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.