Musings from the Phoenix

This was my 4th Conflikt, and I think it may be my favorite. (Of course, I probably said that about each of them in turn, which just goes to show that they are getting more and more amazing as the years go by. And of course, we's FIVE. That helps!)

Every concert I saw was great, I only regret that I could not be a clone and attend two at once, because there were definitely concerts I wanted to hear that were scheduled at the same time. So much excellent music! more to learn! more songs I want to sing! I especially liked Lookingglass Folk, and not just because Steve and Naomi are friends of mine. I was deeply touched by their music and their message. Ditto Talis Kimberly's concert. I really have to thank Mickey Phoenix for allowing me to learn a whole new phrase in ASL that I hope I can use one day....not in public, however. Plus I'd just like to whack him for spoiling Leonard Cohen for me forever. My own little concert was actually fun for me, and much less scary than singing in a big circle. (Especially since the night before, when I went to sing in the circle, I had a giant brain fart and the melody completely escaped me! argh!)

Scheduling, overall, was really good, and things stayed more or less on time. I found that very helpful. I liked having a Big Filk Room and a Small Filk Room, and a choice as to what I was up for. 

We played the con CD on the way home, and I have been, since sometime last evening, humming or singing aloud the refrain of "Strangers no more, we sing....and sing and sing and siiiiinnng..."

Thanks to the concom and all the volunteers who make this happen. Thanks to the guests who are so talented and gracious and giving. Thanks to the performers who gave of themselves and their music. And thanks to every attendee, for helping to make it amazing, once again.

I am home in Oregon. I arrived early evening on Tuesday the 10th, and have been plowing through the accumulated chaos since, connecting up with my loved ones (oh, how I missed them!) and taking care of business. It's overwhelming, but more in a good way than the time in Michigan was.

After a great deal of work, and 2-1/2 weeks of runarounds and diversions, my mother is now in an extended care facility. We had to get a lot of legal things sorted out first, because the date the physician does the referral is considered the date at which Medicaid looks at your assets. There was a lot of driving, taking mom to the doctor and the ER (she fell 3 times in 2 days, but actually did no damage except a cracked rib).  There were a lot of phone calls and (better) emails with the facilities and with the doctor's office. We started the process on 12/28 and she finally was admitted on 1/10. All of those 12 days were days in which she was getting measurably worse cognitively, and measurably more agitated and combative despite prescribed medications.

We found a facility which would take her as a private pay patient initially, although she only has about 4 months worth of assets to spend paying for it. It was not the highest rated facility out there, but actually it was the one my one brother and I felt best about. It's smaller, the rooms are larger, and they use a locking code on the door to keep patients in who have dementia. The other facilities use electronic ankle bracelets, and we knew that wearing one of those would cause our mom a great deal of distress. The other brother (who lived with her) had to wear one for 2 years after he got out of prison.

The thing that I liked about the facility was that the patients, generally, looked pretty happy. I spoke to many of them as we took our tour.

I am sad that my mom needs to be in a care facility, and yet glad because they can provide her the kind of care that my brothers and I simply cannot. I felt guilty, initially, because I flew home on the morning of the day it all came together and my brothers took her to the facility about an hour after my flight left.  Apparently, she attempted to escape that night...surprise! The last update from the youngest brother is that she is calmer and doing pretty OK adapting. 

I wish I were closer to go visit her while she has some possibility of recognizing me. But reality is that most of the time, she didn't recognize me when I was there for the month, and she is even less likely to recognize me now.

I'm grateful that we found a good, competent, willing facility and that she was able to get a bed there. From now on, it's just a matter of running through her assets and then applying for Medicaid. She should be cared for now until she dies. If she follows my grandmother's path, she will live another year or two, and then forget how to chew or swallow. 

Do you have any idea how frightening this is to me? My grandmother first, put into care when she was 83, dying at 85. My mother now, put into care at 81. Granted, there's another 20 years ahead of me, but I am staring dementia in the face and wondering how to escape. Fearing there is no escape. Hoping I die from some complication of polio or diabetes long before my mind goes.

I can cope with my body crapping out on me. I don't want to cope with my mind crapping out on me. I saw how horribly frightened mom was when she was lucid.

I have to blog about this.

My mother's health is physically fine:  she has no major systems causing problems, blood work is dandy (despite all her alcohol consumption!), no infections, no broken bones, no physical issues to speak of.

She is between stage 5 and stage 6 of dementia, out of 7 stages. This is a physical problem with the way her brain works (or rather, is no longer working). She cannot live alone safely. She cannot reliably feed herself, toilet herself, clean herself, care for her skin, nails, hair; she cannot do her own laundry or clean her own house. She thinks it's OK to pour hot coffee into her wine glass, or to ask why the dryer is full of water when she's opened the washer (and no, that one wasn't a word problem...she also has fairly severe aphasia).

Her insurance, which is Medicare plus an advantage insurance of good quality, considers her need for care to be only "custodial", not "medical". 

Therefore, we have to find a facility that will accept her as a private pay patient, spend down her assets, and then convert her to Medicaid wherein the facility accepts her social security check plus the Medicaid reimbursement as full payment.

But here's the thing. The facilities don't like to do that. That's because if a patient is in a hospital for 3 days with a medical issue and is transferred to the facility, Medicare/insurance pays for the first 100 days. Then the patient pays if they have any assets, and then they convert to Medicaird. The facility cannot refuse them and cannot kick them out when they convert to Medicaid.

So the facilities use the private pay patients to cover the costs not covered by Medicaid. That's fine, right? We can put her in as a private pay patient until her assets run out, we don't have a problem having her pay her way as long as she can. Except. Except that facilities (at least here in Michigan) will insist the patient have 3-4 YEARS of assets before they even accept them as an admission as a private pay. Because they know that they cannot kick them out when they convert to Medicaid.

If she had a health problem other than dementia, and had been hospitalized, she would have been placed with no problem.

Because she is now healthy, and has dementia, and only has maybe 6 months worth of private pay assets, they may very well not take her.

What the heck kind of way is this to care for our elderly? 

And before anyone lights into me with "family should be doing this", I would note that my brother *has* been caring for her for the past 2 years. It became untenable for her to be left alone a few months ago, and because he does have to work, he had to leave her alone, and she got to the point where she had lost enough weight we thought she was going to die. That turned out to be a sinus infection plus (hey, did I mention dementia?) wearing my deceased dad's lower dentures. Fixed those two things, she's eating well and gaining strength.

But she's still has dementia. And I came out to help and found that none of us 3 kids have the skills, abilities, or knowledge to properly care for her. It takes someone who has been properly trained. Also who is not themselves disabled (me) or working full time (both brothers).

I will continue to blog on this. I will continue to work to find good care for my mother. But the game seems to be fixed against us here. And that sucks.

A friend of mine, struggling with unemployment, underemployment, and numerous financial woes, but who has 2 part-time jobs starting in January, opened her mailbox yesterday to find an anonymous money order, from "Secret Santa" in the amount of One Thousand Dollars. You read that right. Neither of us know anyone with that kinda dough to give away! Her money woes, at least for the coming month or two, are dealt with and she can relax and have a happy Christmas.

My brother and his wife gave us a gift card that will help free up some money for other stuff we need this month, since my hubby's hours have been cut temporarily.

Another anonymous gift, via Amazon, showed up in my email a short while ago.

Holy smokes. It's enough to make me cry. Actually, it DID make me cry. And say "HOLY SMOKES" a lot.

Seems the light is coming back after all....

Today (and yesterday) had some very very difficult parts to them. Also some good (or at least better) parts. I often feel completely at a loss as to how to deal with my mother when she is clearly "out of her head", and especially when her behavior gets so agitated and angry. I can tell she is frustrated, and that what she talks about is real to her. I try hard to address the feelings, not the facts of the matter. I know, intellectually, that it is useless to try to convince someone in dementia of the actual truth of things. Complicated by the fact that she often is speaking of real events or activities or items, but does not have access to the words I recognize for them. Leading to even more frustration and acting out on her part. It's hard for me to "let it go" and let her have her own reality, especially when it is expressed in either vitriol directed at me (constant reminders of "it's not personal, it's not personal, it's not personal" help, but still...) with yelling at me because I don't know to what she is referring because it's something that exists only in her mind, or, what is so often worse, expressed as serious self-hatred and self-vilification which just breaks my heart.

I want to argue with it all! And none of it is coming from a sane, whole mind....and all of it is coming from *some*where.

I don't feel I have the tools to respond appropriately or constructively, and it doesn't help that my brother, who lives here, has a significantly different approach. He and mom have had numerous screaming matches (not while I'm here, because I would be GONE, or calling 911). He thinks I'm "coddling" her by making chairs easier to get out of, the bed more accessible, making sure she gets into and out of the bed or chairs safely, uses the walker safely, and I don't insist she get up and do things if she says she is tired. And he has zero, zilch experience of having any disability. For heaven's sake, Mom hasn't eaten enough to sustain basic metabolism for about 2 months; her muscles are wasted away, and she's still not eating enough to sustain basic metabolism. Looks to me like the more he insists she move around, the more muscle she's going to burn, until she starts getting more nutrition and calories into her body. But I'm "coddling" her. Argh!! This is one where I believe I *do* know what the heck I'm doing...I'm the one with the experience of disability, and the knowledge of how bodies work. Argh.

Today at the doctor was disappointing, since he just ordered more tests and no one said the word "dementia" anywhere in there. She's diagnosed as "failure to thrive". She was pretty present during most of the visit, yet my brother thought the doctor saw "a pretty good picture of how she is". My experience with her is a whole lot different....probably because he's gone during the worst of the dementia in the afternoon and evening. I did give the doc 4 pages of information from my week here, hope he finds it helpful. I was hoping for some indication of how long this might go on as it is and some kind of care facility placement based on the cognitive impairments, and he is still focusing on the physical stuff. But no. Guess not today. Am I the only one who sees this? possibly, because I see her make an effort to "look good" when people stop by, but when I'm with her all day, she doesn't do that.

There was one good bit this evening, though, when mom asked for a bite of my Lean Cuisine because it smelled good, and after she had some ice cream, said that food really tasted GOOD now. This may mean the sinus thing is vanquished, or on the way to vanquished anyway, and that her appetite will return. That alone will help a lot of things.

I'm so glad for all the people, mostly online at this point, who are there for me. Thank you all. And thanks to those of you who have dealt with the difficulties of dealing with dementia in loved ones and not only lived to tell about it, but wrote about your experiences, so I have a path to follow and the knowledge that I'm not the only one.

And drat it, no matter how many times I've had to say it over the last two days, it hasn't gotten any easier. I fly back to Michigan tomorrow, at the request of my brothers AND my mother (that last was a bit startling) because my mother is likely dying and doesn't have a whole lot of time left. I will go and help care for her, and help sort things out afterward, and stay as long as I can reasonably stay. Yesterday and today are full of preparatory stuff, tomorrow I fly all day, after that....well, I will take my computer and there is online access at their house. I have my cell phone and lots of numbers to call. I've had numerous offers of assistance of various sorts (including, which rather knocked me for a loop! flying back with me if I thought I needed it...I was so so touched by the caring and love of my friends and partners).

Will be offline for a couple days, I expect, but will check back in as soon as I can. Thanks. To ALL of you.

I did it...went to Google+, signed in (hey, I apparently still have a Google account from the relationship-that-went-blooey, because we tried to use Google Calendar to coordinate stuff...and it didn't. But I still have the account.)

I have all of 2 people in my Friends Circle. I suspect a lot more of you are out there. I will be phasing out FaceBook (except for the old "relatives and high school folks"), and phasing out LJ. Slowly, I expect.

If any of you are on Google+ and haven't stuck me in a circle yet, I'm there under my real name. Look me up. I don't think there are too many of me. :-)

This whole social media thing is...still very odd to me.

Last Friday, I took a couple of filk CDs with me when a friend picked me up to give me a ride down to Mac. It's about 45 minutes each way and I figured I could tortur...er, INTRODUCE her to a couple of my favorites. (Would that it was a longer drive, because I could have brought even MORE!)

Even given that I sang along at the top of my voice with most of them, she seemed to enjoy Thirteen and My Favorite Sings. So much so that she asked to borrow them for a week, to listen some more.

A couple days later, and she tells me she has BOUGHT both of them. 

Yay!! Doing my part to increase sales for some of our favorite artists!

Next up: convince her to come to Conflikt with us. I do think she's "one of the family", even if not particularly musical herself. She fits, anyway.

And, of course, introduce her to more artists. :-)

Ganked from a friend, and posted for signal boosting:

From an email from Alan Grayson. Mr. Grayson is a former Congressman from Florida, currently running for his old seat back. I really hope he makes it. We need people who will speak this kind of truth. Since it's not nearly common enough, anyone who is so minded to pass this along will be deeply appreciated.

-------------------------------------------------------------------------------------------------------------------------------------

The Government Accountability Office (GAO) says that our Government has handed out $16 trillion to the banks.
Let me repeat that, in case you didn’t hear me the first time. The GAO says that our Government HAS HANDED OUT $16 TRILLION TO THE BANKS.
That little gem appears on Page 131 of GAO Report No. GAO-11-696. A report issued two months ago. A report that somehow seems to have eluded the attention of virtually every network, every major newspaper, and every news show.
How much is $16 trillion? That is an amount equal to more than $50,000 for every man, woman and child in America. That’s more than every penny that every American earns in a year. That’s an amount equal to almost a third of our national net worth -- the value of every home, car, personal belonging, business, bank account, stock, bond, piece of land, book, tree, chandelier, and everything else anyone owns in America. That’s an amount greater than our entire national debt, accumulated over the course of two centuries.
A $16 trillion stack of dollar bills would reach all the way to the Moon. And back. Twice.
That’s enough to pay for Saturday mail delivery. For the next 5,000 years.
All of that money went from you and me to the banks. And we got nothing. Not even a toaster.
I have been patiently waiting to see whether this disclosure would provoke some kind of reaction. Answer: nope. Everyone seems much more interested in discussing whether or not they like the cut of Perry’s jib.
Whatever a jib may be.
In the next few weeks, I’m going to be writing more about this. But right now, I wanted to keep this really simple. Just give folks something to talk about when they’re standing next to the coffee maker.
The Government gave $16 trillion to the banks. And nobody else is talking about it.
Think about it. Think about what that means.
Courage,
Alan Grayson

I know, not exactly news from me. But dinner last night turned out really really good and I want to record it for posterity, or at least so I can make it again.

It started as a plan for a succotash-type-thing for dinner (lima beans, corn, onion, maybe other stuff, depending). But the produce stand had really nice sweet corn, so that shifted to "something involving beans, plus cold corn on the cob".

I had a can of limas. I grabbed a can of garbanzos. I took a walla walla sweet onion, medium. I looked in the produce drawer and lo! there was green pepper, zucchini, and tomato.

I drained the beans and put them in the bowl. I chopped up the onion, the zucchini, a couple tomatos and half a green pepper and put them in the bowl. I dumped some balsamic vinaigrette over it all, tossed it together, covered the bowl and stuck it in the fridge until dinner.

Yum!! it tasted like summer! Along with the cold corn on the cob (one of our favorite treats) and some TJ's 72" dark belgian chocolate, it made for a complete and very satifsying meal.

I wonder if lightly steamed green beans would go? Or yellow squash? or, huh, something pickled? Who knows...it's always an adventure.

Now, if it would just stop being too d*mned hot, I'd be even happier. But then, hot weather means iced coffee in the morning so maybe I'll let it be hot a while.