Running Drills

Yesterday was a mess.  Car shopping in the morning, dinner with my brother’s family at Old Country Buffet.

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.

Negotiation

My father knows how frustrated I have been being locked down and waiting for my mother today.

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.

D’affirm

My mother has this thing where she gets upset because she hasn’t made much difference, hasn’t had many successes in her life.

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.

Nice

“Two girls said I was nice,” my mother told her friend on the phone.

“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.

Connects

It all, well, it all links

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.

Worn

I’m not sure that my parents or my sister have noticed that I have been wearing the same clothes since my father’s hospital event in August, the “bad bad day” that marked the cancelation of their trip.  Even the rip up the back of the left leg of my $3 worn out Wal-Mart cargo jeans is the same, the extension of the tear between the seam and leg.

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.

Feel It

As a caregiver, you have to care for people, taking care of their needs and maybe their wants.

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.

Sunday

My sister was here last night, and I put in the little FM MP3 Player that I got for her, with a card I loaded up with songs.

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.

Saturday Night

It’s Saturday night.

My father is in the basement, site of his office that contains my bed, watching political coverage.

My mother is in the living room.  She was sleeping and I was watching the Lifetime movie on Coco Chanel, but she woke and without speaking to me changed the channel.

I could go to her room upstairs, the second bedroom, and watch if I cared, in relative discomfort.

What I really want to do is to have a rum & coke and chill out.

But I have to be up at midnight to roll my mother to the toilet.   Last night I pushed until after 11:30 PM and she decided she wasn’t going to go.  She couldn’t decide that at 10 PM, though.

I walked around the block and heard a child wail “But you can’t talk to me that way!”   That kid is going to lose.

My father is nattering about politics as I try to write, and I just walk and slam my head in the darkness, making the walls real and visible, the walls that stress and bang and bruise me.   I am the torsion spring, twisted beyond reason to take up the ignorance of those around me.

I want a drink and a chill, to even have the space to think about changing and going to church tomorrow.

But it’s just more work, more work, more work.

Outsider

My sister says that my brother feels like an “outsider” and wants to have a meeting tomorrow or the next night to discuss my parents.

I know he is newly laid off, but I also know how those meetings go; people make decisions about the way things should be and then staff out the implementation.

And I’m staff.

I don’t want to be told what needs to change by people who are consumed by their own lives, my sister and her work, my brother and his new adopted brood.

I keep everyone in the loop.  I always send status reports, babysit his kids when he comes to see parents, even do things like update a laptop for him.  I do.

He wants to be an insider then he had to come inside himself.  Come do something, like work with my father to build the wheelchair ramp.  I built it last time, but with my carpentry skills it was functional but crude & jerry rigged.  My father wants something more elegant, so he will design it.

Fine, but it’s been weeks now.  And I still have to pull my 275 lb mother up stairs.  A ramp would help me and help her.

But he wants to talk, have a meeting rather than just pitch in.  Spending the time and effort is so much harder than just telling people what to do.

I know who the outsider is, the one who has to bend to accomodate all the members of the family, their limits and their priorities.

Believe me, I know.

Staff always knows.