Monthly Archives: August 2013

I Don’t Understand, and I Won’t Remember, So I’m Not Listening.

My Bed

My Bed

In my day-to-day life, I deal with a Girl who listens and remembers, but doesn’t understand; a mother who listens and understands, but doesn’t remember; and a dog that remembers and understands, but doesn’t listen.

I swear, when I’m old and gray I’m hanging a sign around my neck that says, “Unless you’re incredibly interesting or telling me how much you loved my book, I don’t understand, and I won’t remember, so I’m not listening.”

I know, right? It’s a proven formula.

In the meantime, I have other issues to deal with. If you’ve followed me on Facebook lately, you’ll know that the most interesting conversation I can offer revolves around how much sleep I’ve had—or rather, how much I haven’t had.

The Girl goes through periods where her entire internal engine seems to seize up. I’m not going into details here, suffice to say that at times her care management becomes incredibly challenging. Take Friday night. She had dreadful diarrhea. I had care support in overnight, but even so, I didn’t get to bed until 11 pm. That was okay. I got some sleep.

Saturday turned into the nightmare of Friday past. The Girl had stomach pains, ear ache, sore feet.

At 10 pm I got up and gave her Paracetamol with Codeine and went back to bed.

At midnight I got up because she was moaning. She seemed fine, so I tucked her down.

At 2 pm, she woke me up singing—yes, singing. I yelled at her to “Shut up the singing and go to sleep. Mummy’s turning into a grizzly bear and once that happens, it’s all downhill from there.” She quit the singing and chatted to Lilly Lion and Dead Cat for another hour.

At 4:30 am, we were both still awake, only the Codeine was wearing off and she began to wail. I got up, gave her Paracetamol liquid, took her to the toilet, and went back to bed.

At 5 am I got up because it was pointless trying to sleep.

At 6:30 am she fell asleep and stayed that way until 9 am when I woke her.

I had a repeat performance on Sunday, and, to a lesser extent, again on Monday. In desperation I called the Hospice community nurses and asked for help. Two nurses came straight out. They assured me I was not being “a big sookie-bubba who was asking for way more than she deserved” (Not the way I posed it, but the way I felt). They told me I was doing fantastically well, and that it’s dreadfully hard with someone you can communicate with, let alone someone you can’t.

The next day I spoke to my mother. She told me to go and have my hair done and get a little pampering and that she’d pay for it. (I did not let her forget it)

I have people tell me they could not lead my life. They tell me they could not do what I do. But here’s the thing…

I’m so utterly, utterly grateful.

I’m on a miniscule income and I make sure I cope on it. But you know what? I am so frikkin’ grateful for that income, I can’t even tell you. There are countries around the world where people in my position simply have to do the best they can. I’m sure they, or their loved ones (maybe both) live tough lives then die early.

I’m grateful for the community nurses at the Hospice who keep a constant check on how we’re tracking. I’m grateful that they know what I’m going through and have access to the resources to help me. I’m grateful for Sasha, my wonderful counsellor, who tells me I’m doing great, and then sits for 55 out of our 60 minutes to listen to me drivel on about how my book is going.

I’m grateful for my sister who calls me and tells me how much she loves me, and gives me more support and love than I ever knew a sister could—and that’s saying something.

I’m grateful for all my friends wherever they are. I’ve developed friendships all over the world through my blog and my writing. I have the most spectacular bunch of people spread across America, Britain, Australia, and a million other places who cheer me on and send their wishes, their love and their support. I cannot say how much this means. (I even had someone in Mongolia who dropped by my blog. I’m still wondering what they made of it)

And yes, I’m grateful for a mother who may not remember, but who reaches out when I need it.

I’m grateful for a Girl who’s given me more joy than anyone could know.

The dog—I’m not so sure about …

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Happy Birthday, Baby

My GirlDuring the past two months while I was slacking off my blogging duties so I could promote my book, The Candidate’s Daughter, wrestle the yard into submission, make a thousand pots of marmalade, and attempt to clean the house, life went on. Events came and went, we got older one day at a time, and, yes, the Girl had her birthday.

Now, if you’ve read posts like, “A Wonderfully Warm Welcome to Pauline the Elephant,” or “It’s All About the Presents,” you’ll be aware that there are two events in the Girl’s calendar of equal importance. Her birthday is one of them and she’s acutely aware of how close it is.

This never fails to astound me. My Girl has limited communication. She has little comprehension of days of the week. Time has virtually no meaning to her. She cannot read. Numerical values have no place in her world. Her version of Cookie Monster’s signature song begins, “P is for Cookie…” I have no idea what her IQ is. If a person’s IQ were based solely on the ability to identify the proximity, time-wise, of one’s birthday or Christmas, she’d be quids in for a Mensa rating.

Take the week of her birthday. This year, it fell on a Sunday. We invited the Girl’s brother, the Chukker Boy, and the Girl’s uncle, appropriately named Uncle Plunkle, along with his lady, Joey-nana and her daughter. As per every birthday since the Girl was sixteen, we celebrated it at Valentines Family Restaurant.

The good news for me was that because we numbered four or more, and because we were dining on her actual birthday, the Girl was eligible to eat for free. In sixteen years of celebrating the Girl’s birthday at Valentines, it’s the first time we’ve scored a free meal because there were always only three of us. That’s right, Valentines got us back for all those years I got the Girl in as a seven-year-old.

Preparations for the day began weeks in advance. Determined I wasn’t going to be brow-beaten over presents and Valentines for weeks in advance, I avoided any mention of it. Regardless, the Tuesday preceding her birthday we drove past Valentines and I noted the way she peered out the window gazing wistfully at the front entrance, then swivelled to watch it disappear behind us. Nothing was said.

On the Wednesday as we passed, she uttered the word, “Birthday,” and fidgeted pensively.

By Thursday she showed signs of growing agitation—she craned to view the restaurant as we passed, and made small throat noises. That should have clued me in to what Friday would bring.

Howling—that’s what Friday brought. Head back, gob wide howling. I can only assume her internal Birthday clock was running hot. We zoomed past Valentines with her pointing back and yowling, “Valentiiiiiiiiinnnnnnes,” at the top of her lungs, and me yelling, “Not today! It’s on Sundaaaay!”

Ditto with the return trip.

Saturday was no better. All we heard about was Valentines. The day lasted around a month and a half. By the time Sunday rolled around, I would have happily allowed myself to be carted off wearing elongated sleeves tied at the back and a bag over my head.

Sunday opens with the Girl wanting to wear her pretty summer dress with her Pooh Bear sandals. Every year it’s the same. I tell her it’s mid winter and she’ll wear something warm. She acquiesces but only because she knows she has presents in store.

We arrive at Valentines fifteen minutes early. The waitress seats us and asks if I’d like a drink. I check my watch. “It’s a little early,” I tell her.

“We’ve got a lovely Villa Maria chardonnay,” she tells me.

I’m tempted. Nobody else has arrived and the Girl is demanding presents. I tell the waitress to make it a big one, then give the Girl her first present, the jersey I bought her with the doggie print on the front. It’s not a CD or a game. She gives it a disgusted once over and flings it aside just as the waitress returns with my drink.

“Presents,” the Girl is telling me.

I slug the wine back so fast, my taste buds are going, “What the hell was that?” when the Chukker Boy arrives.

“Happy birthday,” he tells the Girl.

“Presents,” she replies.

He slips a rectangular package across the table and she opens it, saying, “Games.”

While she’s inspecting the games, Uncle Plunkle and Joey-nana arrive. They also wish her a happy birthday. They’re also met with demands for presents. They pass a rectangular gift across the table. The Girl tears open the packaging. It contains coloring books and crayons. She’s delighted.

So far, the day is meeting all expectations—games, coloring books and crayons, followed by a slap-up feed. This is a girl who does not appreciate surprises. She is, however, prepared to overlook the disappointment of the doggie jersey, because she’s thrilled with her other gifts.

When all presents have been opened and examined, she wipes out a plate of foods that should never be served in the same restaurant, let alone on the same plate. She eats amazingly well for someone in her condition, but the day has taken it’s toll. We’ve no sooner finished our desert, and she wants to go home. We wave our party guests off, and head to the car, knowing another successful birthday is out of the way.

It’s a birthday I didn’t think she’d see.

It’s just as I plunge the key into the ignition, and say, “Did you have a lovely time?” I realize that her internal clock ticks over.

“Christmas,” she tells me.

“Excellent,” I mumble as I start up the car. “I can hardly wait.”

It’s now August. I have no idea if the Girl will make it to Christmas, so next month we’ll put up the Christmas tree.

What’s the point in waiting?

And at least I’ll have three weeks to decide what to do about the presents …

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The Learning Curve

Chookie Lou's PlaceI can’t believe it’s almost two months since I posted here. For a while there, I thought my life was about to be funneled into caring for the girl with little time for anything else. In January, we were given six months. Here it is August already. There are moments I can’t believe we’ve made it this far.

We had her birthday in June. We went to Valentines family restaurant. On our way out, she asked about Christmas. Some things don’t change.

Some do.

The Girl’s blood tests tell us that her liver is in ‘terrible shape.’ So what’s new? Her liver has been in terrible shape for I don’t know how long. Over the past six months, I’ve been hoping for the best, and expecting the worst. We’ve had periods of wellness followed by bouts of disaster which have been resolved back into periods of wellness. I’ve had some amazing support along the way. One thing I’ve learnt is that this is a journey that requires a lot of support. And good decisions.

So here are a few of the things I’ve learnt that help me deal with each day as it comes:

If mealtimes become difficult, don’t sweat it. Appetite is often the first thing to go. This time last year, the Girl would eat anything and everything—and often things she shouldn’t have. Nowadays, it’s hard to find anything she wants to eat at all. She’ll request roast chicken, then push it away untouched. She’ll demand toasted cheese and onion sandwiches, only to find she can’t swallow them. I made pork dumplings after she bleated bout them for an entire day, only to have her eat two, choke, and leave the rest.

For a caregiver, self-preservation is the key to surviving this journey. I’ve learnt to prepare whatever meals are easiest. If she doesn’t eat it, I’ll make something else that’s easy. Canned corn has become my trusty backstop. If that fails, it’s a meal replacement milkshake. Last week she had a Goody Gumdrops ice cream and a meal replacement drink for dinner. It played havoc with her blood sugars, but I’ve learnt that sometimes it’s about quality of life.

Pain medication has been another learning curve. Offering her stronger pain relief sounds like a no-brainer. What isn’t obvious is that pain treatment comes at a cost. The downside of her pain relief is constipation. With her liver functioning as poorly as it does, it can take as little as a day for toxins to build up in her system. If I give her Paracetamol with Codeine, I’ve learnt to follow it up with a laxative. I now administer Paracetamol and Codeine along with a laxative as a matter of course. It’s not always easy to work out her pain levels. She has a high pain tolerance. But despite the Girl’s lack of communication, I’m getting better at figuring out when she needs it.

I’ve learnt that because the Girl’s liver isn’t functioning properly, it doesn’t distribute glucose as it should. That means if her evening meal isn’t reasonably substantial, her blood sugars will drop overnight. If they drop in her sleep, she could easily slip into a coma. Now, I check her blood sugars at bedtime, during the night, and first thing in the morning. I also keep a jar of jellybeans on hand for times when it drops too far. I can’t tell you how many breakfasts a delighted Girl has kicked off with a handful of jellybeans.

I’ve learnt to accept help. This has been the the biggest concession for me. Up until recently, I thought it was my duty to soldier on; that because my Girl spent time in care, that she deserves it, that this is her time. She loves her home and her room. She loves her routine, her music and her Playstation. There have been times when I was under so much pressure, my stress levels rose and I felt like I was failing her. I’ve come to realize that if I’m to last the distance; if I’m to be there for my Girl, I can’t do it on my own. I have a lady who comes in three nights a week to sit over while I sleep. That’s funded by the state. I can’t say how grateful I am.

And finally, I’ve learnt that taking breaks is vital. Because the Girl is more at ease in her own environment, it’s easier for me to go away than to send her anywhere. This weekend, the Girl’s wonderful art teacher has offered to care for her while I spend three days with my sister, Chookie Lou. The picture above is from the front windows of Chookie Lou’s home. It’s not too shabby. I’ve stayed with Chookie Lou a total of three times this year. It’s not easy to leave my Girl behind. I’m reluctant to take time away from her while she’s well. I don’t want to miss any of the time I have left with her. On the other hand, if I’m going to stay the distance, I need to keep my sanity. Last Wednesday night, she wasn’t well. She dozed for an hour during the night and finally drifted off to sleep at 6:15 am. It’s not the first time. I wind up a zombie the following day. I know I’m a better mother and a better caregiver when I’m rested. It’s a wise decision to take the time away. But I miss her more than I can say.

Lessons have a habit of coming along when we need them. Some lessons are tougher than others.

If you’re caring for a terminally ill loved one, take the path of least resistance, grab any help you can, and take breaks when opportunity arises. Those opportunities may not come back. Looking after yourself doesn’t mean you’re weak. It doesn’t mean you’ve failed. It means you’re thinking rationally. It means you’re in this for the long haul.

And I applaud you for it.

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