Beginning To Really Roll

Next week, we are scheduled to sign the lease for my new apartment.  Also, we are scheduling an appointment with a fellow who'll help me get certain equipment I'll need.  Plus, just today, I was put in email contact with the lady who will be the team leader of my aides, and we will build the team together.  I will meet her in person next week. too.

There are other things to do, as well.  September is going to be a busy month.

Great News

Well, I went to my urologist this morning, and he scoped me,, examining my bladder.  He found no cancer, which is really good news.  He also decided I need no more treatments.  I still have to have a scope every few months, but as long as that shows all good stuff, I'll need nothing more.  That's great news.

Not having to deal with the treatments and their after effects this next month will simplify the moving process..  Now, I'll be able to go out when I need to.  Now also, when I move, my new aides and I will be able to get to know each other in fairly normal circumstances.  That's great news, too.

Tomorrow Morning

I go to the urologiist again tomorrow morning for another probing.  Hopefully, he'll find I'm still free of cancer.  If I am, the pattern has been to start a round of treatments at the same appointment.

Going through a set of treatments and recovering from them while doing everything involved in my move will be a challenge.  We'll just have to find ways to get through the next six weeks or so.

Ain't nuthin' easy.

Timetables

If all goes as Laura has planned, I will be in my new home October 1, or, as she put it, in time to give myself a birthday bash.  My birthday is October 4.

This might be a good time to be leaving here.  For the past few weeks, I've been getting a lot of sandwiches for supper; presumably, so has everyone else.  Maybe that's because we've been in the summer doldrums, but they also seem to be having staff problems.  Corporate has been here checking things out today, and things seem not to be going really smoothly.  Of course, I have a limited window into what goes on here, but if this place is headed down, I'll hopefully be gone.

Picking Up Speed

There are lots of things to get done before I can move, and Laura is working hard to get everything organized.  We have paperwork to complete, my staff of aides to build, furniture to buy, and lots of details to work out.

September is shaping up to be quite a month.  My beloved Pittsburgh Pirates are even still in the running for a spot in the baseball playoffs after twenty straight losing seasons.  Wow!

Good News

By working with the scheduling of the aides I'll need, we've been able to stretch the budget I was given to the point that we can now go ahead with my move.  We're now discussing nuts and bolts stuff-- finalizing an aide schedule, actually leasing an apartment, nailing down the details of living.  This is a great, exciting time for me.

October 1 is still possible as a move date.

More Aide Stuff

Last evening, the aide who gave me supper stood through the whole process, which told me she didn't intend to stay long.  To be fair, Yodit sometimes stands while feeding me, too, but she always gives me all I want.  Anyway, I was right about yesterday. We got through supper quickly, which was fine, but she didn't bring me anything to drink with the meal; she just gave me one drink of water that was already in my room.

I'm so tired of dealing with all these different aides, several of whom don't seem overly interested in really applying themselves.

Bureaucratic Battles?

We're still trying to figure out why the preliminary decision to give me the funding I need to live by myself was not accepted in the final decison.  As it is now, I'm short 6 aide/hours a day, which is not good.  Since my bladder cancer, I have to use the bathroom several times a day, so I need someone with me virtually all the time.  Otherwise, I'd absolutely prefer 6 hours a day on my own.

There is the possibility that I'm caught in a bureaucratic mess.  Simplified, we are dealing with three piles of money I could access-- except if I draw from one pile, I can't necessarily draw from one of the others.   Each pile is administered by its own rules for specific groups.  The idea being, no doubt, to maintain control over those monies by closely defining how they may be used.  Guarding against misuse of taxpayer's money is a good thing, of course, and reform efforts generally try to limit the power of bureaucrats by writing tight rules.

Individuals, and the needs of individuals, however, don't fit in tight little boxes.  A better reform approach may be to put the money in a larger pool, write more general rules governing how it can be used, and allow administrators to use their judgement and experience.  They would be monitored, of course, by legislativve oversight committees, the governor's staff, the press, advocacy groups, the people directly involved, and eventually, if necessary, the courts.  Flexibility is critical when dealing with human needs.

A Setback

Well, the final decision from the state about funding for me didn't go my way.  The budget I was assigned is less than we had hoped.  So, the timeline for my move will likely be delayed-- just as I was getting fired up about being out of here shortly.

Laura is still working for me, though, and she is really resourceful.  She already has some creative ideas on how we might make the funding work.  I'll just have to wait and see what develops.

Possibly Down To Weeks

In an email she sent me today, Laura said chances were good that I could be in my own home by October 1.  That's the first real date I've had in this process.

We're now waiting for the state to finalize my budget.  Laura says she's getting impatient for that to happen, so I suppose it could happen any day.  I'm so eager to get on with this.

Calm Water Ahead

If all goes as planned, Charlene will be my morning shift aide for the next several days.  Also, Yodit is due back from vacation next week, and, with luck, she will be my evening shift aide on a more regular basis again.

That kind of consistency is what I hope I will get in my own home.

Getting Closer

Laura, the lady shepherding my case through the bureaucratic thickets, told me yesterday we may get the funding we need to secure aide help I need without bringing in housemates, or without doing any fancy bureaucratic footwork to get the staffing hours I need.  Laura has nimble tootsies, but if the BRQ, as it's called, goes my way, the funding will be clean.

Better yet, if this decision goes my way, we'll be able to proceed immediately to building a staff of aides for me and begin the moving process.  A preliminary decision has already been in my favor; we are waiting for the final one.  As Laura said, it's fingers crossed time.

Drinking

Last evening, an aide brought my supper, but didn't bring anything for me to drink.  She just gave me water that was already in my room, and not much of that.  It was the second time recently an aide has brought me supper minus a drink.

I've made it clear to the nurse here that I'm supposed to have plenty to drink every day.  So have my brothers Jeff and Jon.  It's in my file.  My usual aides do a good job.  Still, some aides don't bother.

I'm thrrough trying to make a change.  I'll just hope I have my reliable aides most of the time until I can move out.

Feeding And Aides

It's interesting how different aides approach feeding differently.  Some settle in and do a good job.  Others don't.

Sunday, for example, I had an aide I've had a few times.  She's okay otherwise, but she makes it clear she's not into feeding.  She gives me the minimum food and drink.  Sunday, she fooled with her hair all through my lunch.  Yes, I could ask for more, but it's frustrating.  By the time she's ready to stop, I'm ready to stop.

Hopefully, in my own home, I'll only have to deal with a few aides, all of whom will be interested in doing their job properly.

Apartment Hunting

Saturday was a big day in my life.  For the first time, I went looking for a home of my own.  Mom, my brother Jeff, my sister Kim, and Laura from Insights Consulting were all with me.

We looked at a model apartment in a seniors only building.  I don't much like being a senior, but that's in fact what I am.  The apartment was terrific. I'd expected to look at one-bedroom apartments, but the one we concentrated on had two and rent per month that is only a bit more than rent on a single bedroom.  That would give me the option of using the smaller bedroom as my computer room, which really interests me.  I might also be able to get a dog, which also interests me.  I love dogs, and I've always felt safer when we had one.

I really feel we are building momentum on this project now.  We still have some hurdles to get over, but actually getting out and looking at a place I might live feels like a big step forward.

In The Weeds

We are still in the bureaucratic weeds in the process of nailing down my new life, trying to determine exactly which government money I qualify to get, and which I should take, because that can have a bearing on what other funding I could get.  It's all very complicated.

Of course, politics in democratic societies are complicated.  Too often today, that truth is ignored, as American politicians roll out "solutions" to the nation's woes, and refuse to compromise.  Compromise and reform will be necessary across government in the years ahead, including in the funding programs I'll be using.  Ideally, the process of accessing such funding can be streamlined, simplified, and broadened in available resources, to aid a maximum number of people even if overall resource totals are not increased.  We will soon see how able our political leaders actually are.

Waiting

Last evening, I hit the call button because I had to go to the bathroom.  Nobody came for a half hour.  It was a painful, unpleasant half hour.  Yodit was my aide that shift, and she eventually came.  I know she would have come sooner if she could have.

In my own place, with an aide with me 24/7 in a thousand square foot apartment, I would no longer have to wait.

Eating Times

Yesterday, I didn't get lunch until well after 12:30, and didn't finish until after 1.  Fair enough; they get busy, especially because they seem to be short-staffed.  But then they brought supper at 4:30.

It's frustrating.  I never know when my meals will come, so planning any major work on my computer is impossible.  In my own home, I'll have more control over my daily schedule.

Sleeping

It's a good thing I've never needed much sleep, because I'm not getting much lately.  I'm still having to pee three times a night.  The way things work here, when I have to go I press the call button and wait.  The wait could be ten minutes, or twenty minutes, and during that wait I get wide awake.  So, after I go, it takes me a while to get back to sleep.  Doing that three times a night means I miss quite a bit of sleep per night.  I've taken to going to bed a bit earlier than normal and reading in bed less.

This is not a knock on the aides here; they are good about helping me, but this is a big place.  In my own place, my aide could get to me quickly, and hopefully I could get more sleep.

Liquids

I had a new aide give me lunch yesterday, and again I got very little liquid.  She didn't even bring a drink with the meal; she just gave me a couple drinks from water that was already sitting in my room.  Happily, Charlene gave me breakfast, and I had Yodit on the evening shift.  They give me plenty to drink, so liquid intake yesterday wasn't a problem.

Still, it's strange and frustrating how different aides approach the same job differently.

New Aide Stuff

I had a young aide last night.  She gave me a shower.  I suspected she'd never done it by herself before, and it turned out I was right.  I wasn't thrilled about her doing it, especially since a television show I wanted to see was starting, but we did it, and we got through it okay.

In my own place, I'll be able to schedule showers when I want them, and have aides I know and trust.

Eyes, Ears....

A few weeks ago, I was given an eye exam here at the nursing home.  Waiting for it killed the morning, and the exam confirmed what I already knew.  I see just fine.  This morning, I had my hearing checked, and the audiologist said I hear better than she does.

Hopefully, I'll be out of hear before they get around to the nose and throat business.

More Developments

Things are really beginning to bubble in my attempt to get my own home.  I will need an aide 24/7, and finding funding for that is a challenge.  Laura Fife of Insights Consulting, however, is a resourceful young woman.  She is piecing together possible arrangements that would allow me to live on my own, which is my preference.

Through her work, I have a couple of options that might work out.  Details need nailing down, and some things need to go my way, but we have real plans now.  It's exciting.