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,’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,

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,

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,

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,

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,

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,

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,