I received a call from my case manager yesterday and, once again, the weekend agency dropped the Sat and Sun night shift.           [I wasn't surprised, the caregiver that was here Sat and Sun, claimed, as she left my home on Sunday, that she had been only told to work for the two days. Except she and I had spoken at length the night before about my needing weekend care and how much I appreciated her taking the hours. I have no idea how she can NOT mention just a little earlier that she wasn't returning NEXT weekend.]              Within the hour, I received a call from another agency confirming my address and location, letting me know they had someone available. Waiting now for confirmation. Caregiver Roulette. No wonder my nerves are shot.

I've been trying to read up on the laws and Rules within the state of Arizona as well as groups to join to make things happen, make things better, at least stability would be nice.

Home | Elderly and Physically Disabled Providers Alliance has some great info on how things work in general in government and more specifics in Arizona.

I finished reading the Arizona Administrative Code. Enlightening.

I've also been listening to podcasts and such of several disability advocates from around the country. There are a lot of us. We shouldn't have to fight so hard to make sure we have the simple 'privilege' of getting out of bed in the morning, with a shower and clean clothes. A lot of us could work and be functioning citizens if that seemingly simple event could be guaranteed.

So, as we go:

I've been working with my case manager to find out, once more this week, calling all of the agencies once again and she has a hit. An agency DID indeed agree to take my Saturday and Sunday nights. Intake is in the morning and the weight off my shoulders was PALPABLE. We shall see how it goes.

I still want to know how the system works. And it is stunning how many people who WORK in the system itself have NO idea how it works nor do they want to know. When I ask about the details on the HIRING of the agencies, most people have said, "huh, I don't know, let's see what I can find out." And then, you know, nothing. When I called Customer Care today, the agent, when I asked "how does the system work? How much do the agencies make on clients? What are their responsibilities to clients?" And his response? "Why are you asking? Why would you want to know this information?" The suspicion and doubt I am presented with is stunning. Why is it so shocking to know that a client, totally dependant on the the public health care system, would want to know about their own rights and responsibilities? I cannot hold the agencies accountable if I don't know what is in their contracts. The agent tried to tell me the contracts are confidential. I have to look further, but I am fairly sure that federal funds are public knowledge. But, damn, it doesn't AFFECT him or his job, so why get defensive when I ask the answers to questions I have about my care?

I've spent the last few days reading up on Arizona Administrative Code, all of it. I still have a lot of reading in front of me.

It has been FAR too long for posting here. I SHOULD be posting here far more often with every issue I have with my daily care and the health issues of everyone.

Things have not changed. Caregivers are STILL Paid minimum wage, less than fast food workers get. So, more pay and less responsibility for another person while flipping a burger, frying chicken. I just reread all the posts from what seems so long ago. Deja vu all over again. And little has changed. It's still a struggle to find good, constant, committed caregiver. They do this for a while, then want, NEED to find a better paying job. About half of the caregiver are unable to maintain a vehicle. And especially evenings and nights, why go to a job if your car isn't likely to make the trip back home?

Yet agencies WON'T pay the caregivers AND clients what is deserved for the work. It shouldn't be a minimum wage job. But Health care shouldn't be a for profit business, either. Agencies with a profit margin are cutting into employees pay, that's how profits work, too. When client care is done for a profit, clients suffer. Clients get minimum care, minimum time, minimum respect and minimum consideration. Clients are the disabled and the elderly, populations of people who should be treated better. A population of people who shouldn't be treated as a bother and as cogs in the business of profit.

Caregiving is difficult. Difficult on the caregiving and the client. Being in need of care is an unending, daily part of LIFE. I have to trust people I do not know and explain over and over what I need and how it needs to be done. When you care for another person, you ARE responsible for their wellbeing, health, respect and happiness, too. And yes, You have to respect and listen to the people to whom you're assigned to care. That seems obvious but it isn't. I've had a lot of people come into my home, convinced of their own skills and knowledge of the work yet totally oblivious. I've been verbally abused enough to learn I have to be saccharine with some to keep a peace I should never have to ask for from someone in MY home. And just as many who seriously have no idea or care that this IS a job they should be more serious ABOUT. They come into my home bored, undertrained to the point that they really have no idea what they are walking into and some DO take it out on the clients. Meanwhile, I've had to train most caregivers on everything I need done. Most have only seen but never used a patient lift and never, ever seen a bedpan. And when they are sent out to random clients, they've had no explanation of who or what they are walking into when entering a client's home.

And, at least for me, an unfortunate experience that happens more and more is an active contempt from staff of the agencies. Though some do sincerely care and want to do the best they can, far too many seem to feel as if clients and caregivers both are more of a nuisance. Those who DO care are discouraged from helping by way of the mere mention of "liability concerns." It's difficult not to hear the tone of annoyance and the sighs of boredom from some of them. Far too many "no call, no shows" happen and when I've called in to report such an incident, the responses should never be, "so, don't you have someone to help you?" in an irritated tone, as if I interrupted THEIR day.

Agencies and even the government branches do NOT want the actual responsibility of Caring for those who NEED Care. They SURE do want to get PAID for services, though.

I am feeling a bit dark today or at least feeling it bubble to the surface. I am tired, I am angry. I know I am feeling unmotivated right now, though I am working on some online classes and such. HTML, CSS. Working my way to some more graphics stuff not too far in the future. But keeping busy isn't the fix for the larger reasons in my head and around me right now. 

I am getting older and likely watching too much "news." Our political system is a joke if the GOP line up and media circus is any indication. And it's just the pimple on top of too many years of politics gone wrong. I have always had to fight for the care I think I deserve from a system that is becoming more and more dismissive of the people it's supposed to take of and build around. It seems to be a system legislated by those with no experience and no compassion for the very people who need both. 

I am tired.

Another day, another issue to deal with for my life. This morning was a good start, with a call from a nurse from the nursing company, with questions and confirmation that they CAN fill my request for the catheter, but she had no confirmation as to the actual equipment. An easy thing to fix.

The second thing was less helpful. Thru my afternoon caregiver, I found out today that my weekend caregiver quit. And of course, no matter what they say, I have never had a caregiver who quit and called me or texted me to giver me a heads up. A thing they ALL PROMISE to do. "If things change, I'll be sure and let you know." Yeah, sure. Whether it's guilt or dismissal, it's no less a pain in the ass. So, I had to call the care agency office with a little "play dumb act," to find out more information, because shockingly, they did not call to tell me, either. This particular time, it was because they know they had me covered and they are short staffed this week. This company usually calls to let be a part of the organization of my care. But, in the past, I've had companies who NEVER called, had no care or understanding that I wanted, should and NEEDED to be a part of my personal care. Because far too many people who work in home health care still look at the clients, those of us who use and need services, as LESS, as second class humans, not even worth allowing participation in our own care. I am lucky, now, the current agency is, mostly, good at including me in my OWN CARE.

So, NEXT weekend is still not completely covered. Joy.

I'm stressed. I take into myself everyone else's drama and anxiety. And I think I might, despite all the effort I've gone into, have an infection. And I do not want to go into tell Dr. Jansky after all I did to get the catheter arranged. Keep drinking water. Yup.

So, this was a second day at my Doctor's clinic. Me and two friends are planning to travel to Austin, for what think is going to be an amazing wedding. I want to make the trip easier for my friends, so I'm attempting to arrange to have a catheter for the trip. I've had it done for camping trips a few years ago. I usually use a bedpan and I know it's complicated. For a 13 hour drive, I don't want to have to get in and out, abusing my friend's back. 

But, of course, paperwork makes things convoluted. I was being discouraged from getting what I wanted. It seems even this request is seen as out of the ordinary and difficult to grant. Once again, I had to work for it, had to explain why it was important. If I'd been asking for a permanent catheter, they were okay with it. But at least one urologist basically stated that it wan't worth their time to work with me. The concept that I have an adventure planned is just too unheard of to deal with at all. As if I am wasting their time, it's truly disappointing. 

During the first day, my blood pressure was really high and I was asked to return the next day, as directed by the nurse practitioner. So, today, I had blood work and a meeting with my doctor. He is much more agreeable, knows I know what I am doing and the physical possibilities. You know, actually knowing what I want, what is good for me and how to go about it. Rather than being in a system that wants to make things easier and smoother for THEM. Even the simple request for a little adventure breaks their brains. The system does love to warehouse people. I'm not one of those people. 

So, tonight, I am watching a lovely happy/sad movie and feeling my blood pressure drop. I think the anxiety from making arrangements and internalizing a lot of my friends' stress has taken a toll on me. So, you know, relax. I'm ramped up and wanting things to go PERFECT. And there is no such thing. But it will be an amazing trip. And it scares me in a good way. 

I was recently asked to give advice and suggestions to someone interested in providing life counseling to the disabled and their family caregivers. I was asked because of my personal experience in advocating for myself and my disability needs, as well as my personal needs and lifestyle choices. This is what I wrote:

"As for me, it's been my whole life. Karen, my Mom, and Anne raised me to be self relent and independent. I was sent to Muscular Dystrophy Summer Camp at age 5 and I remember Mom, who was the camp nurse that year, telling me how to deal with making sure I was taken care of well. Basically, to ask for what I needed and wanted from the volunteer provided for me. I wasn't raised to be embarrassed or ashamed of my limitations. I've seen so many others, born with disabilities or becoming limited later, act or treated as if they are less as people. I've never felt as if I should limit what I want or need. That is something a lot of people have trouble with and it's something in which you would have to council others. A lot of people give up. It IS exhausting to constantly defend and fight for ones personal rights and needs, be it equipment needs or even the clothes you want to wear. And really, in general, the system does not encourage a lot of self reliance. The system, rather, only wants to provide the absolute bare minimum and you have to fight HARD to get a lot of needs met. Each county, city, state and the federal government have different laws, rules and obstacles. A huge part of the system loves the idea of "Warehousing" and limiting people, usually written in as funding limitations. Times have changed and it fluctuates. Some times, the ideal of "Quality of Life" has been the ideal. When politics and public opinions changes, it's all about saving money, usually to the detriment of those who need assistance. And more often than not, those who need help and advocacy do not get it. Case managers and the system in general only do the minimum, due to laziness or just plain over work from a system that is not REALLY designed to maximize "quality of Life." Meanwhile, those who need assistance either do not know how or are afraid to ask for fear of getting nothing at all or suffering some form of retribution. And trust me when I say that retribution does happen. Too often, those who need care get punished for asking for "too much." The unfortunate truth is, those who need help are too often penalized for that need. Like I said, it's exhausting. I know you've heard of the abuses that happen, in nursing homes, in hospitals, as well as in peoples' own homes, whether from lack of training or just plain apathy and laziness. It's difficult to defend one's needs when one literally cannot speak for oneself. And not all care givers, family and friends know how, or frankly, want to advocate or help at all. Sometimes, care givers, family and friends are also just plain tired, sometimes angry. I've heard and seen a lot of horror stories and had a few of my own. 

As for coaching clients and their caregivers, you NEED to know every program, funding option, at least basic equipment options, how case management and attendant care options operate, SSI, SSDI, Medicaid & Medicare, section 8 housing, food stamps and/or where to find ALL that information.  I would say above all, the client must be informed on what they need. Whether a new disability or a life long one, if you don't even know WHAT your disability IS and all its facets, how can you know what to ask for? Knowing what your equipment needs are and ASKING for them ALL, which usually means  Doctor's scripts. Evaluating the living situation is also important. If you cannot get into the bathroom in your own home, changes should be made; move or renovate. I've seen disabled people who only bed bathe, have to wash their hair outside, brush their teeth in the kitchen. It's gross and inhumane, really.  

I think my biggest pet peeve is so many people just give up, don't even TRY. So many disabled people feel like a bother to everyone around them and too many ARE treated that way, so they never ask for what they really need or want. Literally as if when your disabled, you aren't allowed, your needs and wants are expected to be diminished. Ever notice the word invalid has two meanings? And it IS difficult, especially when you've been independent all your life, to suddenly HAVE to ask for help. It sucks, but you HAVE to, why struggle when you can make it different, better? I've run into a lot of obstacles, mostly because I specifically do NOT lower my expectations, I do NOT allow myself to be warehoused or minimized.  An example? I use a patient lifter, have since I was 12 years old. The Hoyer design was the first, simple and sturdy and I have used that one all my life. About four years ago, mine needed repair, the hydraulic cylinder went out (as they do) and I was told for its age I could not have it repaired. The equipment repair company sent me a replacement, another brand and design. It sucked for many reasons, including that it didn't rise up high enough to get my butt onto my bed, the caregiver had to pull me UP, sort of missing the point of USING a lift. Within three weeks, I had to ask for two replacements because the first one had a wheel break off and the second one also had a bad cylinder. So, with the third of the same crappy design in my house, I asked if I could just order a new Hoyer design. The equipment repair company manager told me, "no, this is all there is, the county contracts with one vendor for one design for all county clients and no one ELSE has ever complained." My response? "Everyone else is either ignorant or lying to you, this lift design is flawed. And this lift doesn't work for ME." I had to show him how it didn't work for me and all he said was, "huh." I decided to ask my Medicare insurance company if I could order the Hoyer design, to which THEY said "sure, with the prescription, you can get whatever you want." So, I did and I now using a Hoyer, brand new, ordered through a different repair company. So, I get what I need and what I know works best for me and at the same time I've developed a reputation for being a pain in the butt. And that becomes the issue for a great number of clients: bullied into taking equipment and services that don't necessarily serve their needs because the system and people therein are either lazy or ill informed. But, squeaky wheel and all that.  I've been doing this since I was 18 years old and I can provide more examples if you like.

You are also asking about relationships, barriers and challenges which is a long story, too, of course. I'm 46 years old and I have GOOD, trust worthy friends who I know have my back. It has not always been that way, part of growing up is learning who you can trust and who is going to do you more harm that good in your life. I do my best to NOT depend on my friends for my daily care, though, that is the quickest way to burn someone out and they LEAVE, for good. I have made sure that my daily care services are consistent and dependable and all my friends know this, too. They would, should I need, come running and they have. I make sure my more trusted friends have keys to my apartment. Though, I do NOT tell that to the care giver agencies: they WILL use that against you, makes them lazy because they figure you are covered and they don't have to work so hard. Trust me, that is also from experience. Over all, you HAVE to make sure your friends and family are NOT your main care givers. I've had case managers tell me I do not deserve care givers because I have friends and significant others who should be doing all the work. Wrong. And as for dating, I'm single right now. I've dated on and off, no one has stuck it out. The irony is, I seem to attract people who think I need to be saved & taken care of OR people who want ME to take care of THEM. Either way, it ends, because it isn't at all as they thought it would be, because this is a DIFFICULT life. I am VERY out spoken, independent and sometimes called intimidating because I stand up for myself and also expect people to do what they say. To many people, standing up for yourself is a very bad thing. Gah. Actions, not words are key. And I try not to suffer fools anymore. Been there, done that. As I've said, it's exhausting. 

I also can go on about how care givers should be paid a LOT more and that minimum wage should be raised significantly. When you can get a fast food job making more than actually taking care of PEOPLE, our system is broken and NEEDS to change. Everyone you ask will say we should take care of each other but when it comes down it actually doing it, no one wants to PAY for it. You have to fight for your rights and needs, everyone. It also becomes a political issue. I don't know your political leanings, but when I see politicians, mostly the GOP, suggesting that public services such as SSI, SSDI, Medicare, Medicaid, public health care, food stamps, section 8, et al. , should be deeply cut, defunded or privatized, I worry that my care will disappear. ALL of those things should be increased. ALL. 

"