Sunday, August 8, 2010

Remember Me?

Boy, I’m sure a flop at this, aren’t I? I know that fresh material should be added to blogs every day if you want to hold people’s interest and build “traffic”. I sure wish I could manage that but there seems to be a preordained schedule here that simply does not include time to blog. In fact, I’ve partially written two posts since I last published, both with different subject matters and both now old news.

A lot has happened since my last brief note when said I said Mother might be facing a trip to the hospital. She was experiencing a lot of stomach discomfort and since she has so many problems in that area, most of them related to Gerd/acid reflux, I was trying to associate all her pain with that problem, or the fact that she needs a feeding tube replacement. I asked the nurse practitioner to pay her a visit and she saw nothing that said hospital. In fact, Mom’s weight, blood work, and vitals have all improved since last November and they were excellent then. Then the evening of that very visit, Mom finally answered my prying questions when the pain hit again and it turned out to be her hips, which also causes pelvic pain when aggravated. Duh. In the course of one, or more, of the aide’s practice sessions, she’d been turned in the wrong way or pressure had been applied to her body in places it shouldn’t have. It’s always scary when it happens because I never know what or how much damage was done and only time will tell.

When it does happen, practice sessions cease and anything that involves turning her or moving her legs becomes my full responsibility, and by my choice. I learned how to do those things early on and have managed to protect her hips for three years now and since I know how to do it, I do it. That unfortunately means I never get a break from the physically demanding part of her care. She’s incontinent and is changed as many times a day as needed, and it’s draining to the person doing the job. It’s taken over a week now for the soreness to subside, which it gratefully did. I’m told the tissue around the hip area bruises, and only time and careful attention on my part helps her through it. I hate it for her but better bruised tissue than new fractures or dislocation of old ones.

At the onset of my assuming total responsibility for her, our four-day aide told me she was having long hoped for knee surgery. She had struggled with the physical stress of turning Mom from the beginning and I feared it would prove to be too much for her, so learning she was doing something to relieve her constant pain was a good thing. Mom and I both really like her. She’s very caring, has a good sense of humor, and added a bright spot to our day. She also understood us, and why it’s so important to keep Mom at home, which was more than a welcomed relief, so we will miss her. But it means we’re back to replacing aides, possibly even agencies, so I’m still in the same situation as I was when I started this blog. As I keep saying, it’s never-ending.

Mother’s difficult to care for, and in all ways. She’s strong as bull, both in body and attitude, and resists even the simplest thing that needs to be done for her if she’s of a mind to. You never know what side of her disposition or personality you’ll be dealing with each day, so you take what you get and do the best you can to deal with her. That’s confusing to most aides because her mental state dictates what you can do and when. For instance, it’s noon right now and I’m gulping down toast and writing this while waiting for her medication to calm her down so I can change her again. She demands attention from the time she opens her eyes in the morning and that continues straight through the evening, sometimes the night. The only possible break you might have is the three or four hours she naps in the afternoon…if she naps. Boy, do you pray she naps.

Her behavior, her personal care, and keeping her occupied rule the day here and is compounded by the fact that her hospital bed is in the middle of the living room so there’s no getting away from her, not for a second. We have been flooded no less than four times by our plumbing-challenged neighbor upstairs, the damage of which we’re still living with, and then once when a main building line cracked and chose our floor and our unit as the perfect location in which to do it. Mom’s bedroom and bathroom were soaked, one bedroom wall had to be cut out, pipes replaced, yada, yada, yada. She and her hospital bed were immediately pulled into the living room and there she has remained because I’ve had not the time, money, or energy to put her room back together. I managed to have it painted but that’s it. I’m one person with two hands, two feet, one bad back and one brain cell and I’m tired! She’s quite happy with the arrangement because she’s in the middle of everything and rules this small place with great satisfaction. The world is her oyster and she never lets you forget it. She’s a laughable, lovable, aggravating, maddening handful that I wouldn’t trade for anything in the world, but I do have to ask myself “Why me?”

And I’m alone in this. That’s where an even bigger “Why us?” comes to mind. My younger sister, who would give anything to be here helping with her mother, lives in Arizona and is in the sixth year of congestive heart failure. She has outlived statistics but is at a point where she can hardly do anything for herself. She and her young daughter are living on next to nothing and can’t come here because she can’t travel. We can do nothing to help each other except offer moral support. My son is in Houston and after losing his start-up business, plus most of what he owned later when Hurricane Ike hit Galveston, he started working, without experience, selling cars for a large Houston dealership. He loved the people he was working for and they liked him, and it seemed his life was on the mend. Guess what kind of new cars he was selling? Saturn. Yep, after his first four months there, GM announced they were no longer going to produce Saturn. The dealer consolidated three locations into one and Jeff has managed to survive the employee cuts, but he’s living on a small draw while the dealer negotiates with GM for a different franchise. He’s willing to do anything there so his hours are long, plus he’s trying to learn the ropes of working with an international investment firm in his off hours with the intention of saving both our behinds. In would be senseless for him to come here as our state’s unemployment rate is higher than most and he’d never find work. He’d also have no place to stay because he couldn’t hold down a job without sleep, which is a rare commodity here. There is no other family, except for Mom’s sister who hasn’t even inquired as to Mom’s health but maybe twice since last fall. But then, that’s her. So that’s it. I’m on my own and there’s nothing I can do but keep doing what I’m doing for as long as I can, which financially, is not much longer.

I’m not the only one though. There are millions of families out there who struggle just as hard or harder than I do. In fact, I’ve made two new Facebook friends, both young women who are single and taking care of their mothers, and for longer times than I have. My heart breaks for them when I read their posts because I know what a grip care giving has on their lives. Their situations are different from mine in the sense they manage to get away for a while, even to run errands or do something fun. That’s not the case here. Mom’s condition keeps me prisoner unless I have a competent, trustworthy aide, and you know that story.

They also both live in states that pay them for caring for their mothers, so they don’t seem to operate under the financial strain that I do nor live with the fear and stress of impending doom. Man, that’s tough to do. Over time I have checked with every state and Federal agency I could find and there only seems to be one option available here in Florida that I dismissed when I learned about it. I could be paid for a 40-hour week (does 24/7 care equal 40 hours? Hmmmm.), even though I’m told the pay is minimal. In return, I have to have an administrator who will be responsible for overseeing Mom’s state “budget”. That person will be responsible for placing all the services Mom has: feeding tube rental and supplies; oxygen concentrator; personal care products like pads and Depends; everything, and submitting those costs for payment each month. I cannot do those things because I would be considered an employee and that wouldn’t be kosher. Paleeze! I also would be faced with losing some of my hourly income if I had to split the time with an aide, which I would have to do. I can do everything for Mom for a while, but after a few weeks of it, I’m physically exhausted. Heck, I’m no spring chicken any more! Not only would I need a physical break, I need to be able to leave home long enough to go to the doctor or run an errand, even take a walk. What a refreshing thought! The administrator would have to hire the aide (personal hires are riskier than agency aids, God forbid) and would have to file all the necessary taxes and workman’s comp like any other employer. Isn’t that a crock? The biggest problem is the administrator has to be here and available for sit-downs with whomever. Oops! We have no one to fill the bill. See? Why us?

But I’m frustrated enough and tired enough and fed up enough and desperate enough that I’m ready to take on the Feds, or the state, or whomever because there has to be a solution for this. I even checked on state and Federal grants. Did you know that if I were involved in the study of West African elephants, I could apply for a Federal grant? Isn’t that a hoot?! Unfortunately, I’m not studying elephants; I’m just trying to take care of my mother for the time she has left. Golly, I guess that’s not as important as studying elephants, as wonderful as they are. What a screwed up world!

So tomorrow’s another day of As The World Turns…or ER…or House…or maybe Criminal Minds, even CSI. In fact, Dictionary.com’s word of the day is:

fantod \FAN-tod\, noun:
1. A state of extreme nervousness or restlessness (usually expressed in the plural.)
2. A sudden outpouring of anger, outrage, or a similar intense emotion.

I do believe that’s a sign. Stay tuned.

Till next time,
Sharon

Tuesday, July 27, 2010

Mom's Not Feeling Her Best

Mom hasn't been feeling well the last couple of days so I asked her nurse practitioner to pay a visit, which is now scheduled for tomorrow afternoon. I hope I'm wrong but I have a feeling we might be facing a trip to the hospital. If so, it's hard to say when I'll be able to post again.

I know many of you are checking in on a regular basis so I thought I'd let you know why I might be MIA. Say a prayer for us.

Till next time,
Sharon

Friday, July 23, 2010

Be Prepared To Fight!

I wish I could have written this post last night while my feelings and thoughts were fresh, but seeing Mom through a troubled evening and my own exhaustion prevented it. Tonight the intensity of the last three days has passed and I’m in that numb state you go to when stress and anger release their crushing grip. Even though I’ll struggle to find the right words while writing this, I know I want and have to give this warning to new or potential caregivers: Be prepared to fight for your loved one at each and every turn because, my dears, you are going to have to! The battle is never-ending. I’m sure this is old news to experienced caregivers but my best advice for beginners is beware! Be sure you have the courage, strength, and endurance to fight for what’s best for your loved one because, boy, are you going to be tested every step of the way. I am so tired and worn down from having to stand firm with folks in the health care field and the only thing that keeps me doing it is Mother. If I don’t, she’ll suffer even more than she has already and I can’t allow that to happen.

Let me explain what’s gone on here the past few days as an example. As I’ve written about in previous posts, we’ve had a run of bad luck with CNAs for a long time now. They’ve been sorely lacking in common sense, or have bad attitudes, or have been just plain slackers, all of which put Mom at risk. Maybe I’m wrong, but they’re paid to do a job here and since Mom receives the best of care from me, I expect at least good care from them. Ain’t been happening, and I don’t know of any place in the rulebook that says I have to accept sub-standard care from anyone who provides services for her. Even if was the rule I wouldn’t accept it! Period! That attitude has led to the agency I’m working with hearing over and over “Send me another one!” Do I feel bad about that? In a way, because I don’t like being a bother to anyone. But the flip side is if they were a little more selective about the aides they send out, who, by the way, represent their company and are their face to the patients and families they serve, I wouldn’t have to bother them. At least, that’s the way I look at it.

They have been after me from the beginning to accept two aides a week and for various reasons, all of which are to their benefit, not ours. I have stood firm on saying no because I tried it once before and it was a nightmare for both Mom and me. In Mom’s case, she grew more and more upset dealing with three different personalities (two aides and me), plus three different ways of doing things for her. As anyone who knows anything about dementia patients, and cares about dementia patients, knows, they need consistency in all things, as in the same faces, the same voices, and continuity in how things are done for them. That reduces their confusion and anxieties and adds to their sense of security. Those pluses make them less combative and more content with their surroundings. When Mother has consistency in all things, her days are easier, which is how ii should be for her, and that means mine are, too. Duh. Kinda’ helps you understand why dementia patients don’t fare well in institutional settings, doesn’t it? But since elder care is not about the patient but about billable hours, that small consideration doesn’t mean beans.

Out of frustration and just wanting someone in here to help, I gave in to two a week, knowing darn well what the future could hold. Dumb is one of my best qualities. The deal was one aide would come on Monday, the other Tuesday through Friday. In my mind, Mom would at least have the same face four days a week and I could only hope she’d tolerate it. Unfortunately for them, they were starting at a time when Mom’s worn out from all the other aides who preceded them. Her schedule has been blown to bits, her body’s tired and I’m sure aching from being practiced on, she isn’t getting good rest, and she’s darn well had it. So, she does all she knows to do to release her frustrations and anger: she yells, loudly and constantly. Believe me, it’s hard for anyone to listen to but it’s what she does. It’s what dementia has done to her and what determines how you deal with her each and every day. That’s a reality of caring for someone with dementia.

Both aides seem to be very nice women. In fact, I couldn’t help but think how enjoyable it was to have normal people in the house. Believe me, that’s saying a lot considering what we’ve had here the past months. They’re both very caring, especially the four-day aide, but Mom’s constant angry fits and loud outbursts got the best of her Tuesday, which I completely understood. Late in the day she told the agency she was afraid the stress was too much for her and then the nightmare began. I got a call from the agency that evening telling me what they were going to do and it went like this: one aide Monday, the second Tuesday, the Monday aide back on Wednesday, then the second one back Thursday and Friday. I listened politely because I felt I should and when they’d finished laying out that dandy schedule, I firmly said no. Their theory was that Mom now knew both aides so what did it matter? Well, hello, different people every day is a long way from being consistent. Poor Mom would never know whom she was waking up to and there goes that confusion thing again. The aide’s personalities are completely different and knowing Mom like I do, it would only add to her frustration, confusion, irritability, and bad behavior. She doesn’t need that and neither do I. I stuck to my no and kept being told it would work and Mother would handle it, like they new her better than I do. They don’t know her from Adam, never laid eyes on her in fact. Now I will say I have described her personality, how upset she is by change, and her manic episodes over and over during the past months hoping they’d understand her needs, so to have those needs ignored just to fit their scheduling didn’t set well with me. Aren’t we all supposed to be doing what’s best for Mom? Gee, I wonder where I ever got that idea?

I called their office the next afternoon to see where things stood and talked to the young woman I usually work with there. She must have left her pleasant tone of voice at home that day because she was now speaking to me in an authoritative manner and attempting to give me the your-mother-will-tolerate-it theory, then added that the office manager and our “case manager were handling it”. Excuse me? At that point I reminded her that no one would make the decision about the schedule, or any other service here for that matter, except me, and I’d told them the schedule I’d except so there was really nothing to “handle”. I also reminded her that I am my mother’s registered health care surrogate and power of attorney and that any and all decisions concerning her stop right here. Period.

Now let’s talk about this “case manager” thing. I keep putting the term in quotes because being referred to as a “case” aggravates me to death, and I know many others in our situation who feel the same way. We are not a “case”. We are a family who is going through the most difficult time of our lives and I find that term insensitive and totally lacking in respect. A few years back we were fortunate to start working with a local community organization who helps families secure services they need during times like ours and that’s when we became a “case”. Up until a little over a year ago, they were the one shining star we worked with in any way since Mom’s health failed. They were nice people who were good at their jobs and concerned for those they committed to helping. I’m sure they oversee every aspect of home care for many of their clients who have no one to do it for them, but in Mom’s “case” their only responsibility is to make me aware of services that are available and sign Mom up for what is needed. Since Mom’s medical care and supportive equipment was in place before they came on the scene, and is paid for by Medicare and her supplemental insurance, their only responsibility is placing Mom with agencies who send in CNAs, for which they are paid. I’m not sure what’s happened within their organization that has resulted in such an attitude change, but a little over a year ago we inherited a new “case manager” who was, without doubt, one of the most difficult people I’ve ever come into contact with, and I’ve dealt with some doozies in my life. A few months ago I asked for a new one and I’m sorry to say she seems to be cut from the same cloth. There goes my shining star. I’m certain the staffing agency manager contacted her to see what could be done to make me fall in line with their schedule (Gotta keep those billable hours, you know.) and I can only imagine how that conversation went! Little ole’ troublemaker me probably got talked about badly because I’m one who won’t accept any ole’ thing when it comes to Mom. Well, too bad! And would someone please explain to me who in the heck these two women think they are that they have the right to “handle” the decisions here? I think that calls for another “Excuse me?”! And even though the stressed aide came back the next day and said she’d like to try it again, for which I was very grateful, this saga may not be over because she still may not be able to handle it should Mom have another bad day, bless her heart. That means I could be standing my ground again. Darn!

Fighting for what’s best for Mom with doctors, nurses, agencies, aides, everyone, is what I’ve had to do for eight long years. Why? Why should I have to fight for good health care and decent services for her? Isn’t it everyone’s right to expect to be treated well regardless of age? That’s the problem, you know. The state of elder care is a disgrace to both our culture and our country. Their health issues and needs are callously and blatantly overlooked, even to the smallest comforts, and they are mistreated and taken advantage of every second of every day. They are as vulnerable as any child and there’s not one of us who should not be outraged by the sub-standard treatment delivered by so very many in the health care field, as well as their attitudes about patients and their families. We’ve lived it, I’ve witnessed it with Mom’s elderly hospital roommates, and I’ve heard stories from other people whose family members have experienced poor care that would make your blood run cold. There is no concern for old folks. What concern there seems to be is for those billable hours and services. Don’t bother ‘em, just let ‘em bill. That’s not good enough, not for my mother or anyone else!

Even though I’m tired of standing my ground with people, I swear that if I have one ounce of strength or one iota of sanity left when Mom is gone, I will be on my way to Tallahassee and then on to Washington. Somebody in government is going to listen while I speak my piece. I’m sure I’ll gain nothing but the satisfaction of saying what I need to say to anyone who will listen, but at least I will have said what I want and need to say. There needs to be reform and strict oversight of any person and business that makes money by caring for the elderly and I can’t understand for the life of me why no one brings attention to it. Maybe not caring about the elderly is our society’s prevalent attitude. How very sad.

Till next time,
Sharon

Saturday, July 17, 2010

What A Life!

Last week the aide said she was mentally tired when she left each day from listening to Mom’s never-ending tirades and that she didn’t know how I stood it 24/7 for as many years as I had. My response was the same as I give to everyone who says that: I’m sure I lost my mind waaaay back there and just haven’t slowed down long enough to know it because I’m certain no sane person could deal with it all. Then we both laughed.

But it’s no joke. There are days I feel like I should pinch myself to see if I’d react normally because nothing about normalcy seems to relate to our situation. Since nothing is a given here, especially with Mom’s behavior, you just have to take what you get each day, be flexible enough to adjust what and how much you can do with her, and be willing to do it on her schedule, not yours. She rules the day. You have to accept that. It’s the only way to survive.

Let’s face it: Mom’s hard to take care of and in every way. She considers it her job to make your job as difficult as she can. Most days she resists every darn thing you try to do for her, no matter how simple a thing it is. And she enjoys it! She’s strong and feisty and cantankerous, and you can see the gleam in her eye when she knows she’s making you struggle. Everything is a wrestling match: the bath, the clothes and pants changes, even adjusting her pillow, and I swear she’s intent on making every muscle and joint in your body ache each and every day. If you live through doing all that for her, your only thought is to sit down and try to regain the strength, and courage, for the next round. She’s exhausting.

The physical strain she causes you is enough to wear down even a young person, but the mental strain she’s capable of delivering is even worse. The lesser of that torture is that she loves to be ornery, and I swear it’s a big part of what keeps her going. She’ll fuss and argue about anything and wouldn’t give you a kind word if you begged for it. The mean looks that come across her face and the way she cocks her head to look at you when she delivers her stingers are nothing less than a hoot, and I sometimes have to turn my head so she won’t see me laugh. Believe me, the last thing you want to do is encourage her. But it’s the only way she has to assert herself, to still maintain even a little control over her life. She probably figures she’s 90 years old and with all the torment and harm she’s endured the last few years, she’ll earned the right to behave any way she wants to. I know I’d feel the same.

Then there’s the yelling. She yells if she wants attention, or if she’s hungry, or if she’s uncomfortable, or is she’s mad, or if she’s scared. Pretty much all the time, if you want the truth. Usually it’s just bad behavior for which I do correct her. Other times, it’s her demons and you do whatever you can to try to calm her. But every day this week she’s exhibited something new. She gets angry so fast it’s scary, and with a ferocity I’ve not seen before. I often call her my little Tasmanian Devil (Have you ever seen them in a snarling fit of anger?) but this is beyond that. I’ve had to increase her sedative to give her even a little relief and sometimes that doesn’t even help. She shows no obvious signs of discomfort, in fact she will tell you no if you ask if she’s hurting, and it’s not mania. It’s anger. I’m stumped.

I can’t help but think it has something to do with the constant turnover of aides and the fact that the house isn’t as quiet as it is when it’s just the two of us. I say that because it’s Saturday and even though she’s fussed today, it’s been no more than her normal behavior. Because I know what, how and when to do things for her, her schedule has stayed on track. She’s rested well and eaten well, which hasn’t been the case when an aide is here. I hope tomorrow will be better for her as well. Lord knows she deserves it.

Here goes that thought again: I wish I could clone myself.

Till next time,
Sharon

Saturday, July 10, 2010

Just Call Me Determined Daughter!

Boy, what a week. We now have two new aides, one who will be here four times a week, one who comes only once. Their agency wants me to try that schedule, the reasons for which are many. I’m trying to be optimistic about it benefiting both Mother and me, but it remains to be seen.

In the meantime, I still haven’t had time to work on this blog, or to work on my Web site, or to spread the word about our plight on FaceBook, or finish setting up my YouTube channel. You think maybe I have too many things going at one time? I sure do and considering that I’m dumb as a rock when it comes to computers, I also think I’ve bitten off more than I can chew. Since what I seem to say the most is “I HATE COMPUTERS!”, I’ve already instructed friends and family to put it on my headstone. Even though I couldn’t live without Google’s search engine, I have to say that all other Google things have become the bane of my life. I’m sure they feel that way about me by now, too. Their hearts probably sink every time they see another post from me in the Help forum. But I am determined, so much so that I chose DeterminedDaughter as my YouTube username. Of course, I have to get my account to register before I can use it but that's another story. What a hoot.

I was thinking about what my determination to care for and protect Mom has made possible for me to cope with over the years and decided that’s what I would share with you tonight. Now understand, I am not complaining nor saying “Oh, poor me.” As I’ve said before, what I’ve done and do is of my own choosing, not only when it comes to taking care of Mom but also in what I’ve been willing to deprive myself of.

Let’s see. I haven’t been out in the evening for a little over five years, unless you want to count walking the garbage to the end of our walkway and dropping it in down the shoot. I’ve gone out to dinner four times in eight years, the last time being five years ago. I’ve gone out for lunch five times, the last being four years ago, and then only across the street to the Irish pub. I haven’t been to the mall in five years, and have limited my shopping since then to Walmart, where I buy a lot of Mom’s supplies. Haven’t even done that in six months. I’ve visited my friend Bill for a haircut at his salon three times in eight years. No, my hair isn’t dragging the floor because he normally comes here and cuts Mom’s hair and mine. The salon visits were just rare treats. I love music but never get to listen to it because it agitates Mom and we don't want to go there! I rarely get to watch TV until Jay Leno comes on, sometimes not even then because the nights are busy with Mom things.

I haven’t had a steak, which you’d never believe how much I love, for five years because I won’t pay the price at the grocery store. I order pizza maybe twice a year when I can’t go without it any longer, and pick up a McDonald’s cheeseburger and small fries to eat on my way home from Walmart when I can’t do without a cheeseburger any longer either. What did I say about six months? I should add that I only do that on Thursdays because that’s 39-cent cheeseburger day. God bless McDonald’s!

I always loved clothes and shoes and handbags and jewelry, you know, all the girly stuff. Those delights ended, too, and I’ve been perfectly satisfied with a couple pairs of new jeans, a few T-shirts, and even fewer nightclothes and slippers in the past eight years. I can’t believe I’m telling you this, but it’s the way it is and people rarely see me out, so what the heck. I always had to have the latest colors in nail polish but never use it because I can’t keep in on because my hands are always in water. I wouldn’t go out of the house without makeup but now throw on a little lipstick and hide the rest behind sunglasses. That’s another one of those what-the-heck things because I don’t have time to worry with it or about it. I’ve adopted the attitude that if you don’t like what you see, look the other way because this is a good as it’s gonna get!

Does all this bother me? Sometimes, especially the steak, but only for a minute. I know it’s what I had and have to do to make our money stretch farther. Mom’s supplies are costly, and keeping a roof over our head has always been paramount, so giving up things I really don’t need comes easily. We’re all willing to sacrifice for the people we love and if we aren’t, well, then I’d say we loved ourselves more than we did them. I’ve been told that giving up so much is unhealthy, but I don’t feel any the less healthy. In fact, I feel good knowing that I do what I should be doing. It’s that simple.

It isn’t about me anymore. My priorities have changed and I’ll have time for me again when Mom and I have reached the end of our journey. For now it’s about her, and if it takes all my time and energy to take care of her, so be it. It has to be done. And if I have to do without things, so be it. She’s more important than any selfish want or need. For me, that truth will not change, and I’m glad. How I’m going to find a solution to our financial problem, I don’t know. But I know I’m not going to give up trying. I’m determined to keep at it until they drag us both kicking and screaming out the door. The stakes are too high. Mom’s continued good health for her age, her mental health and well being, her safety, her sense of security, her happiness – those are the stakes, and none could be higher.

Till next time,
Sharon

Tuesday, July 6, 2010

Poor Mother Has Had It!

We’ve had quite a time here the last few days. There has been a constant turnover of nurse's aides for weeks now ever since I made the decision not to waste any more time on someone I felt could not or would not do a good job. I knew it would be hard on both Mother and me, but I have to admit that I wore out from the stress of it before she did.

Strangers always upset her. They frighten her, and their presence often makes her think something is wrong with her or even that she’s dying. She becomes angry, anxious, agitated, and then manic. But she coped well this time until last Thursday when she finally decided she’d had enough.

There was another new face here that morning, another strange voice, and she finally reached her limit. Even through the aide and I weren’t talking loudly, we were still talking, and her normal routine was interrupted once again. She’d listened to me repeat every little detail about her far too many times, and felt unfamiliar hands gripping her and putting pressure on places where pressure needed to be avoided because of her broken hips. She’d been awkwardly turned, put in uncomfortable positions, and everything pertaining to her care had taken three times longer than it should because someone was trying to learn. She’d been bothered when she needed to be left alone and left alone when she needed attention, all in the name of practice. She was exhausted, and I know every bone in her body must have ached from excessive handling, and all I could do was keep saying I was sorry. Her only defense was to do the one thing she knows to do and that was to erupt in anger and frustration, and to such a degree that she lost what little self-control she possessed. She yelled and fussed in varying degrees until 1:30am Friday morning before complete exhaustion and fretful sleep finally overtook her.

She slept all day Friday, which is normal after exerting so much energy to agitation. She woke in a fog on Saturday so I decided to take advantage of her lethargic state. I cut and filed her fingernails, gave her a mini facial, scrubbed her from head to toe, then massaged lotion into her damp skin. She came out of her fog during all that and grew more and more relaxed as I worked my way through her care, which was what I hoped for. It worked. She was happy, content, and loving the remainder of the weekend. I kept the house quiet, even turned down a visit from a good friend. That worked, too. She rested well, ate well, and made good conversation. She was Mother, and her days were good ones like I always hope they will be.

But Monday came all too soon and even though the aide and I did everything right, her agitation returned intermittently throughout the day and evening. In fact, she was still saying “Oh, God!” and “Gosh darn it!” with great gusto at 1am this morning, which I knew was not a good sign. Sure enough, she’s hollered her way through most of this day and is well on her way to a full blown manic attack as of this minute. I’ve just given her extra medication, which is all she can have for the remainder of the night. Now all I can do is leave her alone and hope the medication will help. If not, we’re in for a long night.

Bless her heart. The way she suffers with the ravages of dementia is far worse than the physical pain she’d endured. And they have never found a medication that helps her. Of course, no one has ever gone beyond the five or six meds normally used for dementia patients and why I do not know. I’ve had to learn to accept that things as they are and to deal with them the best way I can. So we’ll make it through this night like we’ve made it through so many others, and always with the hope that she’ll come out on the other side.

Till next time,
Sharon

Tuesday, June 29, 2010

I'm Almost At My Wit's End

I never imagined any situation or circumstance that would bring me to say the title of this post. I learned to stand up for myself, to be independent, self-reliant and self-sufficient when, in my mid-thirties, I found the strength and courage to get out of an abusive second marriage. After eight terrifying years, and after allowing my confidence and self-image to be reduced to their lowest levels, I realized that in order to survive, I had to face my greatest fear: my husband, who was no more than the bully I shared my home with. Friends, neighbors, and co-workers saw him as a loving husband who worked hard to give me everything I wanted. We seemed like the typical family who had a nice, new home complete with the station wagon (yes, it was that long ago) and a Volkswagen sitting in the garage, and the 36 ft. camper and a boat parked in the driveway. In public his sense of humor made people laugh; in private his violent nature made me cry. Out of fear and shame, I hid our private life from everyone, even my family, and somehow managed to hold down a full-time job at the town bank.  

I was worn down to skin and bones but an intense will to survive enabled me to draw up every little once of strength and courage that I had left. When the moment came, I stood up straight as an arrow in front of him, looked into his cold, chillingly empty eyes, and told him I wanted a divorce. Then came his about-to-blow signals that had always terrified me most: tightly clinched jaws, twitching facial muscles, arms poised rigidly at his side with clenched fists. And then, through gritted teeth, came the words that always made me back down: “If you leave me, I’ll kill you.”

That time I didn’t back down. I moved in even closer to his face and told him to go ahead and do it if that’s what he wanted to do because I would rather be dead than live another day with him. Then I turned and walked away with the sound of my frightened heartbeat drowning out every other sound around me, expecting him at any moment to attack me from behind. Fortunately, he didn’t, and I know it was because, for the very first time, he saw no fear in my eyes, only contempt and determination, and a glaring stare back that said I was as determined to go as he was to make me stay. He’d lost, and he knew it. He started crying, and I'll bet he is probably out there somewhere crying to this day. That blubbering bully had held me captive in a miserable relationship for eight years, all because I was afraid and allowed him to do it.

Talk about a life lesson, and also my first real lesson of what a slow, and late, learner I was. I vowed then to never be afraid to meet my fears head on and to always stand up for myself, and others, when I knew it was right. I went on with my life and have never failed to live up to the promise I made myself that day. And I have never regretted it, not for one moment. I’ve tackled every challenge that’s come my way, some of which I probably shouldn’t have, like publishing a community magazine when I didn’t have the first clue about what I was doing. Fortunately, that worked also, but I paid the personal price for that decision in many ways. With that, as with all challenges, I held to the thought that I’d at least try and if I didn’t succeed, well, I’d just always wish I had. I’d do my best and that’s all asked of myself. I usually succeeded, and if I didn’t, I came close and I was happy.

But I can’t have that devil-may-care attitude about the challenge I’m facing now. And I won’t be happy if I only come close to succeeding because not succeeding means failure, failure at the most critical challenge, and important responsibility, of my life. Mother placed her life in my hands almost nine years ago when she asked me to make her medical decisions when she no longer could, and to please take care of her and not let her end up in a nursing home. That’s one heck of a serious responsibility, and one that I took, and take, to heart. Living every day she possibly can is obviously important to her or she wouldn’t fight so hard to hang on. That makes it doubly important to me because I promised to help her as long as she wanted to go on. As a result, I’ve fought hospitals, doctors, nurses, nurses aides, x-ray technicians, phlebotomists, any body and every body who didn’t think her life or her care were important enough to take decent care of. To do less is unconscionable. Boy, I use that word a lot lately.

She deserves that, and like I keep saying, so does every one else. She may be old and her mind may not be what it used to be, but she’s a human being whose life and care is just as important to her and those who love her as the middle-aged or young person’s down the street. You don’t just push old folks to the back of the bus because they’re old. You take care of them, comfort them, show them compassion and respect like you would anyone who is not well. Get rid of the damned attitude of just “keeping them comfortable”, at least until they’re at the end of life and there’s nothing else you can do for them. Mom’s not there yet, so I fight for her life every day, and for her right to live it until she and God decides it’s time for her to go.

But I’m losing the fight. I’ve tried every way I know how to find a way to earn a little living so I can supplement the loss of income from a loan, secured by our condo, that was promised by a family member, and promised to continue until Mom died or the condo sold. They changed their mind, so as a last resort, I came up with the brilliant idea of starting a blog, hopefully building a readership, then directing them to my new Web site that would contain an Amazon aStore. I spent untold hours, and into the wee hours of the mornings, getting this blog set up, which I now have a hard time posting to. The Web site and aStore are in the early stages of completion and I haven’t had time to work on them for over two weeks. In the meantime, aides, which were my only chance of ever having time, keep coming and going; the dust is so thick I could write my name on the tabletops; laundry is piled up; the cupboard is bare because I can't get to the grocery store; things are just totally out of control. And I’m tired, beaten down, and almost void of hope when it comes to pulling us out of this downward spiral that will end with Mom in a nursing home and me destitute. Such a deal. I can’t stop asking God why everything I need and have tired to do to save us remains so far out of reach, and why now at such at important juncture of Mom’s life, and of mine. I’m mad, and frustrated, and broken hearted. I go to Mom’s bed and look down into her sweet face and those trusting eyes and I can hardly bare it. She depends on me. We’ve grown old together, and the difficult times we’ve shared have only brought us closer. And I’m failing her. It’s killing me.

She’s been calling me for the past few minutes and I keep asking her to give me just one more minute so I can finish writing my thoughts. She has, and for only one little minute, and then she fusses again. A moment ago after a short silence I heard, “Honey”. Yes, Mom. “I love you.” If she could have added, “Do you love me enough to come here now?”, she would have. Ouch. She hooked me on that one. So I’m going to her now and I’ll talk to her and hug and kiss her, or reposition her, or feed her pudding, whatever I have to do to pacify her. And throughout it all, I will be looking at that sweet face and into those trusting eyes, and my heart will break. There will surely be nothing left of it before this is over, not one little piece.

Till next time,

Saturday, June 26, 2010

Please Don't Hurt Those Broken Hips!

Thank goodness it’s Saturday. I know I probably went to sleep last night with a smile on my face knowing that when I woke up, there would be no one here but Mother, the cat, and me. Mom’s peacefully dozing, the cat's curled up at the window, the house is calm and blissfully quiet, and I can move quickly from one job to another without being interrupted to the point that I never accomplish one thing. There’s a lot that has to be done here in a day just to keep up with Mom’s care, and all the other things I’m responsible for have to be sandwiched in between, or after, she’s seen to. Add a new aide to the mix, and as quickly as their coming and going here, and believe me, things are quickly out of control. People keep asking how in the world I handle it all and my response is that I’m sure I went crazy a long, long time ago and just haven’t slowed down long enough to know it because I know no sane person could deal with it. If that is the case, it’s was a blessing, but I prefer to think it’s by no more than shear determination, and thinking about what the alternative would bring to Mom if I didn’t.

So that you don’t think I make mountain out of molehills when it comes to Mom’s care, I’m going to try to explain why most of what is done for her has to be done in specific ways. She’s not the kind of patient that someone can walk in the door and start caring for. To begin with, I’ve been told her condition is more advanced than that of someone who is cared for at home because most caregivers, especially someone who has to do it alone, have usually cried uncle by now and found a nursing home. Don’t get the wrong idea. She definitely is not at death’s door. I always say that with hesitation because something could crop up today that changes that and I know it. She has a problem now with her stomach that concerns me and that I’m hoping yesterday’s blood work will lend a clue to, but her vitals are good, her weight is good, her skin is in better condition than mine, and she’s so full of pee and vinegar that she doesn’t know what to do with herself. But her broken, but mended hips, and the contracted legs that are attached to those hips mean that you have to respect her limitations and then move and position her in specific ways.

I have read, and been told, that the average life span of someone Mom’s age with just one broken hip is one year, if they don’t die within hours, days or weeks after it happens. Both of her hips were broken three years ago and miraculously she is still here. She received no emergency treatment that I can determine when it happened in the hospital, and I brought her home without knowing what was wrong. It was seven weeks later that I learned of the fractures, even though I’d begged hospice all that time to have x-rays taken so I’d know why she was in so much pain and so I’d have direction as to how to turn her, even touch her, without hurting her more. Throughout those seven weeks, she was handled by numerous hospice nurses and me, and even made to lay propped on her side when she had wound care for the growing bed sore, or even when changing her pants, all the while with two broken hips. That was inhumane and I will never forget it. But that’s another story for later.

Not one doctor or nurse, no one, ever explained how to handle her once the truth was known. In fact, I learned about the fractures during a hospital stay for an unrelated problem when a rude, arrogant, and obviously burned out orthopedic surgeon came to see her to determine if she was a good candidate for double hip surgery. When I asked why in the world for, he said because she had two broken hips. It knocked the wind out of me and painful images of her propped on her side all those weeks flooded my mind. I was in total disbelief, angry, hurt and ashamed to think of what she’d gone through because of my ignorance and hospice’s avoidance. After the surgeon saying she obviously wasn’t a candidate because of her deteriorated condition and asking in an accusing tone of voice how it had happened, I gathered myself together and said that before I told him something he probably wouldn’t want to know, I would like to know first just who in the hell he was because he’d never introduced himself. Turned out he was a senior orthopedic hospital doctor and after hearing that it happened in ICU right there in that hospital, he said it didn’t, that they were old injuries, which implied it had happened at home and, boy, did I tell him differently. He started to leave and I said the least he could do was tell me where to place my hands and how to turn her. His response as he brushed me away with his hand? “Just do what you have to do and let her lay.” With that, he turned and walked out and it took all I had to keep from chasing him down and cold-cocking him, even if he was bigger than me! He’s on my people-to-pay-a-visit-to after our journey here ends.

I brought Mom home determined to put together the story of what had happened to her in ICU and even more determined to learn how to safely handle her, and to protect her. I brought her x-rays and radiology reports home even before she was released so I could see where the fractures were. I only managed to get them that quickly by saying I needed them for a second opinion. I just didn’t tell them it was mine. If I hadn’t fibbed a little, I would have waited weeks for them to be released.

I once managed a radiology practice so x-rays and reports were nothing new to me. I didn’t know much, but at least they weren’t new to me. I saw for myself the femoral neck fractures on both the right and left just inside the hip bone, and learned for the first time of the identified object in her pelvic area, which was noted in the radiologists report. I have a theory about how it got there, which I’ll explain in another post. Luckily the fractures were clean, not splintered or ajar, which I’m sure has a lot to do with why she’s still here.

I spent hours visiting every reputable orthopedic site on the Internet and reading about hip fractures and contracted legs. What I learned concerning life expectancy and resulting life-threatening health issues was terrifying, but I knew that being well informed was my only chance of not adding to her misery. I learned about keeping her flat as much as possible, about lifting both legs as a unit and never forcing them apart, about not rotating her hips and torso or make any movement that might cause grinding of the joints, which could cause a bone splinter that could puncture or sever a blood vessel, just the basics that I could read and understand. Those things combined with common sense, like not gripping her hip and applying pressure to it when I turn her up, or supporting the small of her back once she’s turned, just plain common sense, plus Mom’s help in letting me know what hurt and what didn’t has played a large part in us making it as far as we have. Her hips are healed now, although improperly and forever weakened, and she has relative comfort as long as you take a few simple precautions when you handle her, especially when turning her. It hurts her when you don’t and you are risking breaking those hips again, or something else, if you don’t understand the reason for and necessity of memorizing those few simple steps. That’s why I stay around the clock with her when she’s in the hospital because I have yet to meet a nurse, or their aides, or, believe it or not, a doctor who seems to know them, or if they do, follows them. And that’s in a darn hospital!

That’s also why I hold my breath each and every time a new aide walks through our door because if they don’t listen, don’t have the reasoning skills to understand the logic of what I’m explaining and demonstrating, and the ability, sometimes even the concern, to do what I so carefully show them to do, Mom will be at risk any time they work with her. Add that to also having to teach them how straight to set her up before putting anything in her mouth that will result in swallowing, what aspiration is and what to do should she gag or choke (Please!), how to REALLY wash a bottom, how to straighten her body out when they pull her up so she’s not left to ache in an uncomfortable position, just the simplest things, and you can understand why I love weekends. And why I don’t want her in a nursing home where I can’t be there to watch over all those things. I don’t want her to relive the pain of broken hips, or die from it.

Poor thing. Do you know what I think of when I look at what she goes through every time someone is trying to learn to change her pants? Have you ever taken a CPR course? If you have, you’ll know what I’m talking about. If not, I’ll explain. People practice on a life-sized, soft rubber dummy. It has a mouth that’s open, a tongue, and nostrils, and when you hold its nose and breathe into its mouth, its chest rises and falls, just like a real person. That’s poor Mother, rolled around like a sack of potatoes, gripped awkwardly in all the wrong places, ending up in positions she shouldn’t. I feel like she should be stamped all over with For Demonstration Purposes Only. I just wish I was Wonder Woman again and could take care of her by myself like I did for the first four years she was sick. But I can’t. ICU saw to that. I’m older now and she’s physically harder to care for, and I just can’t. But, oh, how I wish I could, for both our sakes.

Till next time,
Sharon

Tuesday, June 22, 2010

How Can It Come To This?

I’ve got to write these thoughts down as they’re so quickly coming to mind, put them on paper before they’re lost as the next flood of thoughts fill my head, feed my emotions.

Mom has been angel since last Thursday. We were by ourselves three out of the last six days and things are always so much better when it’s just the two of us, unless she’s in an agitated state and can’t help herself. But when she’s calm and we can talk without anyone else being privy to our conversations, well, it’s the way it should be. It makes all the difference in her attitude and behavior. I can reason with her and we make it easily through all the daily care that normally upsets her. We talk about the cat, about the weather, about my sister, just normal conversation about anything that comes to mind. During these times, she answers my questions, tells me she loves me, calls me Honey, and all just as normal as can be. Then she babbles and I usually don’t have a clue what’s she’s saying, even though I’m sure she does, and I go right along with her like I understand every word. I sing to her to help get her through the things that I know make her mad, joke with her, fuss with her. I interact with her in the same way I have all my life. She appreciates being treated normally, and she responds. It gives her comfort, brings her peace, and lets her know that I don’t see her any differently than I ever have. We enjoy the days, and our time alone together. And those times usually result in another sweet memory for me. I kissed her the other night and told her I loved her. “You’re lying.”, she said. “No, I’m not. I love you with all my heart, and you know it.”, I answered. “Yeah.”, she responded after a long silence. “And I love you, too”. Those special moments, the ones where she responds in a totally coherent and tender way, are the moments I’ll always remember, the moments that will always stay in my heart. They are each and every one a treasure.

We had a rough day today. Training aides is oh, so hard on her. Everything takes longer, the hows and whys are gone over and over again. Explaining things about her hurts her, makes her angry, wears her out. But she tolerates it, sometimes well, sometimes not. Today, again, she was angel, and I know she was exhausted by the time we finished with all her personal care and finally left her alone to rest.

I’m exhausted, too. I didn’t hear the alarm this morning, the cat fell down on his job and didn’t back the alarm up with a gentle nudge and a soft paw touching my cheek, and Mom slept through it as well. I woke up ten minutes before the aide got here and I hit the floor running. It was nonstop from that point on. I ate five or six bites of macaroni salad and a handful of chips at 2:30 this afternoon, and called it breakfast and lunch. I put on the first pot of coffee about 5:30 and fell into the recliner with the heavenly first cup. Mom dozed a while, then woke up and called out the way she always does. I reassured her that I was sitting right by her and watching her closely so she could rest without worry. She gave her usual “All right.” in the sweetest voice you can imagine and then dozed off again.

I finally found the energy to open a can of soup, and ate it because I knew I should, not because I wanted to, all the while with one question running through my mind: “What am I going to do? What am I going to do?” Another day lost without working on the Web site and tomorrow it will start all over again. Every minute of my time will be filled with a new, confused, unsure aide. Mobile x-ray is supposed to be here, as well as someone to draw blood. It will be a day filled with what’s most important: Mother. But another day lost at trying to slow down that freight train that’s barreling towards me while I'm frozen to the tracks, feeling like a deer caught in headlights. The soup slowly disappeared, but the question lingered.

She was sleeping soundly and there was a TV show coming on at nine that I really hoped to see, so I took her vitals, checked her oxygen level, carefully straightened her in bed and fixed her pillow. I had it in my mind that I could actually relax with another good cup of coffee and watch that show in peace. It came on at nine. She woke and started throwing one of her little mad fits at exactly 9:04. I know. I looked straight at the clock, thinking that I didn't believe it. I went to her bed, tried to calm her, begged her to please, please let me have a minute to watch a show that I really wanted to see. No way. She was going to yell. She understood what I was saying and I knew she could have stop if she tried. But she didn’t want to and there was no convincing her otherwise. So I shamed her, told her I’d given her every minute of my day and that she was being unfair, and that I was going to kitchen to watch the little TV and she could just yell if she wanted to. And I did. And she did.

She grew quiet just as the first commercial break started so I went back to her bed to be sure she was okay. She looked at me so pitifully and told me she was sorry and that she loved me. I told her I was sorry, too, and that I loved her, and that we were both just tired. Then I stroked her brow, kissed her and told her everything was fine. She looked so sad, so tired, so sorry. It broke my heart. I went back into the kitchen where she couldn’t see me, and I cried. Then all the thoughts and all the memories started flooding my mind.

Mom and I have gone through more through these last eight years than anyone could ever know. I’ve held her head when she was sick and then cleaned up the vomit. I’ve stood beside her bed with her turned up on her side, stool running like lava and me holding pads under her to catch it. I’ve learned about dementia, Alzheimer’s, irritable bowel, Gerd, pleural infusions, infections, medications, nutrition, feeding tubes, heart attacks, bedsores, sleep apnea, pneumonia, aspiration, rectal prolapses, respiratory failure, and where to touch her and how to turn her when her hips were freshly broken. I’ve twice held her out straight to keep her from falling off the toilet when she had seizures. I’ve cleaned drainage from infected wounds, dressed skin tears, sat on a stool next to her bed with my head resting on the mattress whenever I could so I could be close to her and check her BP every half hour all night long. I’ve held her down through manic episodes, endured her biting, her scratching, and having my hair pulled. And I've held her close and comforted her when she was terrified or in pain.

I actually removed a catheter after days of begging the hospice nurses to do it because she kept crying and telling me that it hurt her and asking me to please, take it out. She was in horrible pain from her broken hips then, and after finding out later that there was an unidentified object lodged in the area of her bladder, which I’m guessing was left there when she was in ICU, I know that catheter had to hurt. And no one would remove it. She begged so one morning that I called hospice, asked for the nurse supervisor, and told her it was coming out and that she’d better tell me how to do. Yes, it could hurt her, she said, and told me how to simply and safely remove it. Because of her fractured hips, poor Mom couldn’t hold her legs upright for more than a second before they would start shaking and then collapse to the left side. What I had to do required both hands so I asked her to help me if she could, to try to find the strength to hold her legs up for just a second or two so I could do what I had to do. Somehow, she did. I braced her left leg, which was the weakest, against my shoulder and her right leg against my forearm, and with one clip of the scissors, it was out. I’ll never forget her big sigh and the look of relief on her face, or her tone of voice when she thanked me. All I could think of was how many days she had begged to be helped and in one brief second, she knew relief. I took what I had removed into the bathroom, and I cried.

We’ve gone through all of this and more. I’ve done everything I can to help her, to help her deal with each stage of dementia and her fears, to take care of her. And she’s tried to help me do things for her, even when she was barely able. Where she found the strength to hold those wobbly little legs up with very little help from me, I’ll never know. But she did. Or where she found the strength to walk from the bathroom after those seizures, into her bedroom and then climb into bed with me barely able to keep her on her feet, all because I told her I was afraid we'd never make if she didn’t help me. But she did. And we always made it. We’ve accomplished the impossible to give her a chance to hold onto life, which is what she still wants to do, and so that we could be together. These have been grueling, torturous years for both of us, but we’ve held onto each other, depended on each other, trusted each other, and neither of us would have it any other way.

I forgot about my TV show and sat there watching her sleep, while all these memories and more came to mind. And all I could, and can, ask myself is: How can it end this way? How could we have gone through all of this, fought our way through almost each and every day so that when her time came, it would hopefully be here, with me holding her and telling her that it was okay, and not to be afraid, that God would see her safely to a place where she could finally rest, and that everything would be fine. I don’t want her dying in a cold hospital, or even worse, in a nursing home, surrounded by strangers who take over and make me stand aside. That has been her greatest fear, and mine, too. I want her here, in the peace, and calm, and warmth of her own home, and with me. It’s what we’ve fought for, and the way we both always saw it to be.

I asked God why, why would He let us struggle the way we have, overcome the things we overcome, hold on so tightly to each other, and all to end in the way we’ve fought so hard to prevent. I told Him that if was His will that I lose what little I had left, so be it. I accept that. But I also asked Him why it has been so impossible for me to make time to earn even a small income so that Mom and I could make it to her end together? Why has everything I needed to do to keep us together remained so far out of reach?

Then I asked Him to help us with Mother in mind, and to please, please not let this happen to her. Not after all she’s gone through, all she’s suffered, all that she’s put up with as I struggled through learning about each and every thing that I had to do for her, all that she’s survived, just to come to the wrong end. I don’t know how she’s done it. I don’t know how I’ve done it. But we have. And it can’t end here. Not like this. Not yet.

Sharon

Thursday, June 17, 2010

Here We Go Again

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

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

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!

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

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

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