Thoughts keep flooding my mind tonight and often the best way to rid myself of them is to write, so even though it’s late and I still have things to do for Mom, I’ve decided to post. Besides that, I said I’d tell you about the life, thoughts, and feelings of a caregiver and what I’m experiencing tonight is a prime example.
I’m exhausted. Every little task that has to be done seems monumental. I’m starving, but really don’t have the energy, even the incentive, to fix something to eat. Every joint and muscle in my body aches and burns, even my hands. I’ve taken my old friend Advil and as much as it helps, it can’t do miracles. It’s well after 11 PM and I’ve taken her vitals and checked her oxygen levels, given her meds, reloaded the pump with a fresh bag of formula and flushed her feeding tube, done her mouth care and Vaselined her lips, and I should be able to tuck her in and kiss her good night. But I can’t. I just checked and she needs to be changed again before I can call it a night. That’s the biggest, and the hardest job of all and the one that takes the biggest toll.
She had both hips broken three years ago and that left her with contracted legs. As a result, she can only be turned on her left side when doing anything for her. She’s a little bit of nothing, no bigger than a wet bar of soap as my dad would say, but has the strength of two men. I remember once having to call 911 when she got mad and sat down in the middle of the bathroom floor (this was before the hips incident when she was still able to walk) and I could not get her up. I’d tried everything, even let her sit there for almost an hour hoping she’d get over her mad spell, but she was glued to that floor and that was that. A very disgruntled paramedic glared at me when he got here and I told him my problem, I’m sure for bothering them with a non-emergency call for which I humbly apologized, then grabbed her under the arms and tugged. He was about 5’11”, muscle-bound, a big guy. And he couldn’t budge her. His partner arrived about that time and the big guy sheepishly asked him to help. They brought her to her feet, the partner ran and got my computer chair so they could roll her to the recliner, then down the hall they went with her yelling at the top of her lungs and ordering them out of her house. Needless to say, I laughed. They got her to the recliner, the big guy sat her in it, then said to me, “Please tell me you have help with her.” His last words as they went out the door were, “Good luck. I’ll be praying for you.” Now he understood.
It’s not quite that bad now because she’s bedridden, and you would think at my mercy. Don’t kid yourself. She can turn herself into a lump of lead at will. Dementia seems to arm them with superhuman strength and the strength she possesses, especially considering her fragile health, is amazing. And back-breaking.
Changing her is her least favorite thing and she resists with all her might each and every time. I try to turn up her towards me and she tries to make sure I don’t. The only time there is a chance of that not happening is when her Seroquel has put her into such a deep sleep she really isn’t aware of what I’m doing. That’s what I’m waiting for now.
I’ve had help with her a total of three hours in the last seven days, and seeing to every bath and pants change has worn me down. Two prospective aides came for a meet and greet yesterday, another one today. One of them seems very nice and if she accepts the job, she will probably start Tuesday. On, my, that’s a long way off.
I kissed her as I was pulling her up in bed this morning. “Oh, I love you, Honey.”, she said, almost crying. I told her I loved her, too. “I want you, Honey.”, came next. I kissed her again and told her I wanted her, too, forever and ever, and that was how we’d be, together forever and ever. “All right.”, she said. Then she was fine.
You better bet I’ll find the strength to make it until Tuesday.
Till next time,
Sharon
Saturday, June 5, 2010
Wednesday, June 2, 2010
The Flip Side of Yesterday's Rant
Well, just like I knew I would, I feel the need to say something in defense of some of the aides I ranted about in yesterday’s post. I do it every time. When I say something bluntly or in anger, I always later feel the other person deserves a little understanding because many times there are reasons for most people’s bad behavior. Notice I said most. So, not in their defense, but to give what I think is a fair assessment of the circumstances that may explain some of their behavior, I offer this appeasement.
I also don’t want to give the impression that we’ve not had good aides over the years. We have. There have been some who were wonderful, dedicated caregivers that worked along side me and helped both Mom and me through difficult times. Those aides became like members of the family and I still smile when I think about them. Each and every one of them left because of changes in their lives, not because I asked them to. Three of them went on to bigger and better things and even though I hated losing them, I was proud and happy of what they accomplished. Two of them still call occasionally to say hello and get updates on Mom’s condition. That kind of relationship is what I hope for each and every time a new aide walks through the door. Unfortunately, that hasn’t been the case in a long, long time.
I think one reason the quality of women attracted to the field seems to have changed so is that times are so financially difficult now and people are desperately searching for ways to make a living. Elder care is big business here and there’s never a lack of patients, so a lot of folks gravitate to medically-related fields whether they have a genuine interest or the necessary skills for it or not. I’ve found that most of the problem aides have been single moms trying to feed their children. If they do have a man at home, he doesn’t hold down a job, or he has drug or alcohol problems, sometimes both. Because I’m a sympathetic and empathetic person who has a genuine interest in people, it doesn’t take long before they’re telling me about their lives, their loves, their troubles, their hopes, and it’s almost always the same story. Some of them can stretch a dime further than you and I could ever think of. Others have absolutely no concept of budgeting, or of spending their money on necessities first and then buying the good stuff if anything is left. They’ll complain about not making their bills, and then spend from seven to ten dollars for their lunch. I know. I’ve seen the receipts. But it’s how they were raised, or not raised, so the price of lunch, or anything else for that matter, is not an issue.
What always surprises me is how little they know about cleanliness or how to take care of things. For instance, the garbage disposal. The fact that you really should run water through as you’re using one often comes as a total surprise. One aide was with us for eight months and drove me absolutely insane every working day of those eight months. I actually dreaded Mondays because I knew what I would be for over the next five days. So why did I let her stay that long? Because I felt sorry for her and always felt she had and would have a difficult time being in a place where people would accept her and be good to her. She was 51 years old, mentally and emotionally immature, and had no concept of the world outside of her own. I tried almost every day of those eight months to teach her how to operate the microwave. I had to for fear that if I left her to do it on her own, she’d melt it off the wall. She never learned because she couldn’t remember what she’d been shown the day before, or the day before that. And she went out and bought herself a pressure cooker! Run for the hills! She bit her fingernails and cuticles down to the point of bleeding because it was all she knew how to do. So, like a good mother, I taught her how to file her nails, which took three days, and explained how to care for cuticles. She worked on those hands every spare minute she had and was so proud when they started looking better. She was loud and destructive without meaning to be and I had to watch her like a hawk. She had a definite learning disability, and her vision was so bad that she shouldn’t have been driving so I always had to check Mom over for anything she missed while bathing her. I couldn’t let her feed Mom because she shoveled the food in so fast Mom would gag. And she was always glued to my side. I couldn’t have a moment without her. Lordy, could she talk. I visited the bathroom often just for a moment of peace and quiet.
She was pitiful, a lost soul who was a royal pain in the neck. But she had a big heart and tried so very hard to please, plus she was good to Mom. Because I could see that, and because I sympathized with her so, I let her stay on. But I never left her alone with Mom for more than a second because I knew I could never trust what she’d do in a case of an emergency, or what she might do that would cause an emergency. I say that because once when I was gagging on a pill that went down the wrong way, she told me not to worry because if I passed out, she’d give me a “trach”! Man, did I swallow that pill fast. I think it was the gulp that did it. When I asked her what on God’s earth would even make her think of such a thing and had she been taught how to do it, she said no, but she’d seen it done. That’s when she told me about her years of experience working in hospitals, both emergency and intensive care! Oh, my God! So why did she leave? Are you ready for this? Mom went into the hospital and she committed to a new patient the very next morning because it would cost her money not to and she couldn’t have that. Other aides had taken on temporary patients when Mom was hospitalized but she didn’t think of that. After eight months of aggravation, she bailed at the first sign of trouble. I thanked my lucky stars because I was out of it without having to hurt her feelings…and while Mom and I were still in one piece.
So maybe I bring about a lot of my own problems with aides because I feel sorry for them, or put up with too much for too long, or brag on them too much when they’re still in the try-hard stage, or allow them to get too comfortable. That’s hard for me not to do because they’re in our home every day and I don’t want people to feel uncomfortable here. But all the times I’ve put up with too much simply because of this being-nice-to-people thing of mine doesn’t excuse the ones who really were mean-spirited, or lazy, or dirty, or dishonest, or disrespectful, or had no compassion, or who were expert cons. As in all fields, there are the good and the bad. But this breed of bad should be weeded out because they are going into homes during a very difficult and vulnerable time in someone’s life. When proven complaints are waged against them by a reliable source, they shouldn’t be sent on to new patients. But they are. That needs to change. Enough said.
I won’t be posting for a day or two because I have to devote the few minutes of spare time like the ones I’ve spent on my posts to my other Internet project. Sounds like I know what I’m talking about, doesn’t it? I don’t. Pray for me.
Till next time,
Sharon
I also don’t want to give the impression that we’ve not had good aides over the years. We have. There have been some who were wonderful, dedicated caregivers that worked along side me and helped both Mom and me through difficult times. Those aides became like members of the family and I still smile when I think about them. Each and every one of them left because of changes in their lives, not because I asked them to. Three of them went on to bigger and better things and even though I hated losing them, I was proud and happy of what they accomplished. Two of them still call occasionally to say hello and get updates on Mom’s condition. That kind of relationship is what I hope for each and every time a new aide walks through the door. Unfortunately, that hasn’t been the case in a long, long time.
I think one reason the quality of women attracted to the field seems to have changed so is that times are so financially difficult now and people are desperately searching for ways to make a living. Elder care is big business here and there’s never a lack of patients, so a lot of folks gravitate to medically-related fields whether they have a genuine interest or the necessary skills for it or not. I’ve found that most of the problem aides have been single moms trying to feed their children. If they do have a man at home, he doesn’t hold down a job, or he has drug or alcohol problems, sometimes both. Because I’m a sympathetic and empathetic person who has a genuine interest in people, it doesn’t take long before they’re telling me about their lives, their loves, their troubles, their hopes, and it’s almost always the same story. Some of them can stretch a dime further than you and I could ever think of. Others have absolutely no concept of budgeting, or of spending their money on necessities first and then buying the good stuff if anything is left. They’ll complain about not making their bills, and then spend from seven to ten dollars for their lunch. I know. I’ve seen the receipts. But it’s how they were raised, or not raised, so the price of lunch, or anything else for that matter, is not an issue.
What always surprises me is how little they know about cleanliness or how to take care of things. For instance, the garbage disposal. The fact that you really should run water through as you’re using one often comes as a total surprise. One aide was with us for eight months and drove me absolutely insane every working day of those eight months. I actually dreaded Mondays because I knew what I would be for over the next five days. So why did I let her stay that long? Because I felt sorry for her and always felt she had and would have a difficult time being in a place where people would accept her and be good to her. She was 51 years old, mentally and emotionally immature, and had no concept of the world outside of her own. I tried almost every day of those eight months to teach her how to operate the microwave. I had to for fear that if I left her to do it on her own, she’d melt it off the wall. She never learned because she couldn’t remember what she’d been shown the day before, or the day before that. And she went out and bought herself a pressure cooker! Run for the hills! She bit her fingernails and cuticles down to the point of bleeding because it was all she knew how to do. So, like a good mother, I taught her how to file her nails, which took three days, and explained how to care for cuticles. She worked on those hands every spare minute she had and was so proud when they started looking better. She was loud and destructive without meaning to be and I had to watch her like a hawk. She had a definite learning disability, and her vision was so bad that she shouldn’t have been driving so I always had to check Mom over for anything she missed while bathing her. I couldn’t let her feed Mom because she shoveled the food in so fast Mom would gag. And she was always glued to my side. I couldn’t have a moment without her. Lordy, could she talk. I visited the bathroom often just for a moment of peace and quiet.
She was pitiful, a lost soul who was a royal pain in the neck. But she had a big heart and tried so very hard to please, plus she was good to Mom. Because I could see that, and because I sympathized with her so, I let her stay on. But I never left her alone with Mom for more than a second because I knew I could never trust what she’d do in a case of an emergency, or what she might do that would cause an emergency. I say that because once when I was gagging on a pill that went down the wrong way, she told me not to worry because if I passed out, she’d give me a “trach”! Man, did I swallow that pill fast. I think it was the gulp that did it. When I asked her what on God’s earth would even make her think of such a thing and had she been taught how to do it, she said no, but she’d seen it done. That’s when she told me about her years of experience working in hospitals, both emergency and intensive care! Oh, my God! So why did she leave? Are you ready for this? Mom went into the hospital and she committed to a new patient the very next morning because it would cost her money not to and she couldn’t have that. Other aides had taken on temporary patients when Mom was hospitalized but she didn’t think of that. After eight months of aggravation, she bailed at the first sign of trouble. I thanked my lucky stars because I was out of it without having to hurt her feelings…and while Mom and I were still in one piece.
So maybe I bring about a lot of my own problems with aides because I feel sorry for them, or put up with too much for too long, or brag on them too much when they’re still in the try-hard stage, or allow them to get too comfortable. That’s hard for me not to do because they’re in our home every day and I don’t want people to feel uncomfortable here. But all the times I’ve put up with too much simply because of this being-nice-to-people thing of mine doesn’t excuse the ones who really were mean-spirited, or lazy, or dirty, or dishonest, or disrespectful, or had no compassion, or who were expert cons. As in all fields, there are the good and the bad. But this breed of bad should be weeded out because they are going into homes during a very difficult and vulnerable time in someone’s life. When proven complaints are waged against them by a reliable source, they shouldn’t be sent on to new patients. But they are. That needs to change. Enough said.
I won’t be posting for a day or two because I have to devote the few minutes of spare time like the ones I’ve spent on my posts to my other Internet project. Sounds like I know what I’m talking about, doesn’t it? I don’t. Pray for me.
Till next time,
Sharon
Tuesday, June 1, 2010
As they say, Hello, World.
My name is Sharon Clayton and I am my mother's caregiver, a job that I've dedicated the last eight years of my life to doing. This is my first post, which has been too long in coming, and about a subject I hadn't planned on writing about the first time I introduced myself. But I need to rant today and since this blog is intended to call attention to what the life of a caregiver is like, I'm going for it!
Mother asked two things of me when she started having both mental and health problems: to be her health care advocate and to please, please not put her in a nursing home. Those were fair requests. After all, she's my mother and she's taken care of me one way or the other since the day I was born. Besides that, I love her and taking care of her is my responsibility. I also know from experience that I'll damned well do a better job of it because I love her. She, like anyone else, deserves to be well cared for through end of life. It's called respect, and being humane, and to provide any less is unconscionable. We have gone through more, survived more, and managed to overcome more than I have time to share with you right now. Keeping her here at home where she gets above-average care, love, and understanding is the most important thing in the world to her, and to me. But if I can't find a way to replace income we recently lost, which I will explain at another time, we will lose our small condo and Mother will be forced into a nursing home. She will not survive. Not more than a month. I know that. And she wants more than anything to survive. That's her right.
I've tried to find ways to work from home, which is near impossible. I'll also explain that somewhere down the road. A couple of months back, I finally made the desperate decision to try this blog to generate interest in our plight and to set up an Amazon affiliate site because any little bit will help. I knew it wouldn't be easy because I'm totally illiterate when it comes to computers, but my goodness, what was I thinking? I hate computers. Always have. And I'm not afraid or ashamed to say it. So brace yourself because I'll probably take down Amazon, Google, heck, the whole Internet, before this is over. But, boy, I've tried to conquer it all. Almost collapsed from exhaustion last week because of the work, stress, and pure anguish of trying to do everything I have to do to make it all happen, plus everything else in my life that I’m responsible for. I need help, big time. And that brings me to my rant.
Has anyone out there had to deal with nurses' aides? If so, my heart goes out to you. One of the main reasons I haven't been able to make a living sooner is because that for at least the last two years, I have not had one good, dependable, trustworthy, honest aide to take care of Mom during the day so I have time to keep clean the house (Hahahahaha!) and keep it running, take out the garbage, change the light bulbs, stop the toilet from running, do the laundry, buy the groceries, run the errands, be a vet tech (We have a big, lovable cat.), pay the bills, deal with deliveries and the nurse practitioner and the x-ray tech and the girl who comes to draw blood and Medicare and insurance companies, all the while still doing my part of Mom's daily care: manning the feeding tube, giving medications, dealing with behavior problems, lending an extra hand when the aide needs help. Oh, yeah, and making time to brush my teeth, take a bath (Hahahahaha!) and eat. There’s more, but you get the idea. Oh, one important other thing: make money. Paleeeze! Our home is a zoo and I'm the zookeeper. So having a good aide is of the utmost importance. Unfortunately, solving that problem is at the top of my list of the hardest parts of taking care of a loved one at home. Figures.
So, as fate would have it, and as of shortly before noon today, I am without an aide. I had high hopes for the one who just spent her last morning with us. Since experience has taught me what can go wrong with the aide-me relationship, I thoroughly grilled her when we talked before she came onboard. Did she have her personal life under control? Did she have a babysitter and an alternate should she need one? What were her attitudes about care giving, especially seeing to details? She gave all the right answers and I thought maybe I’d found the one. I guess I should have also asked if she kept her car in good running order and saw to it that she had a spare, and if she was the go-to person when her family or her friends were having problems, or even just wanted to chat, and did she understand that making and returning personal phone calls should be done only during lunch hour, and did she understand that when things run amuck at home, she needs to find solutions after work hours rather than calling me before my alarm goes off to say she has to stay home to take care of things, or to ask to come in long enough to fly through the morning duties with Mom (my description of it and not hers) and then leave...and make the time up later?
Another lesson learned. They all seem to think that if I'm tolerant of those things, even to the slightest degree and only because I hope it will help in getting a full day's work out of them, that it's okay to put their lives and their problems first. It's not. Without mentioning all the previous days off in the few short months she's been here, she left at noon last Monday, didn't make it in at all yesterday, and worked until 11:30 this morning, then announced she was leaving at noon and wouldn't be back until Thursday! No babysitter, which she knew last week was going to be a problem. No forewarning for me. She just won't be here! Needless to say, after a short exchange of words, I told her she didn't have to come back Thursday! Enough is enough. I genuinely liked this person and so did Mom, but I’m tired of being the one who suffers the brunt of her personal problems and often poor planning. So now the search begins, and the training when one is hired. Darn. All I do is lose more valuable time, and grow more weary.
So now, once again, I am on my own. I need groceries and will run out of Mom's Depends by tomorrow night. I'm supposed to be going in next week for a six-month follow-up ultrasound to check on the lump in the center of my right breast, but will have to cancel that. The cat needs to go to the vet for his overdue shots because without them, SPCA will not pick him up and keep him if we have to evacuate due to a hurricane threat. I am now responsible for each and every little, and big, thing that has to be done for Mom, and she is high maintenance. If you're interested and want to take a moment, I explain a little about her condition in About Mother and Me. I am totally housebound, exhausted, and have only one brain cell left. And there's absolutely no one to help. And I am mad! It should not be this difficult to do the right thing and take care of someone you love.
We live in Florida, and I don't know about your state but here aides are only required to take five days "training" (I've actually seen ads for places that offer one-day training!) and then pass a test, which I would love to be privy to, to become certified nurses' aides. They are then hired by staffing agencies, usually as independent contractors, and turned loose on unsuspecting families to do a very important job: see to the care and well-being of the sick and elderly. This last aide caused me no major concerns and I'm fortunate to be working with an agency that follows up on them every now and then, but most don't. They send them in and if you have a problems, they send another one, as long as it's a warm body doing a billable job (Mom's on a Medicaid Waiver program, which pays for the aide). Some of the aides we've had are brand new, some had years of experience, and out of all of them there have only been two who knew the meaning of aspiration and what to do should it happen. How can anyone work with the sick, and especially the elderly, and not know that? I swear they are trained at bathing and bottom washing, and no more. A lot of them do not have the ability to understand important things to do and watch for when caring for someone who's fragile and, if they do, the concern to follow through. I should never have to tell them to freshen her mouth, or offer her something to eat, or turn her and put pillows behind her back, or reassure her when she's frightened, or talk to her when she's trying to make conversation, or give her time to eat without being rushed instead of saying she's not hungry and take the food away simply because she didn't take the bite as quick as they wanted her to. Heck, she’s 90 years old!
Most of them have little or no respect for your home or what's in it. They're messy, sometimes downright unclean, and don't give second thought to cleaning up after themselves, which only creates more work for me. I trusted the last one completely in our home, but we've had many things stolen over time. They've gone through my mail and been on my computer when I was gone. They'll let slip knowledge of something that's kept in a place where they had no business looking. One even used to take naps on my bed after I caught her sleeping on the sofa a couple of times. I guess she figured she had more time to get to her feet when she heard me coming through the door if she was in the bedroom and not the living room. They've done things to Mom when I'm gone, what I don't know, that have left her afraid of them, and mistreated our cat because they don't like cats! I even had one who threw a hissy fit and broke a lamp because I asked her to rub the A&D ointment into Mother's skin a little better so our hands wouldn't slide off her when we turned her. I thought I was going to have to run for my life! Can you imagine what they do when they work in a home where there is no caregiver, where they are on their own with no one monitoring them? What a frightening thought! God knows what those poor patients go through.
Those are just a few of our experiences. For years I've thought that if I could afford it, I would put hidden cameras in the house that would record what they do when I'm not here, and when I am here for that matter, because guess what? If you complain too much, or ask for another aide, you're the troublemaker. And let me tell you, these woman are experts at playing CYA, which is what they do with their agencies the minute they think they're in trouble. Don't want to lose that next patient, you know? Like I shouldn't care what they're like either as long as they're a warm body. Well, I do care. This is our home, and aides are shown every respect and consideration when they are in it, and I expect the same in return. More importantly, I expect them to do their job and take good care of Mother.
There should be stringent regulations and monitoring within the CNA field. Billions of dollars a year are spent on home health without the patient, or their families, getting the benefit of it. And it's not just with CNAs, but other home health fields as well. Being a CNA requires skills beyond washing bodies, as well as the personalities to deal with the infirm, because requiring less than that puts families and patients at risk. It's not fair. For the patients, it's downright dangerous. And if you have a really mad one who’s bigger than you, then you could be in danger, too.
Being an advocate for the regulation and improvement of the CNA field is also at the top of my Things To Do in My Next Life list. For right now, duty is calling, and loudly.
Till next time,
Sharon
P.S. I’m sure this post is riddled with mistakes, but please forgive them, and me. No promises, but I’ll try to do better.
Mother asked two things of me when she started having both mental and health problems: to be her health care advocate and to please, please not put her in a nursing home. Those were fair requests. After all, she's my mother and she's taken care of me one way or the other since the day I was born. Besides that, I love her and taking care of her is my responsibility. I also know from experience that I'll damned well do a better job of it because I love her. She, like anyone else, deserves to be well cared for through end of life. It's called respect, and being humane, and to provide any less is unconscionable. We have gone through more, survived more, and managed to overcome more than I have time to share with you right now. Keeping her here at home where she gets above-average care, love, and understanding is the most important thing in the world to her, and to me. But if I can't find a way to replace income we recently lost, which I will explain at another time, we will lose our small condo and Mother will be forced into a nursing home. She will not survive. Not more than a month. I know that. And she wants more than anything to survive. That's her right.
I've tried to find ways to work from home, which is near impossible. I'll also explain that somewhere down the road. A couple of months back, I finally made the desperate decision to try this blog to generate interest in our plight and to set up an Amazon affiliate site because any little bit will help. I knew it wouldn't be easy because I'm totally illiterate when it comes to computers, but my goodness, what was I thinking? I hate computers. Always have. And I'm not afraid or ashamed to say it. So brace yourself because I'll probably take down Amazon, Google, heck, the whole Internet, before this is over. But, boy, I've tried to conquer it all. Almost collapsed from exhaustion last week because of the work, stress, and pure anguish of trying to do everything I have to do to make it all happen, plus everything else in my life that I’m responsible for. I need help, big time. And that brings me to my rant.
Has anyone out there had to deal with nurses' aides? If so, my heart goes out to you. One of the main reasons I haven't been able to make a living sooner is because that for at least the last two years, I have not had one good, dependable, trustworthy, honest aide to take care of Mom during the day so I have time to keep clean the house (Hahahahaha!) and keep it running, take out the garbage, change the light bulbs, stop the toilet from running, do the laundry, buy the groceries, run the errands, be a vet tech (We have a big, lovable cat.), pay the bills, deal with deliveries and the nurse practitioner and the x-ray tech and the girl who comes to draw blood and Medicare and insurance companies, all the while still doing my part of Mom's daily care: manning the feeding tube, giving medications, dealing with behavior problems, lending an extra hand when the aide needs help. Oh, yeah, and making time to brush my teeth, take a bath (Hahahahaha!) and eat. There’s more, but you get the idea. Oh, one important other thing: make money. Paleeeze! Our home is a zoo and I'm the zookeeper. So having a good aide is of the utmost importance. Unfortunately, solving that problem is at the top of my list of the hardest parts of taking care of a loved one at home. Figures.
So, as fate would have it, and as of shortly before noon today, I am without an aide. I had high hopes for the one who just spent her last morning with us. Since experience has taught me what can go wrong with the aide-me relationship, I thoroughly grilled her when we talked before she came onboard. Did she have her personal life under control? Did she have a babysitter and an alternate should she need one? What were her attitudes about care giving, especially seeing to details? She gave all the right answers and I thought maybe I’d found the one. I guess I should have also asked if she kept her car in good running order and saw to it that she had a spare, and if she was the go-to person when her family or her friends were having problems, or even just wanted to chat, and did she understand that making and returning personal phone calls should be done only during lunch hour, and did she understand that when things run amuck at home, she needs to find solutions after work hours rather than calling me before my alarm goes off to say she has to stay home to take care of things, or to ask to come in long enough to fly through the morning duties with Mom (my description of it and not hers) and then leave...and make the time up later?
Another lesson learned. They all seem to think that if I'm tolerant of those things, even to the slightest degree and only because I hope it will help in getting a full day's work out of them, that it's okay to put their lives and their problems first. It's not. Without mentioning all the previous days off in the few short months she's been here, she left at noon last Monday, didn't make it in at all yesterday, and worked until 11:30 this morning, then announced she was leaving at noon and wouldn't be back until Thursday! No babysitter, which she knew last week was going to be a problem. No forewarning for me. She just won't be here! Needless to say, after a short exchange of words, I told her she didn't have to come back Thursday! Enough is enough. I genuinely liked this person and so did Mom, but I’m tired of being the one who suffers the brunt of her personal problems and often poor planning. So now the search begins, and the training when one is hired. Darn. All I do is lose more valuable time, and grow more weary.
So now, once again, I am on my own. I need groceries and will run out of Mom's Depends by tomorrow night. I'm supposed to be going in next week for a six-month follow-up ultrasound to check on the lump in the center of my right breast, but will have to cancel that. The cat needs to go to the vet for his overdue shots because without them, SPCA will not pick him up and keep him if we have to evacuate due to a hurricane threat. I am now responsible for each and every little, and big, thing that has to be done for Mom, and she is high maintenance. If you're interested and want to take a moment, I explain a little about her condition in About Mother and Me. I am totally housebound, exhausted, and have only one brain cell left. And there's absolutely no one to help. And I am mad! It should not be this difficult to do the right thing and take care of someone you love.
We live in Florida, and I don't know about your state but here aides are only required to take five days "training" (I've actually seen ads for places that offer one-day training!) and then pass a test, which I would love to be privy to, to become certified nurses' aides. They are then hired by staffing agencies, usually as independent contractors, and turned loose on unsuspecting families to do a very important job: see to the care and well-being of the sick and elderly. This last aide caused me no major concerns and I'm fortunate to be working with an agency that follows up on them every now and then, but most don't. They send them in and if you have a problems, they send another one, as long as it's a warm body doing a billable job (Mom's on a Medicaid Waiver program, which pays for the aide). Some of the aides we've had are brand new, some had years of experience, and out of all of them there have only been two who knew the meaning of aspiration and what to do should it happen. How can anyone work with the sick, and especially the elderly, and not know that? I swear they are trained at bathing and bottom washing, and no more. A lot of them do not have the ability to understand important things to do and watch for when caring for someone who's fragile and, if they do, the concern to follow through. I should never have to tell them to freshen her mouth, or offer her something to eat, or turn her and put pillows behind her back, or reassure her when she's frightened, or talk to her when she's trying to make conversation, or give her time to eat without being rushed instead of saying she's not hungry and take the food away simply because she didn't take the bite as quick as they wanted her to. Heck, she’s 90 years old!
Most of them have little or no respect for your home or what's in it. They're messy, sometimes downright unclean, and don't give second thought to cleaning up after themselves, which only creates more work for me. I trusted the last one completely in our home, but we've had many things stolen over time. They've gone through my mail and been on my computer when I was gone. They'll let slip knowledge of something that's kept in a place where they had no business looking. One even used to take naps on my bed after I caught her sleeping on the sofa a couple of times. I guess she figured she had more time to get to her feet when she heard me coming through the door if she was in the bedroom and not the living room. They've done things to Mom when I'm gone, what I don't know, that have left her afraid of them, and mistreated our cat because they don't like cats! I even had one who threw a hissy fit and broke a lamp because I asked her to rub the A&D ointment into Mother's skin a little better so our hands wouldn't slide off her when we turned her. I thought I was going to have to run for my life! Can you imagine what they do when they work in a home where there is no caregiver, where they are on their own with no one monitoring them? What a frightening thought! God knows what those poor patients go through.
Those are just a few of our experiences. For years I've thought that if I could afford it, I would put hidden cameras in the house that would record what they do when I'm not here, and when I am here for that matter, because guess what? If you complain too much, or ask for another aide, you're the troublemaker. And let me tell you, these woman are experts at playing CYA, which is what they do with their agencies the minute they think they're in trouble. Don't want to lose that next patient, you know? Like I shouldn't care what they're like either as long as they're a warm body. Well, I do care. This is our home, and aides are shown every respect and consideration when they are in it, and I expect the same in return. More importantly, I expect them to do their job and take good care of Mother.
There should be stringent regulations and monitoring within the CNA field. Billions of dollars a year are spent on home health without the patient, or their families, getting the benefit of it. And it's not just with CNAs, but other home health fields as well. Being a CNA requires skills beyond washing bodies, as well as the personalities to deal with the infirm, because requiring less than that puts families and patients at risk. It's not fair. For the patients, it's downright dangerous. And if you have a really mad one who’s bigger than you, then you could be in danger, too.
Being an advocate for the regulation and improvement of the CNA field is also at the top of my Things To Do in My Next Life list. For right now, duty is calling, and loudly.
Till next time,
Sharon
P.S. I’m sure this post is riddled with mistakes, but please forgive them, and me. No promises, but I’ll try to do better.
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Mother four years ago at age 86. She looks much the same today after surviving one life-threatening episode after another. She is amazing.