Caregivers engage struggle
struggling to do what others can’t now easily do for themselves
so that others can struggle with what they must to do for themselves.

Caregivers enter struggle to enter the world of another
to help change what must be changed
to respect what is essential
to validate and empower
rather than
to make others like us.

Caregivers respect struggle
and struggle to give of themselves
so that others can live with some dignity
so that others can feel respect and love
while they face another day.

Caregivers live in struggle
between the needs of the self and the needs of others
putting aside their own moments
to empower and aid the moments of others.

Caregivers honor struggle
the struggle of every human
to live a simple life
to live a conscious life
to live a fulfilled life
to live the best life
with a little help from others.

Caregiving is struggle
to empower the struggle
that gives meaning to lives.

By honoring struggle
caregivers honor lives.

Maybe some people can see caregiving as a graceful and above the fray thing, but not me.

I see it like parenting.

Sure, it combines the spiritual, mental, emotional and physical, but mostly it’s just a struggle to get things done and keep things on track punctuated by moments of supreme poignancy.

It’s piss towels and dinner and fights, but every now and then there are touches that take your breath way.  Sure, some of those are like blows to the solar plexus that knock you breathless, but others are moments of pure connection that leave you with a transcendent splendour that will stay with you.

I don’t know any way to separate parenting from the menial, or to separate caregiving from the menial.  It has to be there, to be respected and be done.

For me, it’s about weaving the cerebral, emotional and spiritual into the physical routine.  How can I better serve, better listen and reflect, better clarify and motivate, better empower and ennoble, better encourage change and transition in the context of the daily needs?

That’s where the challenge is for me, being above it and connected to the bigger even as I am in it and cleaning the shit.

If I don’t see the mundane as spiritual, it is impossible to value the work that needs to be done.

If I don’t value the details of life, it is impossible to make those details stand out as the gifts that they are.

If I don’t understand that little is big, that the largest possibilities of the human spirit exist in the smallest choices we make, then it is impossible to value those whose bigger days lie in the past.

If I don’t respect that fighting is life, that conflict & struggle is the way we express our humanity and shape our world, then I won’t be able to engage the efforts others put out to claim their own life.

If I don’t commit to opening to others, graciously receiving what they have to offer, then I will miss their opening and their sharing of what is most valuable to them.

If I don’t make the effort to enter the worlds of others, seeing through their eyes, then I won’t gain the gifts they offer me, gifts of seeing our shared world in a new way that may enlighten, may challenge, or may bless.

If I don’t accept the legacy they hand me, then I devalue their life and miss an opportunity to be connected to something bigger than my limits.

In the end, it’s about holding hands, holding stories and holding dreams in a shared way, shared over meals, over laughter, and over messy intimacies.

But that deeper dimension is so often missed.

Others want their relationships with the ageing and infirm to be sweet and nice, and never out of control.  They want their world to remain unchanged by the challenges of caregiving, the challenges of facing messy and difficult humanity up close.  We are born between piss and shit and die the same way, so our humanity needs to be affirmed, not just smoothed over with sweet platitudes that don’t honor the real blood, sweat and tears of what it takes to be in relationship with another person, especially with another person who is facing challenges of their own.

Or at least that’s my experience.

And then, in the evening, it was running drills.

My sister has a gallery opening today near Northampton MA, a good two hour ride, and more with bathroom breaks.  My mother had asked some old friends who live in New Hampshire if they wanted to get together.

By the time we got back from dinner, my mother had decided not to go.  All well and good until the voicemail that said the old friends were coming.

They called while my mother was on the phone with a friend in Toronto, speaking with my father.  (Yes, we have two phone lines.)  My father wanted my mother to help, but she wouldn’t budge, so he set up a meet at a place they know.

After her call, she was informed of the decision made without her, and she disapproved.  But she couldn’t come up with any alternative.

What did that mean?  It meant that worn out, getting sick me had to start running drills.

“Do you remember the name of her favourite restaurant in Northampton?”  I asked my father.

“No, I don’t.”

“Yeah,” I said, resigned.  “The problem is that she doesn’t remember either.”

I looked up malls and addresses and possible meeting places, and options and possibilities, most getting rejected.   Would this be better or that?   How about the other?

Even after my father called the friends and shared the new plan (still not the plan that my mother wanted where they showed up late at the show in a little school gallery), I still got bombarded with questions, having to puzzle out routes on Google maps, then pull paper maps to try and show my father.

It was nasty, running these drills, because, as you can imagine, I was the one doing all the running.

Finally the night was over, and morning came.

My father watched CNN, saw some wet weather in NH, and called suggest the friends stay home.

Of course, my mother was up for that; that was her damn plan all along, no matter how many drills they made me run.

Today she wanted to go upstairs with the now 3 1/2 week old stairlifts.  No. (She still hasn’t slept upstairs.)

Today she wanted to settle the details of the potential Florida trip.  No.

Instead, I got to pull Christmas decor she could pick through from her recliner and tell people where to out it.

Running Drills.

My mother doesn’t like to make decisions.  Last weekend, I got some good hotel rates for next weekend’s trip to niece graduation from Kayak.com, but she fancied connecting rooms.  I told her that I couldn’t book that online, that she would have to call, and gave her a list of the hotel numbers.

Yesterday afteroon, a week later, she finally told my father to call.  The options weren’t good, so I was sent back to the internet.   Problem is that some of those 14 day advance rates are gone.

“I told people to book the hotel!” she moaned.  “Why do people always fail me?”

I snapped.  “I got rates, you wanted adjoing rooms, so I gave you the numbers.  Why didn’t you call?”

“I admit it,” she said.  “I don’t like making choices.”

“Well, this time not making a choice cost you money,” I replied, knowing that my father had reminded her of the problem earlier in the week.”

I know she doesn’t like making choices.  When I ask if she wants tea for her cough, the only answer I might get is a mumbled demurral.  No answer means yes.   Enmeshed.

And me?

I know old people like to talk more than do, but I am sick of running drills for games that will never be played because people can’t really make choices and stick to them.

It was supposed to be a freer day with nothing on the schedule, but I ended up having to pee her at 4:30 AM, and then wait from 8 AM until at least 2 PM (that’s not happened yet) for her to be ready to use the new stairlift and develop procedures for moving, showering and such upstairs.

I need to prep dinner at 4 PM, so that shot all day for me.

He thinks I should have negotiated with my mother so I could have gone out and come back at 2 PM.

When I tell him that my experience is that my mother can not or will not negotiate such things, but rather just just resists the pressure to be on a schedule, he says “Yeah, Yeah” and waves his hand dismissively to me.

“Have you been able to get her on a schedule?” I asked.  “Do you know any tricks to make her agree?”

He is just stuck between me being frustrated on one side and her being her on the other side, and doesn’t want to be in the middle.  He knows I am right, but I should fix it or not show my frustration.

And on that issue of my silence, he wants no negotiation.

Often it is being upset because she hasn’t been a good mother.

That’s challenging for me.  I do want her to focus on what she has done well, what she can do now, but on the other hand, I don’t want to comfort her by just stroking her.  I want to remain in my truth.

Truth, to me anyway, is that she wasn’t a very good mother.  Too passive-agressive and too narccissitic for that.  I have been taking care of her since I was very young, and she never reached into my world and affirmed my possibilities beyond her own fears.

She never had the social skills to make friends and build networks.  The lack of those skills is still something that my siblings and I still are impaired by.

I want to affirm her, but I want to be honest.  And for a woman who has already lived 90% of her life, it’s not easy to say that she still can make new and better choices.

It’s hard.

“I have learned to ignore it,” she continued.  “People always say odd things to old ladies.”

Yeah.

But the two gals said nice or sweet as I wheeled her out of the women’s room at the odd lot store.

It was my sense that they weren’t talking about the old lady who just peed, but rather about the poor shlub who just took her to the bathroom.   It was the wheelchair pusher who was “so nice.”

But that’s not how my mother saw it.

It was all about her.

And not at all about me.

My sister was in a car accident on Saturday, and yesterday they declared her car — my parents old car — a total loss.

She called to talk about this while I had to get my mother up to PT, always a chore.

So today, I had to get my mother up and e-mail her some comparables for her car.

Since I did that, I pulled the urine towels on my mother’s chair and didn’t replace them.

We came back after shopping her, and I had to unload the car and make dinner after getting her in.

I saw the chair didn’t have a pee towel and said I’ll take care of it, pulling her back.

But she had already started moving and rolled off the chair.

Now, my mother fallen to the floor, even if the fall is low and doesn’t hurt anything is a big deal.

They had to call me to get her back up on Sunday morning.

I like to lift her onto a small stool.  That starts the process.

She can’t control that, so she likes to go to the stairs.

So the rug she was on was not set for pulling, it was set for lifting, but I had to pull her anyway, all the way to the stairs.

A bad staple cut her new pants, and she fell back the first time, twisting her foot.  She wasn’t tired enough to put her weight onto the rolling chair, so she kept it at arms length, keeping it unstable.

In the end, we used the stool technique, just after a bunch of messes. and with more wear and tear than doing it right where she fell.

I blamed myself; I was tired and hurried and sloppy with the reset of the chair.

My mother blamed herself; she is old and infirm and useless.

My father blamed himself; she saw the chair was unset and should have done it.

I kept cool and managed it well.

But boy, it’s hard in so many ways.

It’s not that the two shirts and jeans are really dirty.  I have to do a wash almost everyday to clean the urine soaked clothing of my parents, especially my mother who soaks through her pads to wet the towels on her recliner.  I spray for cooking stains and alternate blue polo shirts, both about twelve years old; one has the crest of the Atlanta Olympics in 1996 embroidered on the chest.

I am, in so many ways, invisible.   I am worn out, like the clothes on the rack at Goodwill, just hanging there one step away from a rag bin, shredded for disposal.  Wind blows through me.

I am invisible through sheer will.   Not my own will, though that is estimable, but through the will of others who just don’t have the time, the energy, the fortitude, the openness to deal.

This is a tough time for the country, for the world.  People whose job it is to take care of other people’s money, to believe in getting rich slow, risked other people’s money for a quick hit of getting rick, and now the costs spread out over the whole world.  I’m not doing anything to change the world, I am just being invisible to make two challenged old people’s life more comfortable.

That’s why I often, often, often, end up hitting myself in the head.  In fact, more often than that I have to stop myself from thumping the melon in deep frustration and anger.  But the nice thing about my suicidal ideation is how fun it is; I sing cute little made-up songs about dying, or figure out how much I would pay to have someone kill me, the price varying according to the amount of pain I am in.  I can’t even think anymore, let alone write, and it gets worse.

I show that, of course, in things like wearing the same clothes day after day after day after day, but those signs are invisible to those around me, just like so much of me is.   What I really want, of course, is to become visible, to be seen and valued in the world, but that doesn’t seem ever possible; the best I can hope is to play some prettier part, because my complexity, nuance and ambiguity will always be too queer, or at least that is what I believe.  “Too hip for the room” is my lifemyth.

I am worn and weathered, torn and tattered.

And well, I wait until after midnight thirty to take her to the tolet.

Bang my head and make it stop.

Too bad I still have strength to bang again.

But you also have to make them feel cared for.   It’s not just the actions, it’s the kind word or the joke that make things different.  I often get crazy when I just want to roll my mother to the can but she wants to talk, and I know that being listened to is important to her, even if it’s just another repeat to me.

I spoke to my sister yesterday and she told me that the little $10 cigarette-lighter FM MP3 player from Deal Extreme that I gave her this weekend had failed.  I promised her the second one from the shipment of two.

Later, I got into my car and found that my player (and the 4Gb card in it) had been swiped by some little hoodlum in the neighborhood.   I liked having a moment hearing my own choice of jazz chantuse, but that was taken, two days after my primary MP3 player went flaky (and I am still chasing SanDisk for an RMA)

But I had promised the second player to my sister, so I gave it to her.

She offered to push it back to me, and that was nice.

But what she didn’t do was ask for the URL so she could order a few.  Heck, she didn’t even offer to sew up the big rip on the leg of my jeans, and she is trained as a fabric artist.

My family, well, this whole idea of making someone feel taken care of, well, not so much.  You see, it demands that you see, understand, identify and acknowlege someone’s needs or desires and then get ahead of them.  I gave my sister a few gifts and services last week. from some $1 reusuable bags to programming her new converter & installing the voice recorder software, to the MP3 player, but for my birthday all I got was an e-mail message.

I suspect there are at least two factors at play here.   One is a lack of habit of empathy, but the second is a fear that my needs are so denied in the family, me being the target patient, that entering them is a mess.  My sister says “I’d like you to see a dentist,” but when I explain how hard that process is, she just fades.  I keep finding solutions for my family members, but it feels to me that they keep shrinking back.

I understand that they may not be able to take care of all my needs.

But to not feel taken care of, well, that’s always tough.

That’s why I work to make them feel taken care of.

It’s important, I think, that the ones you love actually feel loved, and don’t just have to know it somewhere on the surface.

She said she was off today and she would touch base.

She didn’t.

I know that I’m not easy, but then again, neither is what I do here, or who I have to be to do it.

And my main MP3 player, the Sansa C250 with Rockbox and a 4Gb expansion is busted; one channel of the headphone jack has gone flaky.  Bought it refurbished.  Probably screwed.