Random thoughts

 So this disorder that I have is progressing. That's the nature of the beast, and I'm trying mightily to stay as aware as I can of the changes, both physical and cognitive. I have lots of thoughts and feelings about all of this, relating to both small day to day changes and challenges, and to the Big Picture.

Let's tackle the small stuff first. It has become more and more difficult to complete even daily tasks, such as ADL's, even bare minimum housekeeping, getting ready to go out, working art projects, taking photos, remembering to schedule rides, tracking time, organizing the clutter in my room. Sensitivity to light and noise is becoming worse. Patience is a real problem. I feel anxious most of the time, and impulsivity causes problems for myself and others. Reading gets harder and harder. Only a few games on my iPad and videos without commercials help to distract me from perseverative thinking. This is true even when I am with people, at times. My ability to filter incoming stuff is declining rather quickly now. Even small decisions seem way too hard: should I have another cup of coffee? What should I wear? Where should I put things? What music should I listen to? And the big decisions are impossible. I need someone to help me now with almost every decision I make, and when I'm too embarrassed to ask for help, they just don't get made. I wait and wait. And then apologize for making them too late.

And as for the big picture. I am almost constantly aware that the time is approaching when I will need to decide how much longer I want to live. I do not want to progress to the point where I am totally dependent on others. Is that wrong? I don't think so. Maybe the better question is whether or not it is wrong for me, and I can answer that question with a hearty "NO". 

Firstly, I will not burden anyone with my physical care; because of my size, it could even cause injury to other people, especially when I become even more unable to control my behavior. I have seen first hand how difficult it is to care for someone with advanced dementia, esp when complicated medical/physical challenges are present. The decisions that have to be made then are a real burden on whoever is responsible for the care. And the people making them may not have the skill, the ability, the resources, or even the desire to respond to the needs that come along with multiple diagnoses and needs. The older the person gets, the more complicated it will become. 

And then there are the financial considerations. Because I can no longer work, I live on SS Disability Insurance. I also have Medicaid for medical needs. Believe it or not, not everyone who receives Medicaid is oblivious that SOMEONE has to pay for this care. (I am acutely aware of this, to the point where I have attempted to discontinue an expensive medication, only to find that progression became more rapid without it.) Why then should I be forced to progress to the point where total care is required, along with repeated hospitalizations as I age? And then there's  the grim reality that the care for Medicaid is substandard. As dementia increases I will have no power to object if I don't want a particular treatment or procedure, or to fight for better care if I want it.

Because I am in a care home, all of my disability except for 150.00 per month goes to the home. Out of that amount I pay for supplies for my pets when I can, personal items such as shampoo and bath soap, and supplies to make coffee in my room. It doesn't leave much for items such as gifts, clothing, outings with friends or family, etc. So many times, I don't go, or I try to accept graciously when they offer to pay. But I can only do that so many times before I start to feel ashamed.

And now on to the philosophical side of the situation. I know that some people will be adamantly opposed to my opting for an early death. I wish I could somehow help these folks to understand that I take the obligation to be responsible for my life and death very seriously! And, respectfully, I believe it is my right to make these important decisions. It really amazes me how so many folks think they have the right to judge people who want the power to decide how their final days will go. Religion is part of it, sometimes. But I truly resent the fact that even here in Oregon, as long as my body isn't plagued with an illness that would leave me six months or less to live, it is illegal for my physician to provide me with the medication to bring about my death when I feel that I can no longer stand the losses of this devastating disorder. There is now compassion for those in physical suffering, but not for folks like me. And it amazes me that people who have not experienced this process can use their votes to make this decision for me and my physician. And many times it is these same people who complain about "entitlements". Never mind that I paid taxes all my life to pay into a system that will care for the people who can no longer care for themselves, and was happy to do so. That was exactly what I wanted my tax dollars to do. Now, do some people take advantage of the system? Yes. Do I? No. So people, please think carefully before judging me. Or better yet? Don't judge me at all.

Well. Enough for today.

Thanksgiving

I am so very grateful this year for the new home I have been given; for the family and friends who surround me; and for the beauty that sustains and enriches me.  Thank you, thank you, thank you.

To be grateful is to recognize the love of God in everything.

~ Thomas Merton 

iGoogle

iGoogle:

'via Blog this'

JP

The Online Magazine For Evolving Minds

Topics: Death & Bereavement, Feature, Vignettes

Morning Song

By Michael Lebowitz | Thursday, October 20, 2011 at 12:16 am |3 Comments

Michael Lebowitz remembers a friend with dignity, respect, honour and honesty.

She is not young anymore. One gets the impression that even when she was young she was not youthful, given to enthusiasm and giggling. The office politics of her place of work were more and more like her dining room table in her childhood home. There was yelling but far worse was the subterfuge, the jockeying for position, grant money and office windows, trips to Germany and other such – this was bloodsport and damn near killed her. 

She took up a lover. He showed up nightly in a liter sized, soon to be gallon sized bottle of cheap red. He stayed nearly all night. The days passed into night, the years slid by, a parade of tears and silence, ending in the grey uncertainty of the next dawn.

That morning she talked about how sometimes the thought of taking herself out came back to her. How odd, how final the phrase sounded coming from this quiet mouse of woman.  She wasn’t built that way of course, she said. But she thought she understood it. There were scarves to knit and cakes to bake, everyone has something don’t they? Still, there is longing and fear, a bravado that belongs mostly to those who have fallen off the map. Her hands fly with surgical skill, the tapestries of her day emerge. She speaks slowly today, with what might even be amusement, at the thought of other people doing themselves in. As if. She asks one of the local musicians in the room if he has ever recorded an album he often jokes about, Songs to Hang Myself By. I’m working on it, he says, his voice getting lost in the uncomfortable laughter that starts and trails away. Almost as if it is only a matter of time, he seems to be saying.

This exchange came back to me earlier today when it became clear that it had been only a matter of time. 

RIP JP Scofield

`````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````This is an article about my friends Martha and JP.  Both of them have experienced the despair of depression; and two days ago JP lost the battle and committed suicide.  My heart is so sad; but I understand how it is to be weary of that battle, and not be able to express those feelings to people around me.  I've been there, more than once.

From an outside perspective, it's so easy to say, "but he/she had so much to live for".  We all have so much to live for; but not all of us have the ability to see and feel that all of the time.  There are times when in spite of all our efforts, all we can feel is despair.  Personally I think it's a brain abnormality, an illness.  Or at the very least, a symptom of an abnormal process caused by an illness.

I'd like to believe that if I had known JP was in danger, I could have done something to help; or at least let him know that I love him, and I understand; and therefore been able to ward off this horrible end.  But I know better.  When I made my attempt at suicide, I knew that people loved me; knew it absolutely.  But that almost made it worse, because I had nothing to give back.  I couldn't reach out and connect with those loved ones.  I just kept drifting further and further away.  The only thing that kept me alive was botching my attempt to end it;  I woke up vomiting, and the next morning my friends took me to the hospital, and slowly I regained the ability to love my life again.  But my pride almost killed me.

This morning I had a conversation with my friend Lynne about mental illness and the difficulty our culture has in taking care of those of us with these troubles.  So much of the problem has to do with stigma.  We all want to be "normal".  Man, I hate that word.  When I left the hospital I swore to myself and to God that I would not pretend any more; but lately I find myself pretending again:  "How are you?"  " I'm doing really well."    No, I'm not.  I wish I was but I'm not.  Maybe it's time to let people know that.  Because I really am not alone, and there is so much to love in this life.

Falling Leaves

"I watch October maples bare their branches,

and I would have them hold their leaves,

as I have held my tears,

thinking by 

sheer force of will

to stop

the coming winter."

I wrote that 24 years ago, just before leaving my husband.  I was at the beginning of a journey toward

authenticity; I had decided to stop trying to live the life that was expected of me, and to find out if I could 

have a life that would feel true.  I was so afraid.  There was so much inside that I had not yet faced.

And now, 24 years later, I have learned that the fear comes from hiding authenticity; that being true to myself does mean loss at times; that Life has things to throw at me that can drive me to a place of  despair if I cannot learn to accept that I truly need very, very little to be happy.

Over the years I have read books and watched movies and documentaries about WWII and about the Vietnam war, trying to understand the secret of war:  war between countries, between groups, between religions, between strangers, between loved ones, between friends; war within myself.  

Now I try to learn about peace.  I read and read and read; and the more I learn the more I realize that it all comes down to how I spend my time.  I can't force others to behave the way I would like them to.  And I don't have that right, anyway... we all get to make our own choices; and we are all learning how to grow as spiritual beings in this world.  I'm beginning to think that the key, for me, is to find gratitude for the good that I have.  To literally live in gratitude.

When I ate my soup at lunch today, I started to have the old feeling of, "what if this isn't enough?  what if I'm still hungry?"  But then I remembered reading about a man in a pow camp who was desperate to have a cup of swill that I would never eat (never say never); and I was ashamed.  As Americans, we are all so very spoiled.  We want more, and more, and more.  I wonder if I can learn, when those fears come up, to say this prayer:  "Thank you.  Help me be grateful."

I'm not afraid of winter any more.  It is a time of rest, of dormancy, of reflection.

Thank you.  Help me be grateful. 

2007 10 10-1

It's Springing!

New Home

           "Before I came here, I had a career, I had friends, I had clothing that fit... I was ok."

                                                 "God has brought you here.  Take the hint."
                                                  (Movie quote, can't remember which one.)

Today I received some words of encouragement from a good friend (thanks, Lisa) who reminded me about writing in this blog.  So I thought, "that's a great idea, it's been a while, I think."  I was shocked to find just how long it's been.

I've been thinking about perspective, and focus.  When I focus on what has changed, it feels overwhelming sometimes:  having to quit school, giving up work, moving to an adult care home, physical changes, mental challenges, social interactions. It's huge, and for a while i felt so lost.  Hospitalized June of last year, and then the shock of being diagnosed with SCA in August.  The course of applying for disability, and arranging for a living situation.  Facing the reality of having a condition that is progressive and debilitating.  It was a great relief, though, at the same time.  Finally, an explanation for all of the struggles of the past few years.  The extreme fatigue, the muscle weakness, balance, coordination, and, especially, the cognitive changes.  It has a name, and the name is not failure.

And now, after a few months, I am learning to see it all differently.  Nothing important has changed:  I still have my life; it's just slower.  The part of my life where I hurried from one place, one person, one task, to the next is over.  Today I drink my morning coffee in my chair by the window where I can watch the birds at the feeder, and I take time to notice them.  I watch the progress of spring:  buds on the trees growing larger and rounder, ready to pop any day.  The squirrel, hanging from the eaves, grabbing the feeder but unable to reach the food.  (Now he sits on the fence and ponders new strategy, and I cheer him on!)  Soon it will be warm enough to have coffee on the deck.

So.  God has brought me here.  I get it.

More

Funny how much easier it is to write when the alternative is homework...

Today I went to a work "party" to help make tarps out of plastic grocery bags for homeless people.  Boy, did it feel good to DO something!  These particular "quilts" will go to Haiti.  But I have a feeling that this thing is going to catch on, and thousands of people will be making them!  What an amazing idea from an amazing young woman.  I spoke to her briefly.  She is a senior at the U of O, and developed the idea as a project for school: construct a shelter out of "found" items.  She decided to use grocery bags since they were so abundant and would otherwise be part of the landfill, at least in many cases.  Recycling with a purpose...

Anyway.  It was great to be there with all those other women, making something useful.  Doing something good. I have missed that, doing good.  AA talks about how imperative it is to do service, to contribute.  Not just to stay sober, but to feel spiritually sound.  Lynne joked about how it felt like a church basement... and I have to admit that I miss that part of belonging to a church.

Jacque talks about writing a new story.  I can see that my new story has to have some type of community service in it.  I need it.

Spring!

So I had a great conversation with my friend Jacque today... about why it's so damn hard for me to visualize being able to finish this school course and actually find a job again.

I was hospitalized for depression in Nov. '08, after a suicide attempt.  It was not a cry for help, because I truly did not believe that there was any help to be had.  When you're in that place, there just is no viable solution.  And I was so exhausted, in all the ways you can be exhausted: physically, mentally, emotionally.  I only lasted as long as I did because I knew what a selfish thing suicide is.  But it becomes a viable option when you believe you have nothing left to give, and that's what I believed.  Sometimes I still feel that way, and that feeling is all tied up in work.

I've always worked.  I like working.  I like having a job where I feel I can contribute something meaningful to my world.  Working with kids was always my dream, and working with kids with psychiatric troubles was the exact right fit for me.  Until it wasn't; and then I grieved that loss like it was a limb.  Our program went to hell, and I had to get out.  Insurance wouldn't pay for the kids to stay long enough; a corporation took over our program and sucked the life right out of it.  Medical model at its finest... drug 'em and send 'em home.  It broke my heart.

I was able to find a position at a residential center for boys in Eugene, and I came to love that program, too, although it wasn't mental health.  But slowly, it got more and more difficult to get out of the house and get to work.  And then one day I just could not make myself get out of bed one more time.  And I thought to myself, well if I can't work, then it's over.  So I wrote a note, took every pill I could find, and went to bed.  And work up several hours later vomiting, which saved my life.

They call it a Major Depressive Episode.  I've read stuff - a lot of stuff - about depression.  It runs rampant in my family; some of my siblings also had some major mental illnesses that involved psychosis, but I have been "lucky" in that regard.  I started taking antidepression medication in 1998, and that has kept me fairly functional.  Until it didn't.  But even with all we know about depression these days, it's still not an exact science... and there's still a real stigma attached to mental illness.  So those of us who need the meds have a real love/hate relationship with them.  I take them every day, now.  But I hate it.  Even though they really help me.  It feels like cheating.  And all the Prozac jokes don't help, let me tell you.  I used to suffer shame in silence when people would make the jokes.  These days I speak up.  Nothing like ten days in the "bin" to cure you of your illusions.  And I decided when I was there that I would not pretend any more.  I am what I am.  Me and Popeye.

Anyway.  Back to the subject of work.  That episode, or breakdown, or whatever you want to call it, has badly shaken not just my confidence, but my perception of who I am, right down  to the foundation.  I can no longer state unequivicably, " Hey, I can do that!"  I don't know what I can do, now.  And so I don't know who I am now.  I'm living on unemployment, and thank God for it.  I'm taking the medical coding course like I'm going to use it, because I have to believe that I can, or what do I do?  But can I?  Am I someone who can work 40 hours a week now?  Sometimes I still have trouble just leaving the house, or taking a bath, or doing the dishes.  It has been a long, slow climb, and it feels like I'm only half way up the hill.  What if I can't get any further?  It's pretty scary.

I'm 57 years old.  I'd dearly love to retire, but I have no means of income.  Planning has never been my strong suit, and I worked at jobs that paid almost nothing, because our culture doesn't pay well for treating the mentally ill, unless you're a Doctor or a Nurse, and I'm neither.  I never cared; I don't need much to live on.  But truthfully, I did not expect to live this long.

Well. More later, its time for homework.
Thanks for listening.