. Radio. Those old enough to remember that punch line in the 70's with a monkey joke in front of it was used to determine if people would laugh at anything. And some did. Finally, most would eventually laugh out loud at the absurdity of it all. This email came from Barbara in Jacksonville, Florida, wasn't as funny. She lives in an apartment and had a bowel accident just an hour before the caregiver came. Once the caregiver arrived, she cleaned Barbara up and got her in the shower. She went to do the wash three floors below and said she'd be "right back."
But the caregiver had to wait until a washer was free and the wait was about fifteen minutes. So she decided, poor judgement in place, to wait until the washer was freed up. Meanwhile, when Barbara, 3 floors above, spotted the washcloth in the shower, no soap. She had to wait, with the water running, 15 minutes until her caregiver returned.
"Are you finished?" her caregiver wanted to know. Barbara said she had no soap. "Water will do just as well," said the caregiver, when both Barbara and the caregiver knew it wasn't true. Barbara gave her a few more chances, with her caregiver repeating major errors like the no soap one, and then she had to let the caregiver go. If it's not right, exclaimed Barbara, I don't want to deal with it. It's my dime! Good for you, Barbara!
GIVING YOU THE CAREGIVER'S MEDICINE INSTEAD OF YOUR OWN
Claire in Richmond, Virginia, sent me an email that wasn't humorous in the least. She said her caregiver had trouble when to take her own medicine, so she took them whenever Claire took her own. One day, she gave Claire the caregiver's own pills. When the caregiver realized it, she immediately stopped. The pills were for constipation and acid reflux. Claire had acid reflux so that pill didn't harm her, but Claire also had loose bowels, the aftermath of a stomach virus. When she took the caregiver's medicine for constipation, Claire had the "runs" for 2 days straight. She wondered how often the caregiver, who had anxiety from a long time before, did that same process? She ended her employment because Claire didn't want to wonder anymore. At least, it gave her the "runs" for 2 days. What if it had been stronger drugs, like Predisone, a steroid, or Coumadin, a blood thinner. What Claire learned was to look at her pills and recognize them by sight instead of her caregiver shoving them in her mouth.
CONSTANTLY COMPLAINING
This email came from Ben in San Fransisco, California. Every time this caregiver would come, once she walked in the door, her complaints were never-ending. "The mail didn't come until 4pm," "I have a blister on my foot," "my cat is sick again." And after each complaint came the details, long and drawn out. But one time, Ben said, when he couldn't take it anymore, she asked to switch the days around because blah, ba-blah, ba-blah. Ben tuned her out. He could have agreed, but he didn't. He said that Tuesday wasn't good for him. A little white lie didn't hurt anyone. Eventually, not too long after, the caregiver went to work for another person full-time and Ben didn't have to listen to her "dramatic sagas" (his words, not mine) anymore. That, indeed, was a win-win situation.
UNMERCIFULLY CAN'T SHUT UP
Elaine in Dallas, Texas, writes that she couldn't get her caregiver to be quiet once in a while. Elaine has a good memory, and she gives the hand-writtten schedule to the caregiver. But still, the caregiver talks non-stop. Elaine asks, "Should I say something?" Damn right, you should say something! If it's bothering you, don't let it. You're in charge, remember? http://stroketales.blogspot.com/2015/10/3-things-you-have-to-remember-about.html
Once in a while, I'll say, "Dome of silence, ok?" to my caregivers and that is a signal that I want to think for a while. It's better than "Can you shut up?" or "Close your trap."
MANIPULATING IN DOING THINGS HER WAY
And finally, this one is from me, coming to you straight from Pittsburgh, Pennsylvania. I used to have a caregiver who pushed my button once too many, manipulating me in doing things her way. When we were going home, and instead of stopping at my place, she said that she had to go meet her son at the mechanic's shop. Since I was new in town, I didn't know all the towns, but it was 20 minutes one-way out of my way for the meetup. She took her 20-something son home and I got home three-quarters of an hour after I should have, and I had to pay her for her time.
The clincher came when she used to not bring my wheelchair along, saying it was good to walk. But when I'm over the limit, nothing overcomes fatigued muscles, as a physical therapist told me later. When she knew I couldn't go on, she changed the subject and talked about something else as I slogged my way around the store. After the third time, I said she was through, to which she replied, "That's discrimination! I have a condition." That was the first time I heard of her supposed and mysterious condition, but I'd love it if she sued me, me in a wheelchair and her on her feet. The judge would laugh himself silly.
In America, there is a website called http://www.care.com where you can find all sorts of care, even for pets! The point is, there are plenty of caregivers, or if you prefer, personal assistants, out there. The only trick is finding the right ones. After a year of searching, I have 3 great ones. Don't think you'll get lucky, even though maybe you will, and find them right away.
Maybe I'll do this again with a new batch of stories. The question is: do you have problems with your caregivers?
Important information that you won't find in a book.
ReplyDeleteRebecca, all those people including me! It's a tough world out there! And no, you won't this important information in any book. Thanks for your comment.
ReplyDeleteI can relate to these so much . I stay in India and some from a very small town with minimal infrastructure. My father had a severe stroke last year . Getting a trained care giver in such a town is very difficult . yet I tried a lot to get someone who could help us with my paralyzed father right after he was out from the hospital. i remember the first day I got a house nurse. She created such a nuance that I asked her to leave on the very first day . She wanted us to serve food for her , bring her cold water and give her a bed to sleep on . It was out first day with dad at home, we were absolutely clueless how to help him . She was so inconsiderate that she yelled at my father who was not cooperating with her . When i went to check on him , i found that she had pulled out his ryles tube from his nose . She started arguing with me that she was not being taken care of . I got so pissed off that I was in tears. Sternly , I asked her to leave my house.
ReplyDeleteNice video. Thank you for the information. We are provide rehabilitation for stroke patient. we are using two method which is combination of physiotherapy treatment and acupuncture. For further information can call us at 0124520077
ReplyDeletePersonal assistants/caregivers who are spouses are very much like stroke survivors as there is no break grom the 24 hour reality of it all. We try to understand and respond in the best possible way, knowing we can't possibly do all thst needs to be done, perfectly , no less. While living with our new normal, there are times I am hurt, tired, overwhelmed, scared and misunderstood. And, the beat goes on. I remind myself that's what we want, to live and love, to grow and learn, to be a part of the world. Communication is everything!
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