Taking A Shot

My friend Chrissy was over yesterday afternoon, telling me about what she'd learned at the writers conference she attended last weekend-- and about the editors and literary agents she pitched my novels.

Chrissy and I are now strategizing how best to approach the agents, following her pitch and their interest with solid proposals from me.  I'm finally getting to take a real shot at the big time, thanks to Chrissy.

Affordable Healthcare Act

In a 5-4 decision, the U. S. Supreme Court has upheld most of the Affordable Healthcare Act, usually called Obamacare.

The law faced two threats to its survival this year-- this decision, and the possibility that Republicans, who vow to repeal the act if they win the upcoming elections.  So, the fate of Obamacare is now back in the political arena, which is probably where it should be.

How this will affect the reform to help people move out of nursing homes if they wish is unclear.  If the nursing home industry decides to try to use whatever political muscle it has to maintain its market share of the old and the infirm, reformers may face a challenge.

Getting By

When I have my main aides, getting through my day can be simple.  Umfortunately, with Yodit seemingly out of the picture, I'm down to relying on Charlene in the morning shift and working through the evening shift with whoever comes.

Charlene has had the last two days off.  Yesterday, I had a really nice lady who did a good job, except she didn't pull the Depends tight on me-- she just pulled my pants up over them--  and when I peed in them, the pee leaked out.  Today, a student aide gave me breakfast.  It was frustrating.  He kept up a running commentary about the food right through the meal.  When giving me a bite, he actually said, "Here it comes."  The menu ticket that came with the food said I had apple juice and prune juice, and that's what he called my drinks all the way through, even though they were in fact orange juice and Ensure.  The same guy gave me lunch, and gave me the chatterbox routine again.

Consistency of care, hopefully, will be much better when I have my own home and a small team of aides to provide the care.

Decision Time

The United States Supreme Court is scheduled to announce its decision this week on the constitutionality of the healthcare reform plan passed by Congress in 2010.  The Court won't have the final word, however.  If it upholds the law, Republicans are committed to repealing "Obamacare" if they are swept to power in November.  If all or parts of the law are struck down, the Democrats can be relied upon to try to work around the ruling.  Such is the way of American governance.

The stakes are huge, not only politically but financially, as well.  A welter of issues interact in any attempt to reform the nation's healthcare delivery system, and among those is how the elderly and disabled will live.  There is a nationwide movement underway to de-emphasize the role of nursing homes and aid those who wish to live in a private home, group home, etc.  How that effort will fit into the overall structure is not yet clear.  If supporting people in less institutional settings turns out to be revenue neutral, the idea might be decided on its merits.  If, however, that approach is seen as being more expensive for the government, proponents of the approach might have to be particularly persuasive.

A lot is riding on the Supreme Court decision later this week, on the results of Election Day, and on what Congress and state legislatures do over the next few years.

My Writing

My friend Chrissy is pursuing her master's of fine arts in writing.  Part of that involved spending the last few days meeting with book publishers, book editors, and literary agents.  Chrissy told me she was willing to pitch some of the novels I've written to those people if she got the chance, so I emailed her some of my stuff that she could show them.

Well, she got the chance, and she must have done a good job on my behalf.  She tells me a couple editors plus agents from two prominent agencies are all interested in my work.

If I could start selling my novels, that would fundamentally change my life.  I'm eager to find out where these opportunities might lead.

Shower Day

My shower days here are Mondays and Thursdays, but I didn't get one yesterday.  The aide on the evening shift was a young woman I've had work with me several times.  What she does, she does well, but she tends not to seek out extra work-- at least, that's my impression.  To be fair, I've only asked her for extra once-- last night, to give me one of Charlene's brownies-- and she had no problem with it.

Maybe she didn't know I was supposed to get a shower.  They have files on the residents here for the staff, but it's clear new aides often haven't read mine, for example.  I didn't say anything about the shower because they sometimes do it as late as nine o'clock, so I was waiting.  By the time I saw they weren't going to do it, it was too late at night to fool with.

Yodit was the one who generally gave me a shower, so this is another example of what I'm missing without her.

Brownie Time

As Charlene promised, she brought me some of her homemade brownies this morning, but it wasn't quite the way she'd intended.  She told me she'd made brownies yesterday to bring me, but her kids ate them all.  So, Charlene got up about 5 this morning and made some more for me-- even though she has her brand new grandson living with her.  From my experience, that could mean sleep at night is limited for mom, dad, and grandma.  Charlene is a terrific lady.

On another matter, my urination problem is improving, but I still have it.  I'm going less frequently, with more volume and less pain, but I'm still going far too often to go back to regular underwear.  My aides have been great about it, though, and I try to work st so I'm not constantly calling them.

Relationships

Well, my aide Charlene made the brownies yesterday, but she forgot to bring them today.  She promises to bring them yet this week, though.  I'm very fond of Charlene.  She's a good woman, and she takes very good care of me.  If Yodit is out of the picture on a regular basis, I'll depend on Charlene more and more as my main aide.  Without Yodit on the evening shift, however, half my waking day might be a struggle now.

Several aides have been rotating on the evening shift, and I get tired of trying to remember how each of them work and trying to adjust to them.  Honestly, it doesn't help that I'm still struggling to get beyond the cancer treatments.

Maybe I'm going at this the wrong way, however.  Maybe I should just take the aides here as people who do their jobs and let it go at that, but I want some personal connections with people who do so much for me.  I had that kind of connection with Yodit-- still will, when I have her for a shift-- and now I have it with Charlene.  I want that connection with the aides who will be in my home.

Aides By Sections

I haven't had my favorite aide, Yodit, for a few weeks.  I miss her.  She would do anything for the people in her care, and she's a kind and generous young woman.  Yesterday, she gave me supper and told me why she hasn't been around.

It seems the man in the room next to mine gives the staff a hard time, and Yodit finaly decided she could no longer deal with him on a regular basis.  The last few days she worked with me I could tell something was bothering her.  The problem seems to be that aides are assigned sections here, not individuals.  They work with everybody in a section.  So, if an aide can't work with one person in the section, that aide can't work that section.

I suppose that means I won't have Yodit regularly anymore.  That would be a real loss for me.  I suppose it's possible they could get this guy under control, but I hear him yelling at night sometimes, so I'm not getting my hopes up.

Of course, if I had my own home, my aides would only have to deal with me and a housemate or two.

Brownie Time

My aide Charlene promised me a while ago that she would make me brownies when I reached 100 pounds.  Well, she weighed me again this morning, and I tipped the electronic scales at 99.9 pounds.  We both thought that was close enough.

So, she promised to make the brownies. Tomorrow is a day off for her, so she said she'll make the brownies tomorrow and brimg them in to me Wednesday.  Charlene is a good aide and a kind, caring woman.

The staff tells me it's been wild around here lately.  I hope I get someone I know and like in Charlene's stead tomorrow.

Family Reunion

Last weekend, an infrequent Anderson family reunion was held in Knoxville, Tennessee.  I didn't go, but my brother Jon and his family did.  One of the cousins is really into genealogy, and she's done extensive research into the Anderson family roots.  She even got DNA from Uncle Walt in order to do a study of where the family originated based upon genetic characteristics.  It turns out from that study that at least one line of the family came from Scandinavia.  We are Vikings, raiders and traders across Europe and much of Asia, and discoverers of North America five hundred years before Columbus sailed into the Caribbean.

Jon also told me that wood shacks, some with blue tarps for roofs, are still in the hills outside Knoxville, home to poor people.  Politicians and economists like to debate economic policy, and it's clear capitalism in its various stripes has produced more wealth for more people than any other economic theory to date.  Poverty remains, however, and, all else to one side, poverty is a brake on the economy.  It limits productivity and forces resources to be allocated to areas that do not maximize wealth creation.  Clearly, for all its strengths, capitalism is an incomplete economic theory.  But, of course, economics as a discipline has only been around for fewer than three centuries.  A more robust, rigorous theory that contemplates opportunity and basic needs and individual choice may be in the future.

Still Improving

It's been nearly two weeks since my last bladder cancer treatment of that set.  I thought I'd be back to normal by now, but that hasn't happened quite yet.  The pain when I urinate is much less, and I'm going more when I do go, but I'm still wearing Depends because I'm still going so frequently.  It's not quite as often now, and I can hold it longer now, but I still go many times a day.  Hopefully I'll be back in regular underwear in a few days.

When I am back to normal, we can go ahead with my home project.  My case manager is already contacting provider agencies, and we agree there is one agency I should look into.  We are trying to arrange a meeting with a representative of that agency now.  I'm eager to have that meeting-- and to get back to normal.

I'm also sure everybody who reads this blog has had quite enough of my bathroom issues.  Sorry about that.

Frustrating Time

I'm getting back in control of myself a bit at a time.  Last night, I called for an aide before urinating.  She didn't come for twenty minutes, and I wet myself in the meantime, but being in control that much is progress.

This morning, if my aide had come at the usual time, I was ready.  I didn't have my regular aide, however, and nobody came.  After a while I hit the call button.  An aide came about 45 minutes later.  By then, though, I'd wet myself.  Twice.

That aide also gave me breakfast.  All through the meal, she talked on her cellphone, first to her boyfriend, and then to a girlfriend about the boyfriend.  Feeding me-- doing her job-- was not her main focus.  I so wanted to grab the cellphone and fling it.  Eating took twice as long as it should have.  To be fair, I should say the same aide gave me lunch, and that went just fine.  She was still fiddling with the cellphone, but she wasn't talking to anybody.

If I had my own aides in my own home, all that could be avoided.

Aides

By now, I have developed a confidence and comfort level with a number of aides here, but I still get aides that I don't know.  That happened this morning.  She seems to be a nice lady, and we got through the basic requirements.

From what I've picked up from the staff, it seems this place is again having turnover issues.  Maybe it does constantly, I don't know.  Presumably, the strategy of institutions in such circumstances is to maintain a core of staffers, and bring in others as needed.  It's not the ideal way to build an organization-- if that's in fact how it works-- but if you're filling relatively demanding yet low wage jobs, it's probably what usually happens.

We are in the midst of a national debate about healthcare.  One element in that debate should concern the role healthcare aides will play in the future, both in nursing homes and in less structured settings, like group homes or private homes.  Holding the best people will likely mean more respect, more benefits, and more money for those who accept the responsibility for the daily physical care of our loved ones.  That will be tough to achieve in these budget-cutting times, but such care must be fit into an overall healthcare policy.

Finally Improving

Well, my physical situation is finally getting better.  Last Friday it was still bad, and I was getting frustrated, but Saturday things were much better, yesterday was better still, and today is better again.  I'm still going too frequently, but the intervals are getting longer, the pain is lessening, and I'm getting more control over the whole process.   In a few days, I'll be able to focus on more productive things again.

Also-- Charlene weighed me again this morning, and I'm up to 99 pounds-- well, okay, 98.9 pounds, and that's fully clothed.  Still, it's the most I've weighed since they started weighing me here, so it's positive.  Charlene is still promising to make brownies for me when I crack 100, so maybe she'll have to do that yet this month.

Still Struggling

I'm still trying to get over my treatments.  I'm still urinating extremely frequently, and it's still painful.  I have discovered that if I'm upright when I go, the urine will stay in the Depends instead of leaking out on my pants.  So, every few minutes when I'm lying on the floor watching television I get up on my knees, go a little, and lie back down.  It happens too often, and the need hits too quickly for me to get an aide in here every time.  Anyway, I'm not going through all my pants like I was after the first treatment.

I guess the problem is that my urinary tract was invaded and messed with three times in about two weeks.  My insides didn't have time to heal completely before they went in again, and again.  So, now I'm dealing with the accumulated effects of the three times.  I can't remember how long it usually takes me to get back to normal following these treatments, but I hope it happens soon.

Suppertime

Supper comes here any time from just before five to well after six-- and when it comes, it's time to eat no matter what I'm doing.  If I'm still on the computer, the aide brings the food over to my typing table, and we begin.  If I can get the computer shut down before starting to eat, that's fine.  If I can't-- and I struggle when I try to hurry to do anything-- we still start.  I try to tell them to wait sometimes, but that rarely works.

I understand they have to feed other people, but it's frustrating never knowing how much time I have online.  In my own home, with my own aides, I could set meal times and get more work done.

Multiple Aides

I had hoped to have my two main aides,  Chatlene and Yodit, most of the time while I was dealing with this cancer treatment round, but it hasn't worked out that way.  Yodit, especially, has been elsewhere a lot.

Fortunately, most of the aides who've filled in have been ladies I know, which has made the process easier for me.  Easier for them, too.  Sometimes four or five different ones have helped me through the course of a single day.  With all the times I've had to go to the bathroom, that spreading of the burden has probably made operations here more efficient.

Still, I hope I have Charlene and Yodit more consistently soon.  By the way, Charlene became a grandma today.

Getting Beyond The Treatment

I had my last cancer treatment of the set last Friday, but I'm still trying to get over it.  I'm improving, but it's still tough.  I feel better than I did this time last week, though, so maybe I'll be back in control of myself by the end of the week.  The pain when I pee should calm down, too.  The past few days,  if I'd been standing up when I urinated, the pain would've brought me up on my toes.  I'm still going way too frequently, as well.  Hopefully, that will work itself out, too.

My friend John Dickerson told me recently I had to get through this cancer business because I had things yet to do.  I hope he's right.  Most people at least leave children behind.  My genes, barring something approaching the miraculous, will die with me.  That's not terrible, but I would like to leave something behind.

Continuing The Process

My case manager has already been busy.  She is contactng providers-- that is, companies that provide home healthcare aides-- and she is looking at possible housemates for me.  Carlie told me about one particular housemate possibility and asked if I'd like to meet him.  Now isn't a good time for that, as I'm still trying to get over the cancer treatment, but by next week I should be ready to get going.

It will be an interesting process, and I'm looking forward to it.  Carlie, my case manager, is also well along in a pregnancy, and I'm not sure how that will affect my case.  Hopefully, we can get a good foundation established-- at least-- before her little one arrives.

Ending My Treatment Set

I had the final cancer treatment in this set this morning.  I was lucky enough to have the same technician I had last week.  Enisha is quick and efficient, and she made the treatment largely painless.  She also said I can ask for her when I need more treatments.

I'm not feeling too well at the moment, but hopefully I can get back to something approaching normal in a few days.  The aides here have been great to me during this whole treatment process, but I feel bad about the extra work it causes them.

Maybe by the time I have to go through this again I'll be in my own place.