Tag Archives: caring for the disabled

Gonna Be a Bright, Bright, Sunshiney Day

My GirlI’m delighted to report that every day since her latest spell in the hospital, my Girl’s abscessed needle sites have improved and she’s gotten better and better. Of course, there are pros and cons to moving forward. Aren’t there always? However:

On the One Hand:She’s singing again. As I write this, she’s very appropriately bellowing out Tom Petty’s, I Won’t Back Down.

She can tell me when she’s in pain. That means I can do something meaningful about it. No guesswork … or at least, minimal guesswork.

She smiles. I cannot express how wonderful that is.

She can hold her sipper cup, and drink by herself. She has tremors, but she can get the spout to her mouth, and finish an entire drink without help. A far cry from having to administer liquids by dropper or straw.

With an acceptable level of spatter and particulate spread, she can eat a sandwich. It requires some damage control, and a change of bedding, but it’s forward momentum.

She’s meowing. Yes, when my girl is happy, she doesn’t purr, she meows. It’s gorgeous.

I can get her into her wheelchair and move her short distances.

As a result of the wheelchair reintroduction, she’s going to her program. She’s only attending for a couple of hours a day, but it’s another step forward.

I can toilet her. The wheelchair also means I can get her to the toilet, and that reduces …well, cleanup.

All the above brings us close to the return of normality. It does not always go according to plan.

The toileting routine, for example. It’s not perfect. But it goes like this:

I begin by swivelling the Girl in her bed, with her legs over the edge. Next, I sit her up, let her get her bearings. After being horizontal for so long, her brain isn’t used to be vertical. It takes a while to allow her to adjust.

When she’s ready, I crouch low, my arms around her (avoiding the wound sites), her arms around me, and I lift. We quickly swivel her on her feet, and sit her in her waiting wheelchair.

I wheel her to the bathroom. Experience has taught me to take great care not to whack her elbows on the doorframe. (The whacking, however gentle, produces screams that are often far out of proportion to the whack)

At the toilet, I take the footplates off the chair, place a pillow on back of the toilet, release the tabs on the diaper, and repeat the stand and swivel. To return, we repeat the process in reverse.

Sometimes it goes badly. Like this morning.

We do the swivel from the bed. She’s a little unsure, so there’s a squeal. I reassure her that I’m holding her, that I won’t let her go. She gets to her feet, swivels easily to the waiting wheelchair.

We do the bathroom run, sans elbow-whacking. I’ve even remembered to take off her socks so she doesn’t slip on the floor—also learnt from previous ear-shattering experience.

The return is not so great. Despite the socklessness, she swivels, loses her confidence. I have both arms around her, but she’s screaming, “Fall, fall.” I’m saying, “I’ve got you. You won’t fall.”

She doesn’t believe me. She screams at the top of her lungs. Her mouth just happens to be two centimetres from my left ear. She screams again. I yell, “I said I’ve got you. Now turn! TURN!”

She’s not turning. She’s screaming, and now she’s gone “boneless.” Still yowling at a glass-shattering pitch, she slithers out of my grasp, and slides to the floor. It’s like trying to hold a 36kg beach ball wrapped in cellophane. Go ahead, picture that.

I’m still yelling, “I’ve got you, I’ve got you!” Which patently isn’t true. We’re now wedged between the wheelchair and the toilet. It’s a gap of around one square meter. If that. She’s flopped against the wheelchair with her legs between my feet.

I can’t move the chair. It has to be positioned to take her. I can’t turn around. Getting her up off the floor and back into the chair necessitates a dead-lift of 36kg, straight up. She’s still screaming. I almost get her there, but she arches her back and goes down again. I drag her up, screaming reassuring words at her. This time, I poise her on the edge of the chair but she’s kicking out, deliberately sliding back off the edge of the chair so she can make her point that I’m not in control of this situation, and proving that she can slip back onto the floor anytime. I grip her upper arms, and round the chair, and just as she begins to slide, I wrench her back up onto the seat. I quickly wrap her naps, and a blanket around her, reaffix the footplates, wheel her back to her room. Just as I tuck her back into bed, she looks up at me, and says, “Go to the video store?”

I’m like, “Yeah, sure, that’s really gonna happen.”

Our house now resounds with the words, “Want hot chocolate. Want Smurfs. Go toilet.” It’s accompanied by a loving but hollered reply of, “Gimme a break! I’ve only got two hands!”

I hate to think what the neighbours think.

Baby steps, I keep telling myself. We are getting there. I know it won’t last. I know it’ll only take one minor setback to go back to where we’ve been.

But believe it or now, I’m savouring what we’ve got, while we’ve got it.

And getting help for toileting.

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Filed under Parentlng alone, Terminal Illness

The Problem With Terminal Illness

Beach 007It seems obvious. But here’s the biggest problem with a long, slow terminal illness – it’s just that. It’s long, it’s slow, and it’s very terminal.

For me, it’s like being behind the wheel of a slow-moving car. For much of the trip, the car has been relatively comfortable. We’ve hit a few bumps along the way, but we’ve recovered, got a grip on the wheel and carried on.

Somewhere in the back of my mind, however, I’m painfully aware that this is very much a one-way trip. The car joggles along at a leisurely pace, but I’m not fooled into thinking this is some Sunday drive. I know we’re moving ever closer to a terrible collision, and there’s no way I can avoid it.

There’s no option for simply veering off this road and onto some tributary that’ll take us to a place of safety. It’s like a narrow pass etched into the side of a mountain. We’re stuck on this course and there’s nowhere else to go. Believe me, I’ve looked. I’ve searched the terrain for offshoots I can steer us up; rest stops I can pull into. And despite the fact that our journey takes place at seemingly snail-pace, I look out the side window and I’m watching the landscape of time passing us by. In January, the doctors gave the Girl six months. I have no idea if it will indeed be a six-month journey. I watched summer go by and now here it is autumn. It could be a twelve month journey. It could be longer.

And here’s one of the big problems with journeys like this – those around us, friends and family, see our days melding one into the next. They think that today is exactly like yesterday and the day before that. Believe me, I’ve fallen into that trap. I’ve woken in the night panicking because I haven’t taken enough photos of my Girl, haven’t spent enough time or sung enough songs with her. Suddenly, I find items on that Bucket and Spade list that probably won’t get ticked off, regardless of how mundane they are.

The Girl wanted to go to Valentines. I doubt we’ll get there. Even if she could sit through a couple of hours at the table, I know she wouldn’t eat because all she wants these days are the meal supplement milkshakes I make her. She wanted to go back to the beach again. I was lax. Life got busy. Then one day, summer was gone. It’s too cold to take her to the beach to play in the sand, and even if it was warmer, it’s getting too hard to take her on my own. This is time we won’t get back again. We’re in a steady descent on this journey and those opportunities are now in the rear-view mirror.

And that’s the other problem with a long, slow illness. Just like me, others forget. They know The Girl is ill. They’ve know for six months, some longer. But they have their lives to get on with. They have sick mothers to tend to, and grandchildren approaching their first birthdays. They have trips away and work commitments and all the usual stuff filling in their days. I don’t blame them. My days are full. People don’t see it. They think I sit home enjoying myself.

Believe me, nothing could be further from the truth.

Take yesterday, for example. The Girl didn’t wake early. She didn’t sleep the night before because she had ear ache. She told me she had sore feet, sore tummy, sore eyes. I got up and gave her Panadol and Codeine and went to bed. When she didn’t settle, I got up and took her to the toilet. When she began to cry that her ears were still sore, I sat up and rubbed them. Then I got a hot water bottle and put on her pillow. She finally settled at some time after one o’clock and I went back to bed.

The next morning, she slept late and I let her. Saturdays are art class. She adores her art class. So at nine, I woke her. She didn’t want breakfast, just the milkshake. I got her ready, which takes more time now because I have to assist her everywhere in case she falls. Showers take longer, dressing takes longer. I finally got her to art at close to ten thirty. She said she wanted roast chicken for dinner so I went to the supermarket and got a chicken for her. I got home at twelve, and the phone call to come and get her came at two.

Her art teacher said she’d been complaining about sore ears, so I took her to the emergency medical centre. Two-hours and $70 later, we got the same diagnosis on the ears as we did on Wednesday when I took her to the doctor – a little wax, but no infection. I took her home. She never ate lunch, didn’t want dinner. I put her to bed early and gave her a milkshake.

I have no idea where we are in this journey. I have no road map to indicate how far along we are.

All I know is that this car has no brakes so I can pull over; it has no horn so I can signal others when I’m scared. There are no lights I can flick on and off to alert people to the fact that I’m in this car alone and I need help.

Please, if you know someone in their own car. If there’s someone near you who’s caring for a loved one in the final stages of their lives, please, just pick up the phone. You don’t have to do anything. It doesn’t even take much time. Just ask them if they’re okay. Ask them how their loved one is. Let them know someone out there cares. And do it often.

You have no idea how much it will mean to them.

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Filed under Parentlng alone