Something went terribly wrong with the still-new aide this morning and I am again on my own with Mom. I want to explain what happened so you won't all think I'm a crazed caregiver, especially those of you who don't know me personally. I wrote much of this in a Facebook note because I didn’t want those friends, many of whom I only know through Facebook, to think there was something desperately wrong with me when I told them she was gone. I hope the same for you.
I want you all to know that I go to great lengths when I screen aides, as well as helping them learn the important things they need to know in order to safely care for Mom, even though many of those things they should already know since they all have experience in caring for the elderly, even to the point of working in nursing homes as this last one did. My, is that a frightening thought. I’m sure you understand just how frightening if you read my last post titled Just Plain Scary and saw the kinds of things I had to repeatedly remind her to do, things that were nothing more than basic safety precautions.
I know everyone has a learning curve and that some people catch on quicker than others. I've trained folks since I was in my early 20s, ten years of that when I had my own business, and believe in starting with the basics so they have a good foundation and then building from there. And I do believe in "training manuals" because I always had and have to refer back to them when I'm learning. So I've prepared three things for aides to read: a little about Mom and me plus an overview of her medical history; a list of their job responsibilities; and a list of things to remember. I ask them to read it all when they come for the meet and greet and watch their facial expressions as they do. I can often learn a lot by doing just that because what they're reading goes into great detail about how difficult Mom is to care for and how particular I am with her. That's fair to them and to me. When they're done, I ask if they read anything that concerned them, or frightened them, or made them wonder who the heck I thought I was. They always answer no. They leave the copies behind and if they're hired, I give them back to them their first day. I did that with this aide. She glanced at them and put them on the arm of the sofa. That's where they were when she left that day so I put them where she sat her purse so she'd see them first thing the next morning. They disappeared after that and I never saw them again. I doubt that she did either. So now I’d like to tell you what ended it all so quickly this morning in hopes you’ll understand that her reaction to what little I said, in a good-naturedly way, was over the top and uncalled for.
It's a rule here that they don't come in and start doing for Mom until we've had a chance to talk about how she did overnight and about any percautions we should take to get her started off on the right foot. Believe me, that’s very important. Roberta rarely did that. She just dived in.
Mom and I were up until 5AM this morning dealing with what I hope was the worst of the impaction. She has a repaired rectal prolapse so you have to empty her out slow and easy so as not to undo the miracle the surgeon performed. This time has taken longer than most. We were both worn out and it stood to reason she would be grumpy, so you use your head and do what needs to be done as you can. Simple logic.
I was in the bathroom when the aide got here and when I came out, she had the wrist BP monitor on Mom's arm. She was gripping Mom's wrist with her left hand and forcing her fingers apart with her right hand because Mom was making a fist. I should have nailed her right there because she was applying way too much pressure, but I didn't. I went over, and with a smile on my face, asked why she was trying so hard to undo Mom's grip. She said she couldn't get a good BP if she didn't. Like making her mad or hurting her was going to make her let anyone get a good BP. Good thinking. I could see how tightly she was holding Mom's wrist so I said, again good naturedly so I wouldn't make her mad, that gripping her wrist tightly would also cause a bad reading. She shot me a sideways glance that could have killed and said she WASN”T gripping too hard and she WASN’T hurting her and IF SHE SAID SHE WASN’T DOING IT, SHE WASN’T DOING IT! And the tone of voice she said it in was really, really bad. I was so stunned it took my breath for a second.
Now I don't know who she thought she was talking to but no one, and I mean no one, talks to me that way in my own home, not my family nor my friends. and especially not someone who has been shown every courtesy. I told her that what little I said in a good humored way in no way merited the response she had just delivered and that I thought we definitely had a problem. Her eyes got big as saucers, she stepped back and said we didn't, then went into the bathroom, I was sure to make a call to her agency to CYA, then got toilet paper, sat down, and started tearing and folding (we keep it done in advance), never looking up once. Mom was scared because all this was going on right next to her, so I calmed her down, pulled her up, took her BP, and called the agency. And yes, she had already called them. Good, I told them, because I was sending her home. And I did. No regrets.
I'd told the agency last week that I was afraid she was in over her head and getting frustrated because every time I had to remind her of something, all of which were things that I'd repeated day after day, she got a hateful look on her face, very sullen. Because she didn't talk much, I was never sure if it was her or me so I was minding my manners so as not to upset her until I could get to know her. It's obvious now that timid, smiling demeanor she let me see in the beginning was no more than a cover for a woman with a definate attitude. I've seen it time after time and when a simple thing like what I said this morning, which was way too nice considering what she was doing, sets someone off like that, well, there's going to be worse problems as time goes on. Been there, done that. So she's outta' here.
I'm tired and frustrated. We will soon be flat broke. It will be all over and Mom will end up in a nursing home being cared for by aides like her or worse. Unfortunately, that's what nine-tenths of them are like anymore. Most of them are women who can't earn a living any other way and they're only in it for a paycheck, and that's the attitude that keeps resulting in Mom getting hurt. I've dealt with this plus more for so long now with aide after aide and that's cost me the time I needed to try to save our behinds. That's not fair. If I'm up front with them from the interview on, then they should be upfront with me. Don't take a job for only the money, especially this one. If they can't take constructive criticism, which I'm going to give time after time until I see they're doing what's necessary to keep Mother from harm, then I don't care. If they have an attitude that has probably shown itself on other jobs, I don't care. Those are their problems, not mine. They're treated well here, even coddled, in hopes of making them comfortable and getting through to them how important what they do is to both Mom and me. If they're not willing or able to give at least that, and to return the respect their given, the outcome is their problem.
The agency has been after me to split the hours here between two aides, thinking that since so many of them have a problem finding their way to work, I’d have a backup. Been there, done that, too. Two to train and I have to repeat and repeat and repeat. Two personalities to learn about and deal with. Two coming and going, which confuses and upsets Mom. Two to have to worry about not showing up. It's a nightmare. But this is what I told the agency later this morning after I’d thought it through: I’ll try two against my better judgement, but no more meet and greets. It obviously doesn't help and it's more of my time wasted. If they have someone, send them in, but one at a time. Tell them in advance that I'm fried, in a pinch for time and have none to waste. Tell them Mom's hard, I'm particular, and I'm tough. But I'm also fair, and patient if I see they're trying. Tell them that what I ask them to do and the way that I ask them to do it is the way it is. Period. Then, and just between the agency and me, they will have only three days. That's all I'll waste in sizing them up and seeing if they're sucking up every little thing I share with them that will help all of us, and then applying it. If I don't see that, they're gone. And I mean it this time. It's sad to have to reach this point and this frame of mind, isn't it? But I mean it. They’re costing us everything. So from now on, if they can't stand the heat, they can get out of the kitchen.
Till next time, whenever that will be,
Sharon
Thursday, June 17, 2010
Just Plain Scary
I think I’d better write for a bit, at least until the adrenalin high I’ve been on all day subsides some or I’ll never get to sleep. Jay Leno just came on and I’d like to relax and listen to his monologue but I wouldn’t be able to stay in the chair long enough. I’m always glad to feel a little charged but this is ridiculous!
I haven’t posted since the 11th. It is now the 16th and I can honestly say there was only one day when I could have and that was Sunday, the 13th. It was my birthday and Mom had a problem we had been working on solving since the day before, so I decided to take the day to give her the attention she needed and deserved, and to give myself the gift of not thinking, even one time, that I should be posting, or I should be loading products on the aStore pages, or I should be cleaning out the fridge, or that I should…to heck with it. I shouldn’t do one darn thing that I didn’t want to do. So there. It was wonderful, but Monday followed Sunday and my day of bliss was soon erased from my mind. Back to reality. Well, at least I had that one day.
I’m going to write a tiny bit off what’s run helter skelter through my mind today, and the only way to do that is to just write the thoughts, many of which I said out loud and some that I kept to myself, and without trying to put them into paragraph form. There’s no way I could write cohesive paragraphs without losing the mental chaos, the confusion, the humor of it all. This may be hard for you to follow, but my mind is hard to follow sometime, so here goes, starting from shortly after the aide arrived:
· She’s still sleeping soundly this morning and will be a little slow waking up.
· You’d better let her wake up on her own because if you don’t, she’ll be mad and
agitated and that will set the tone for the day. Remember?
· Her stomach looks distended so she probably has gas. What do you say you pull her
up and turn her on her side for a moment and give her a chance to pass it before you do her face and mouth care. Remember?
· It’s 9:05 and the doctor’s office is open so I’m going to call them and see why no one's come to draw Mom’s blood that was ordered last Friday.
· Quincy (the cat), crying won’t help because you already had your breakfast!
· Why is that toilet still running?
· Did you take her vitals so we know what they are before I give her the BP med?
· Wow, that’s sounds a little high. That wrist monitor gives wacky readings if you don’t hold it directly across from her heart. Remember?
· When you change her, I’d like to look at the little red place on her bottom and then we’ll decide how to treat it. Okay? Whoa! You never lay her flat before putting the feeding pump on hold and clamping the tube. She could aspirate. Remember?
· Let’s see, I’ve washed the dishes, straightened up the kitchen, ate my toast and she’s still in the middle of the pants change. Mom’s getting a little too mad.
· Let’s put a dab of zinc oxide directly on the red spot, and then spread the barrier cream on her bottom. Don’t forget to not rub it completely in so it will protect her skin better. Remember?
· It might be a good idea to put the foot of her bed down now that you’ve got her pulled up, then straighten out her clothes. She can aspirate from the stomach up as well as the throat down. Remember?
· I’ll alcohol her table so I can use it to give her the Seroquel real quick. Okay?
· Man, I’ve got to get to started putting products on the aStore pages.
· Darn, I only have about one glass of Diet Coke left. Now I’ll have to run to the store.
· There’s another important part of pulling her up in bed. Once you do, you have to adjust her hips by gently pulling the pad to the right so her spine is nice and straight and she’s not lying crooked. If you leave her like that, she’ll start aching all over and then she’ll fuss. Remember?
· You want to make sure the bed pad is nice and straight under her because if it’s in wrinkles or rolls, it can cause pressure points that can lead to bed sores. Remember?
· No, Quincy. It’s too early for lunch.
· Her lips and mouth look dry. Maybe you should freshen her mouth and put a little Vaseline on her lips, don't you think?
· Dear, I can’t afford to donate to your cause because, in all honesty, I’m broke. Could you please take me off your call list?
· Are you sure it’s time to renew the dishwasher warranty? I’ll have to call you back.
· Did you remember to turn her and put a pillow behind her back?
· Now how the heck did I add a new category page to this aStore. Short memory.
· Good God! How many products does Amazon have for me to choose from in this category?! You gotta be kidding! Three thousand what?!
· Oops. It’s time to flush the feeding tube.
· No BM today and I know there’s more. Have to work in another dose of milk of magnesia. Bless her heart.
· If I look at one more nightgown choice I’m going to scream. But I’ve got to make headway on these pages!
· This water is running too slowly down this tube. Guess I’d better do 30ccs of Coke to clear it out.
· Why does she breathe from her stomach like that? I know I read that’s really the right way to breathe but it’s still scary to watch.
· This computer chair is killing me! I’ll be crippled. Let’s see, I’ll put a pillow in the seat and one behind my back. Now what can I use for a footrest? Maybe that would help.
· What the heck time is it? I haven’t heard back from the doctor’s office and she said she’d call me back shortly. The day’s almost gone and no call.
· Damn, it’s thundering and I don’t have any Coke!
· Quincy, is it really time to eat again or do you have a tapeworm?
· Oh, my God, another new category. I’m not even gonna look at how many products there are in this one.
· Hello. This is Sharon Clayton. Did you even find out when they’re coming to draw blood? Oh, you left them a message to call you and you haven’t heard back from them. And you forgot. Well, would you call them again and get back to me? Thanks.
· Good Lord, my legs are numb from sitting in this chair. I like to shop but somehow this isn’t the same. Amazon’s too big.
· Oops, time for afternoon Seroquel.
· It can be boring when she sleeps. There are lots of magazines that I’ve saved so help yourself.
· You’re okay, Mom. I’m sitting right here watching you so don’t be afraid.
· Hello. Oh, so what other service are you going to call and how soon can they come? Heck, she’s 90 and not eating anything by mouth and I’m worried. By the way, mobile r-ray was here Saturday morning and you would have had those results on Monday. Could you find the reports and read them to me? Yes, I do have their phone number. And you’ll call me back?
· Would you really run over to the store for me? Thanks for offering and that will get you a breath of fresh air, so good thinking. Would you get me a fried chicken breast as well? Thanks. I’ll listen for Mom while you’re gone.
· Hello? The chest x-ray is fine and the stomach report says she’s a little impacted. I figured that out already and we’re working on it. Okay, so if we need another x-ray, can we wait till day after tomorrow because she’s been going a lot until today and that will give me a chance to give her a little more milk of magnesia. I hope another day will do it and then maybe they won’t have to come back again a third time. Thanks.
· Hello? No, not chicken tenders. A fried chicken breast. You want me to tell the deli guy? Okay, put him on.
· How many more darn more categories do I have to go? Ohhhhhh.
· You just have a little tummy discomfort, Mom. Let me turn you up on your side and hold you there for a minute or two. You’re okay.
· Why is the pad up behind your back instead of under you fanny?
· I’m sorry, Quincy. I can’t stop and hold you now. I have to keep working on this aStore, so please quit pawing at my leg and looking at me like that. You’re making me feel guilty.
· Oops, time to flush the feeding tube.
· Is it time for you to leave? Did you remember to empty her wastebasket today? Did you take her vitals?
· Yea!! I’m done with that category! Get up and walk away from it for a minute. Oh, Lord, I’m hobbling here. Get the Advil.
· I’m eating my darn chicken before it’s time for the next round of meds and a pants change!
· Maybe I’ve made a bad choice for this new category. There are only 175 products. They must have them hidden somewhere else. 175. That’s impossible. This is Amazon.
· You’re okay, Mom. I’m right here.
· Gee, when did I last change the air conditioner filter? And what about this category made me think of a filter? Scary. If I go look, it’ll give me a chance to stand up and walk. Ohhhhhh. It’s been that long? No wonder I’m sneezing.
· There. Pants are changed, clothes are straight, hair’s smoothed back away from her face, oxygen tube’s in place, mouth's freshened and Vaseline’s on her lips, and her sheets are nice and straight just the way she likes them.
· Not yet, Quincy, not yet. But soon. You want a treat?
· Oh, my aching body.
· One good dose of milk of mag and another flush. Sleep tight, Mom. I love you…and I’m trying.
And that’s just the tip of the iceberg. Phew.
Come on, Quincy. It’s time.
Until our next time,
Sharon
I haven’t posted since the 11th. It is now the 16th and I can honestly say there was only one day when I could have and that was Sunday, the 13th. It was my birthday and Mom had a problem we had been working on solving since the day before, so I decided to take the day to give her the attention she needed and deserved, and to give myself the gift of not thinking, even one time, that I should be posting, or I should be loading products on the aStore pages, or I should be cleaning out the fridge, or that I should…to heck with it. I shouldn’t do one darn thing that I didn’t want to do. So there. It was wonderful, but Monday followed Sunday and my day of bliss was soon erased from my mind. Back to reality. Well, at least I had that one day.
I’m going to write a tiny bit off what’s run helter skelter through my mind today, and the only way to do that is to just write the thoughts, many of which I said out loud and some that I kept to myself, and without trying to put them into paragraph form. There’s no way I could write cohesive paragraphs without losing the mental chaos, the confusion, the humor of it all. This may be hard for you to follow, but my mind is hard to follow sometime, so here goes, starting from shortly after the aide arrived:
· She’s still sleeping soundly this morning and will be a little slow waking up.
· You’d better let her wake up on her own because if you don’t, she’ll be mad and
agitated and that will set the tone for the day. Remember?
· Her stomach looks distended so she probably has gas. What do you say you pull her
up and turn her on her side for a moment and give her a chance to pass it before you do her face and mouth care. Remember?
· It’s 9:05 and the doctor’s office is open so I’m going to call them and see why no one's come to draw Mom’s blood that was ordered last Friday.
· Quincy (the cat), crying won’t help because you already had your breakfast!
· Why is that toilet still running?
· Did you take her vitals so we know what they are before I give her the BP med?
· Wow, that’s sounds a little high. That wrist monitor gives wacky readings if you don’t hold it directly across from her heart. Remember?
· When you change her, I’d like to look at the little red place on her bottom and then we’ll decide how to treat it. Okay? Whoa! You never lay her flat before putting the feeding pump on hold and clamping the tube. She could aspirate. Remember?
· Let’s see, I’ve washed the dishes, straightened up the kitchen, ate my toast and she’s still in the middle of the pants change. Mom’s getting a little too mad.
· Let’s put a dab of zinc oxide directly on the red spot, and then spread the barrier cream on her bottom. Don’t forget to not rub it completely in so it will protect her skin better. Remember?
· It might be a good idea to put the foot of her bed down now that you’ve got her pulled up, then straighten out her clothes. She can aspirate from the stomach up as well as the throat down. Remember?
· I’ll alcohol her table so I can use it to give her the Seroquel real quick. Okay?
· Man, I’ve got to get to started putting products on the aStore pages.
· Darn, I only have about one glass of Diet Coke left. Now I’ll have to run to the store.
· There’s another important part of pulling her up in bed. Once you do, you have to adjust her hips by gently pulling the pad to the right so her spine is nice and straight and she’s not lying crooked. If you leave her like that, she’ll start aching all over and then she’ll fuss. Remember?
· You want to make sure the bed pad is nice and straight under her because if it’s in wrinkles or rolls, it can cause pressure points that can lead to bed sores. Remember?
· No, Quincy. It’s too early for lunch.
· Her lips and mouth look dry. Maybe you should freshen her mouth and put a little Vaseline on her lips, don't you think?
· Dear, I can’t afford to donate to your cause because, in all honesty, I’m broke. Could you please take me off your call list?
· Are you sure it’s time to renew the dishwasher warranty? I’ll have to call you back.
· Did you remember to turn her and put a pillow behind her back?
· Now how the heck did I add a new category page to this aStore. Short memory.
· Good God! How many products does Amazon have for me to choose from in this category?! You gotta be kidding! Three thousand what?!
· Oops. It’s time to flush the feeding tube.
· No BM today and I know there’s more. Have to work in another dose of milk of magnesia. Bless her heart.
· If I look at one more nightgown choice I’m going to scream. But I’ve got to make headway on these pages!
· This water is running too slowly down this tube. Guess I’d better do 30ccs of Coke to clear it out.
· Why does she breathe from her stomach like that? I know I read that’s really the right way to breathe but it’s still scary to watch.
· This computer chair is killing me! I’ll be crippled. Let’s see, I’ll put a pillow in the seat and one behind my back. Now what can I use for a footrest? Maybe that would help.
· What the heck time is it? I haven’t heard back from the doctor’s office and she said she’d call me back shortly. The day’s almost gone and no call.
· Damn, it’s thundering and I don’t have any Coke!
· Quincy, is it really time to eat again or do you have a tapeworm?
· Oh, my God, another new category. I’m not even gonna look at how many products there are in this one.
· Hello. This is Sharon Clayton. Did you even find out when they’re coming to draw blood? Oh, you left them a message to call you and you haven’t heard back from them. And you forgot. Well, would you call them again and get back to me? Thanks.
· Good Lord, my legs are numb from sitting in this chair. I like to shop but somehow this isn’t the same. Amazon’s too big.
· Oops, time for afternoon Seroquel.
· It can be boring when she sleeps. There are lots of magazines that I’ve saved so help yourself.
· You’re okay, Mom. I’m sitting right here watching you so don’t be afraid.
· Hello. Oh, so what other service are you going to call and how soon can they come? Heck, she’s 90 and not eating anything by mouth and I’m worried. By the way, mobile r-ray was here Saturday morning and you would have had those results on Monday. Could you find the reports and read them to me? Yes, I do have their phone number. And you’ll call me back?
· Would you really run over to the store for me? Thanks for offering and that will get you a breath of fresh air, so good thinking. Would you get me a fried chicken breast as well? Thanks. I’ll listen for Mom while you’re gone.
· Hello? The chest x-ray is fine and the stomach report says she’s a little impacted. I figured that out already and we’re working on it. Okay, so if we need another x-ray, can we wait till day after tomorrow because she’s been going a lot until today and that will give me a chance to give her a little more milk of magnesia. I hope another day will do it and then maybe they won’t have to come back again a third time. Thanks.
· Hello? No, not chicken tenders. A fried chicken breast. You want me to tell the deli guy? Okay, put him on.
· How many more darn more categories do I have to go? Ohhhhhh.
· You just have a little tummy discomfort, Mom. Let me turn you up on your side and hold you there for a minute or two. You’re okay.
· Why is the pad up behind your back instead of under you fanny?
· I’m sorry, Quincy. I can’t stop and hold you now. I have to keep working on this aStore, so please quit pawing at my leg and looking at me like that. You’re making me feel guilty.
· Oops, time to flush the feeding tube.
· Is it time for you to leave? Did you remember to empty her wastebasket today? Did you take her vitals?
· Yea!! I’m done with that category! Get up and walk away from it for a minute. Oh, Lord, I’m hobbling here. Get the Advil.
· I’m eating my darn chicken before it’s time for the next round of meds and a pants change!
· Maybe I’ve made a bad choice for this new category. There are only 175 products. They must have them hidden somewhere else. 175. That’s impossible. This is Amazon.
· You’re okay, Mom. I’m right here.
· Gee, when did I last change the air conditioner filter? And what about this category made me think of a filter? Scary. If I go look, it’ll give me a chance to stand up and walk. Ohhhhhh. It’s been that long? No wonder I’m sneezing.
· There. Pants are changed, clothes are straight, hair’s smoothed back away from her face, oxygen tube’s in place, mouth's freshened and Vaseline’s on her lips, and her sheets are nice and straight just the way she likes them.
· Not yet, Quincy, not yet. But soon. You want a treat?
· Oh, my aching body.
· One good dose of milk of mag and another flush. Sleep tight, Mom. I love you…and I’m trying.
And that’s just the tip of the iceberg. Phew.
Come on, Quincy. It’s time.
Until our next time,
Sharon
Friday, June 11, 2010
I Feel Another Rant Coming On!
So just what have I been doing that’s kept me from posting for so long? Well, let’s see. I spent last Friday and Saturday taking care of Mom and interviewing nurses’ aides. Same thing Saturday. I devoted Sunday to trimming and filing fingernails and toenails, doing a facial, a head-to-toe scrub, and then changing sheets. Not for me, for Mom, and all of that on top of the routine daily care she received. Needless to say, there wasn’t a moment during those three days to write a post or work on my Web site.
Monday started off fine, then about 1PM Mom started getting agitated and within minutes was in the throws of a full-blown manic episode, something she’s been cursed with for about five years. They can last two or three hours, or around the clock. That one ended at almost 1AM Tuesday morning. The poor thing yelled at the top of her lungs, barely stopping for a breath. It’s torturous for her and for me, and I’ll write a detailed post of what she endures when she has them when I have more time. When exhaustion finally overtook her and she went to sleep, I had to monitor her vitals closely because she goes into such a deep sleep that her system slows down almost to a halt and she forgets to breathe. I stayed up with her until about 3:30AM before falling asleep sitting upright in the recliner, and then got up a few short hours later to greet the new aide. Mom “crashes” the day after an episode and sleeps soundly, so that gave me a little more time to start teaching the aide what she needs to know about taking care of Mom. There’s a lot to learn because of Mom’s health issues, physical limitations, and mental state, so I have my work cut out for me when a new aides comes in. I finally ate a bagel at 3PM that day, which was my breakfast and lunch.
Mom went into another deep sleep that night, so I stayed up monitoring her until 2AM, then passed out again. Wednesday was a repeat with the aide, who had the world thrown at her and was a little overwhelmed by it all. Thursday was another day of training, but with a wide-awake mother who was ready to rumble. By mid-afternoon, I was so tired I couldn’t think of what I was supposed to do next. Dinner of another bagel at 10:45PM and that brings me up to now: 1AM Friday morning. Oh, Lord, I am absolutely worn out. And I’m mad.
I haven’t had more than five hours sleep a night in almost two weeks. I’m out of clean clothes and house slippers and don’t know when I’ll make it to the laundry room (No, the aide cannot do my personal laundry, only Mom’s. There are restrictions as to what they can do, which is okay with me because I’d never ask anyone to do my dirty laundry.). I haven’t been out of this house for over three weeks except to dump the garbage down the shoot, which is only three condo units down from me. The house needs cleaning, the cat needs combed and his ears cleaned, I haven’t balanced my checkbook since I paid bills the first of the month (Pray for me.), I need to go downstairs to see if my car starts after not being started for almost three months (That number three just keeps popping up, doesn’t it?), and I’m desperately in need of groceries. I’d also like to find time to rest because I’m so tired I’m staggering. I think maybe I’d better stop there or I’m just gonna cry. Not really.
So there’s a little of what I’ve been doing without going into detail, and why I haven’t been writing as often as I want to, or working on my other Web site, which I desperately need to do. Our future here depends on both and I can’t for the life of me figure out how I'm going to pull it all off, so I’ll say it again: I’M MAD! I’m tired of bad luck; I’m tired of bad timing. I’m just tired! And frustrated. And aggravated. And disappointed in myself because I’m not the wonder woman I thought I was. Damn. Of all times to fail.
But I'm not asking you to feel sorry for me, because I’m doing what I want to do and that’s taking good care of my mother. And you know what else? There are millions and millions of people whose stories are much worse than mine; people who work as hard or harder than I do to take care of a loved one; people who do without more and suffer more all because they’re trying to do right by someone they love. So don’t feel sorry, just be mad right along with me because it should never, ever be this hard to do the right thing. Take it from me, it wouldn’t be if other people did their jobs, lived up to their promises and commitments, and had genuine concern for those they represent themselves as helping. And that’s a fact.
Well, it’s now 1:30AM (You're right, I am specific about time because I'm always watching the clock to see how much more time has slipped away from me.) and I need to call it a night, or a morning, or whatever, and head to the recliner, which is where I’ve slept for over a year. Another long story for another time.
Please, don’t give up on me if I don't post for a few days. It’s not for the lack of wanting to post, but for the lack of time. Hopefully when the aide is on her own I’ll have more of that.
Till next time,
Sharon
P.S.
I was too tired to publish this post when I finished it this morning so I’ll add a little more. It’s now a few minutes after ten and we’ve already had a visit from one of Mother’s nurse practitioners. I’d called them because Mom hasn’t been eating well at all (She’s on a feeding tube but still eats yogurt, pudding, applesauce, and smashed bananas.) and has been having a lot of stomach discomfort for the past few weeks. Any change in her is a concern because she can’t always tell me what’s bothering her and that’s scary. She also has a pocket of fluid under the lower lobe of her left lung for which there seems to be no explanation. They found it a few months back and even though it had decreased as of the last x-rays three months ago, it still has to be watched.
With all that I have said and will say about health practitioners, I want you to know that we have two competent, concerned, and understanding nurse practitioners now. It took a long time to find them, and a long time to build a relationship of mutual respect with one of them I must say, but we managed to do just that. They both respect the quality of care Mom receives here and do everything they can to help handle her problems at home rather than in the hospital. They know she doesn’t usually fare well there, understand my fears about hospital stays, and also respect my determination to make hospital visits few and far between. God bless them.
Frank is the one who just paid us a visit and he’s ordered a full blood workup, plus additional blood work to check for h pylori, which is a stomach virus. That means that someone will be coming to do that, as well as mobile x-ray, who will shoot film of her chest and stomach. The chaos continues. We have a mini-hospital here but it’s a way of getting the job done that hasn’t failed us yet. Good professional health care is out there and you should keep searching for it until you find it. It's what we all deserve.
P.S.S.
I got pulled away to help with Mom and it’s now after noon. That is how it goes here. But I do think I’m going to make it across the street to the grocery store and I’m excited! Pretty bad when you get excited about getting groceries, isn’t it? I'm off!
Monday started off fine, then about 1PM Mom started getting agitated and within minutes was in the throws of a full-blown manic episode, something she’s been cursed with for about five years. They can last two or three hours, or around the clock. That one ended at almost 1AM Tuesday morning. The poor thing yelled at the top of her lungs, barely stopping for a breath. It’s torturous for her and for me, and I’ll write a detailed post of what she endures when she has them when I have more time. When exhaustion finally overtook her and she went to sleep, I had to monitor her vitals closely because she goes into such a deep sleep that her system slows down almost to a halt and she forgets to breathe. I stayed up with her until about 3:30AM before falling asleep sitting upright in the recliner, and then got up a few short hours later to greet the new aide. Mom “crashes” the day after an episode and sleeps soundly, so that gave me a little more time to start teaching the aide what she needs to know about taking care of Mom. There’s a lot to learn because of Mom’s health issues, physical limitations, and mental state, so I have my work cut out for me when a new aides comes in. I finally ate a bagel at 3PM that day, which was my breakfast and lunch.
Mom went into another deep sleep that night, so I stayed up monitoring her until 2AM, then passed out again. Wednesday was a repeat with the aide, who had the world thrown at her and was a little overwhelmed by it all. Thursday was another day of training, but with a wide-awake mother who was ready to rumble. By mid-afternoon, I was so tired I couldn’t think of what I was supposed to do next. Dinner of another bagel at 10:45PM and that brings me up to now: 1AM Friday morning. Oh, Lord, I am absolutely worn out. And I’m mad.
I haven’t had more than five hours sleep a night in almost two weeks. I’m out of clean clothes and house slippers and don’t know when I’ll make it to the laundry room (No, the aide cannot do my personal laundry, only Mom’s. There are restrictions as to what they can do, which is okay with me because I’d never ask anyone to do my dirty laundry.). I haven’t been out of this house for over three weeks except to dump the garbage down the shoot, which is only three condo units down from me. The house needs cleaning, the cat needs combed and his ears cleaned, I haven’t balanced my checkbook since I paid bills the first of the month (Pray for me.), I need to go downstairs to see if my car starts after not being started for almost three months (That number three just keeps popping up, doesn’t it?), and I’m desperately in need of groceries. I’d also like to find time to rest because I’m so tired I’m staggering. I think maybe I’d better stop there or I’m just gonna cry. Not really.
So there’s a little of what I’ve been doing without going into detail, and why I haven’t been writing as often as I want to, or working on my other Web site, which I desperately need to do. Our future here depends on both and I can’t for the life of me figure out how I'm going to pull it all off, so I’ll say it again: I’M MAD! I’m tired of bad luck; I’m tired of bad timing. I’m just tired! And frustrated. And aggravated. And disappointed in myself because I’m not the wonder woman I thought I was. Damn. Of all times to fail.
But I'm not asking you to feel sorry for me, because I’m doing what I want to do and that’s taking good care of my mother. And you know what else? There are millions and millions of people whose stories are much worse than mine; people who work as hard or harder than I do to take care of a loved one; people who do without more and suffer more all because they’re trying to do right by someone they love. So don’t feel sorry, just be mad right along with me because it should never, ever be this hard to do the right thing. Take it from me, it wouldn’t be if other people did their jobs, lived up to their promises and commitments, and had genuine concern for those they represent themselves as helping. And that’s a fact.
Well, it’s now 1:30AM (You're right, I am specific about time because I'm always watching the clock to see how much more time has slipped away from me.) and I need to call it a night, or a morning, or whatever, and head to the recliner, which is where I’ve slept for over a year. Another long story for another time.
Please, don’t give up on me if I don't post for a few days. It’s not for the lack of wanting to post, but for the lack of time. Hopefully when the aide is on her own I’ll have more of that.
Till next time,
Sharon
P.S.
I was too tired to publish this post when I finished it this morning so I’ll add a little more. It’s now a few minutes after ten and we’ve already had a visit from one of Mother’s nurse practitioners. I’d called them because Mom hasn’t been eating well at all (She’s on a feeding tube but still eats yogurt, pudding, applesauce, and smashed bananas.) and has been having a lot of stomach discomfort for the past few weeks. Any change in her is a concern because she can’t always tell me what’s bothering her and that’s scary. She also has a pocket of fluid under the lower lobe of her left lung for which there seems to be no explanation. They found it a few months back and even though it had decreased as of the last x-rays three months ago, it still has to be watched.
With all that I have said and will say about health practitioners, I want you to know that we have two competent, concerned, and understanding nurse practitioners now. It took a long time to find them, and a long time to build a relationship of mutual respect with one of them I must say, but we managed to do just that. They both respect the quality of care Mom receives here and do everything they can to help handle her problems at home rather than in the hospital. They know she doesn’t usually fare well there, understand my fears about hospital stays, and also respect my determination to make hospital visits few and far between. God bless them.
Frank is the one who just paid us a visit and he’s ordered a full blood workup, plus additional blood work to check for h pylori, which is a stomach virus. That means that someone will be coming to do that, as well as mobile x-ray, who will shoot film of her chest and stomach. The chaos continues. We have a mini-hospital here but it’s a way of getting the job done that hasn’t failed us yet. Good professional health care is out there and you should keep searching for it until you find it. It's what we all deserve.
P.S.S.
I got pulled away to help with Mom and it’s now after noon. That is how it goes here. But I do think I’m going to make it across the street to the grocery store and I’m excited! Pretty bad when you get excited about getting groceries, isn’t it? I'm off!
Tuesday, June 8, 2010
I'm Sorry
I’ve tried off and on all evening to write a post but I’m afraid it’s simply beyond me. I know some of you are checking daily and I do appreciate it, but I haven’t had the time, or the brainpower, to write for the past couple of days. I will try again tomorrow if I can collect my thoughts.
Thank you for visiting and don’t give up on me. The old gray mare just ain’t what she used to be but, as Arnold says, I’ll be back.
Till then,
Sharon
Thank you for visiting and don’t give up on me. The old gray mare just ain’t what she used to be but, as Arnold says, I’ll be back.
Till then,
Sharon
Saturday, June 5, 2010
A Small Glimpse of What It's Like Being a Caregiver
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
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
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.
Subscribe to:
Posts (Atom)
Mother four years ago at age 86. She looks much the same today after surviving one life-threatening episode after another. She is amazing.