Pills In The Shower

An odd thing just happened.  I was in the shower room with my aide a few minutes ago, about to get a shower, when somebody knocked on the door.  My aide told whoever it was to come in.  I hadn't had my daiily pills yet, but soon a nurse was standing behind me with the pills and a partial Coke I'd had in my room.  So, she'd obviously gone to my room, didn't find me there, grabbed my Coke, and took off to find me.  She gave me the pills in the shower room, and my aide gave me the Coke to wash them down, then gave me the shower.

I guess you have to give it to the nurse.  When she decides to give a resident their meds, by golly, they will get the meds.

Frustrations

Yesterday, a high school student gave me lunch for the first time.  She was obviously very nervous, but we got through it just fine.  Afterward, she helped me get to my computer, which I had arranged the way I needed it.  Before I could stop her, she moved everything, which made working on the computer yesterday afternoon harder than it needed to be.

Later yesterday afternoon, another aide came to give me a shower.  When we got in the shower room, she obviously didn't have everything planned out.  Before it was over, we were all over that room.  I got the shower, but not without concern on my part.  Lots of things could go wrong in there.

Both of them are nice young women, by the way.

There are a few aides here I'm comfortable with-- they know me, I trust them, and we've established ways of doing what needs to be done.  When I have them, my day is pretty easy.  So, dealing with new people is increasingly frustrating.  I know it's going to happen here, but, like everyone elso, I have my bad days.

Process Moving Along

The process exploring whether I qualify for government aid to move out of the nursing home and into a home of  my own with help from aides has taken another step forward.

A woman from the consulting firm hired to assess my need for aides has begun that assessment by calling the nursing home and talking to a nurse here about my requirements.  We're off to a pretty fast start, as these things go.  The next step, I assume, is for the woman to come out here and interview the aides who work with me the most.  Once she has the data, the woman will recommend a budget for my case.  That done, I'll be assigned a case manager, and we'll go from there.

Hopefully, the woman will meet with me while she's here.  I'm told that's not always done, which seems odd.  The whole exercise is about my wishes, and her assessment, as I understand it, is about my physical capabilities.  Meeting me would seem an obvious thing to do.

Tough Night II

Last night, I was again unable to use the urinal, and again, the aide initially refused to take me to the bathroom.  She told me the nightshift supervisor had said I needed to use the urinal because I'm too weak at night to go into the bathroom.  So, I had to call the aide a second time.  That time, she took me to the bathroom, and I was able to go.

I don't know if she took me on her own authority, or if she got permission after the first attempt, or if the nightshift supervisor's policy was overruled by the unit manager's policy, who said after the first time this happened she'd told the staff I was to be taken to the bathroom whenever I asked to go.  Bureaucracy is unavoidable in an organization as big as necessary to run a nursing home this size, I suppose.  Whatever, I'm grateful she took me.

Bureaucracy wouldn't be necessary in my own home, however.  All such issues could be worked out between my aide and myself.

Lunch

I had a new aide this morning, and she was perfectly fine until lunch time rolled around.  Then, she gave me three bites of food, most of an Ensure, and that was it.  She made it clear she didn't want to do it anymore, and I went along with it.  Trying to make somebody feed me when they didn't want to never has seemed reasonable to me.

New aides who feed me often give me a bite or two and ask me if I'd had enough.  I always say no, but then it becomes awkward trying to get through the whole meal, feeling that aide didn't want to be doing that.  Today, I didn't feel the aide gave me a choice.  She was nice, though; it seemed she was doing what she usually did.  Maybe most people here don't eat much, I don't know.

My regular aides give me my full meal.  That's what would happen in my own home.

Musical Aides

Since yesterday morning, I've had to work with 7 different aides, including one high school student.  That doesn't include the aide who came when I needed to use the urinal overnight.  Happily, I knew all the aides, so it was no problem, but it could have been a tough time.  The seventh, who happens to be my favorite aide here and the one I have the most, told me she was sick with a headache and only came in today because she couldn't find anybody to work for her, so if she goes home early I might have to deal with another aide or two yet this day.

I understand aides get sick, go on vacation, etc.  I assume, though, that if I worked with an established, approved agency to get my aides, I'd have fewer aides to adjust to.  That would make it easier for me.

Yesterday Afternoon

My aide took me down the hall to give me a shower yesterday afternoon.  Before we got there, though, another resident yelled at her and told her he wanted to get out of bed.  So, she had me wait in a commons-like area while she helped him.  She had to get a lift to get him out of bed.

While waiting, an elderly man sat in a wheelchair near mine, his chin deep into his chest.  He kept calling for help, never taking his head off his chest.  The nurses sitting at a nearby station ignored him.  I guess they knew him.  Another nurse came along and told the man he was fine, but as soon as she left him he started calling for help again.

I've also heard about other residents here.  The aides and nurses have a tough job.  You couldn't really blame them if they had bad days sometimes, except for the fact that they are supposed to conduct themselves professionally towards all their clients at all times.  Currently, I have two aides who work with me most of the time, and they are both very good.  Hopefully, I can keep them both for as long as I'm here.

A Time Of Opportunity

I am 57 years old. Many people my age are looking forward to retirement. Me, I'm still trying to establish something for myself. That being the case, this is the best time in history for the disabled to take care of themselves financially.

Changes in the American workplace recently have given flexibility to people generally. Meeting goals often takes precedence over working set hours. The Internet can be a dangerous place, but it also offers vast opportunities. Telecommuting is increasingly acceptable for everyone, and it can be perfect for the disabled. Many people make their living on eBay; that's another option. Online research makes many careers possible for those who can't necessarily get out and about.

Turning those opportunities into real money can be tough. However, economic self-sufficiency can be a big piece of maximizing personal independence.

Reform

The next few years will likely go down as a period of reform of government programs across the board. Much of that will be due to staggering, debilitating debt at both the federal and state levels. Some of it, however, will flow from a political philosophy that favors smaller government in principle-- and some will be fueled by a desire to match government resources more closely to specific human needs.

A coalition of disability groups is now engaged in an attempt to get Indiana to build more flexibility into its programs designed to care for individuals who need assistance in terms of housing, personal care, etc. The push by the coalition is to provide individuals and their families with more options, and more flexibility in using state-provided funds. The effort seems to be making good progress. Ideally, Indiana can create a model other states can adopt and build upon, opening society to increasing opportunities for people with disabilities.

Ideally, too, the process won't stop with the disabled. Humanizing government social programs, both in scope and in approach to services, can put the focus back on individuals at a time that too often sees people as members of particular, specific special interest groups. The soul, therefore, becomes a political character rather than a unique, worthwhile expression of its own. Maximizing personal independence is finally about more than homes and aides, and about more than respecting the elderly and the disabled.

Follow Up On Saturday Night

It seems Misty the unit manager has posted something about my problem Saturday night in the section here. See yesterday's blog post for what happened. Nurse Beth and Aide Charlene asked me about it today. I like both of them; both are very good about helping me, and they were both ticked the aide had refused to take me to the bathroom.

I hope this doesn't blow up into something. I didn't report what happened to get anybody in trouble; I just don't want that to happen again. The aide involved-- I don't know her name-- had worked with me before, and she was perfectly willing then to take me to the bathroom. She told me Saturday night that her instructions were that I was to use the urinal. Maybe she misunderstood, but I think she was doing what she thought she was supposed to do

Tough Saturday Night

Since I had bladder cancer, I generally have to urinate in the night. Usually, that means using a urinal, but sometimes, for some reason, I need to sit on the toilet. Saturday night was one of those nights, but the aide refused to take me to the bathroom, saying her instructions were that I used the urinal. This aide had taken me to the toilet before with no problem, so I don't doubt she was following instructions. I tried again two hours later and still couldn't use the urinal. Also since the cancer, when I need to urinate, I'm in pain until I can go. So, Saturday night I spent several hours in pain, waiting for my morning shift aide to begin work. I hit my call button as soon as her shift started, and she came and took me to the bathroom.

I sent an email outlining the situation to the management here, and the unit manager over my area assures me it won't happen again.

In my own home, with aides with whom I have a relationship, however, I don't see something like that happening in the first place.

Wildlife Observing

Another thing I'd like to have in my own place is a bird feeder. My brother Joe got me one that I had for a few years, and I enjoyed it. He hung it right outside my bedroom window. I had my computer set up in front of that window, so I could watch the feeder all afternoon as I worked at the computer.

It was quite a view. I was maybe four or five feet away from the birds, and they had no idea I was there, so I could watch them from up close. Several species visited the feeder, from little sparrows to cardinals and blue jays. Even starlings tried to perch on the feeder, but they were too big.

Anyway, that's one more thing I might have in my own place. It's not important, but it would be something I'd enjoy. On the other hand, the birds made quite a mess under the feeder, so any perspective landlord might nix the idea. Maybe we'll see.

Architectural Design

Living here in the nursing home, I've learned something to look for if I ever get to shop for my own place.

Here, I have what I guess you'd call a half bath-- toilet and sink-- right off my bedroom. It's extremely convenient. Everywhere else I've ever lived, the bathroom has been down the hall, or across the hall, or outside my bedroom. I like the privacy and convenience of having it right here. So, when I'm looking for my own place, one plus will be a bathroom right off my bedroom.

The shower here is down the hall. Ideally, I'd want a full bath off my bedroom, as transferring quickly from the shower to my bed would be the simplest way to get me dressed, for both me and my aide. I expect my place will be small, so a tub down the hall in my private home would be okay, but a half bath directly accessible from my bedroom would be very nice.

Room Temperature

There's an odd situation with my rooms here. I'm told they're on a different heating and cooling system, for whatever reason, than the rest of this wing of the nursing home. This winter, that was a good thing, becauise my rooms were nice and warm-- the aides who came in them, in fact, regularly said how hot it was in here. I felt comfortable. Now, however, the situation is reversed. It's cold in here, and has been for a few days. Staff have told me they will tell somebody about it, but it's still cold.

I guess things like that happen in big buildings like this. In a private home, I could set the temperature largely where I wanted it.

Eating Late

Both yesterday and today, I failed to get my lunch until well after one o'clock. Both times the aide who gave me lunch apologized to me, and neither time tried to rush me through eating, so I haven't made this an issue. My supper has also arrived well after six a couple times recently; that aide told me she had to feed somebody else first. I seem to have the reputation here of being a patient man.

Something seems to be going on here. Some aides have quit, and others have been fired, or so I hear. The administrator seems to have recently resigned. That would put the staff still here under more pressure, and indeed about every aide or nurse who came into my rooms yesterday told me what a wild day it was.

Since I don't eat breakfast, and since I do my work on the computer during the afternoon, eating lunch so late is a problem. I've had time to do my email and keep up both blogs, but that's about it. In my own home, with aides who could be more focused, I could establish and maintain a schedule that would give me more time to pursue my goals and interests.

Bright, Noisy Nights

You'd think they'd try to keep things calm and quiet at night in places like nursing homes so people can sleep, wouldn't you? Well, in my experience here, that's not particularly what happens.

Most nights here, well into the morning hours, I hear television shows, movies, or music. It might come from residents' rooms, I don't know, but it's clear. I also hear talking and laughter from aides. I hear that because the door to my room is open. They even block my door open, presumably so they can get in here quickly if they need to-- but that also lets the light from the hallway in. I block it with my pillow.

I can't say all that keeps me awake, but I do look forward to my own home and quiet. dark nights.

Consistency

For the past couple of weeks, I've largely had aides I've been comfortable with, and the more I've worked with these same few aides, the easier things have become. By getting to know these few and how they approach the work, I can anticipate how things are going to go, and it allows me to plan ahead. I'm a planner. The aides also get more relaxed with me the more they work with me.

This period won't last, of course. Staff comes and goes in big places like this. In my own home, working with a home healthcare agency that has a low turnover rate among its aides, hopefully such calm, stable times would be the rule.

Budget Concerns

Though the State of Indiana seems to be in reasonably good financial shape, the U. S. Government is deep in debt. Getting out of that hole will require reform of Medicare and Medicaid, among other things, and in this case, reform will mean substantially reducing the money spent on those programs. There is no option. So, if I can get into my own home with the help of government, will I be able to count on having it for as long as I need it?

Well, probably. There seems to be consensus among politicians that nothing should change in this area for anyone 55 and over, and I'm 57, so if this works out, I should be okay. Also, part of the reform may involve turning a lot of programs back to the states. So, if Indiana is convinced helping people stay out of traditional nursing homes is good public policy, I should be okay again.

Still, there are no guarantees in politically uncertain times. If the economy collapses again, thus both robbing government of tax revenue and increasing government spending, many bets might be off. I'm going to continue trying to sell my writing, and continue trying to find work. Just in case.

Broadening My Options

Mom and I used to take a day every so often and come over here to Indianapolis from Muncie and go to the mall-- not to buy anything, especially, but just to look around and be together. I also went to the occasional movie. Mom would take me to the theater and come back to get me when the movie was due to be over. I'd wander around Ball State's library on my own sometimes, too, just poking around for interesting stuff.

I'd enjoy having the option to do things like that again-- just get up in the morning and decide to do something that day. Now that I live near Indy, there are lots of possibilties, from my old friends the malls to movies to museums. Or maybe go to the occasional game. I've watched basketball games from Hinkle Fieldhouse for as long as I can remember; it'd be fun to see one there in person sometime. Similarly, I'd like to go back to Muncie and watch those mighty Ball State Cardinals a game or so a season.

There's a social director here, and I know they do things and go places. He has asked me if I wanted to join the activities, but I don't. I'm not really a social sort, and I'm not interested in doing activities just to be doing activities. If I had my own home with my own aides, maybe I could do some things that I want to do just because I want to do them. For most people, that's a big part of personal independence.

A Step Forward

I got word yesterday that the process aimed at getting me out of the nursing home and into my own place is moving forward. I have a place on the waiver list required for the process to continue, so that's one more hurdle behind me.

The next step is for the state to hire an independent person to determine exactly what kind of needs I have and how much help from aides I would require. To put that together, the person will interview me and the aides here who work with me the most. That might turn out well in my favor. Fairly often, a new aide will come with a regular aide of mine to watch and see what needs doing and how to do it. They also talk between themselves, as if I wasn't there, or couldn't hear, or couldn't understand them, which is odd. Anyway, my regular aides often tell the new ones how self-sufficient I am. I assume that will be a positive for me.

So far, this process has moved along at a good pace. I have a feeling this might be a point at which the momentum might slow, but I hope not.

Starting And Stopping

This has been a fractured afternoon.

First, lunch was a bit late-- nearly one. After that, I got on my computer, as always, but my aide for the morning was soon back to take my blood pressure. That was 99/65, by the by. Then, my aide for this evening came along to give me a shower. While I was writing this post, yet another aide came in to give me a fiber tablet.

I couldn't do a major writing project here. For those, I need uninterrupted hours to concentrate. True, they take my blood pressure maybe once a month and not always when I'm at the computer, but I never know when somebody might come in here for some reason. I try to accomodate their schedule, knowing they have other people to care for, so I go along. I also understand that most residents here probably aren't trying to work, so the staff is used to having essentially free rein.

In my own place, with aides who work for me, I could set my own daily schedule. I could eat my meals largely when I want, schedule showers for morning or evening, and give myself more time to work. Taking my blood pressure, if needed at all, could be done when I wasn't trying to do something else.