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