24 hours: An alzheimer's carer

CLAIRE ALLISON

Bill and Mary* moved to South Canterbury to be closer to family when Mary began showing early signs of Alzheimer's. The disease has progressed and Bill now provides fulltime care for his wife.

Up until  about a week ago, I used to shower Mary. I'd get up, go and do my ablutions. Mary would still be in bed. So I get the breakfast, take that to Mary, and give her her medication, get her up after that and give her a shower.

Because of her age, she's getting infirm as well. For getting dressed, she can't do buttons, can't do up her bra.

With the Alzheimer's, she doesn't know what to wear, how to separate the old (already worn) stuff from the new stuff, and to put the old stuff in the washing machine.

About two months ago, she developed incontinence. Very often she has a bit of an accident going to the loo, so the morning chore is to clean up the floor around the bathroom. This morning she had an accident in her slippers, so they'll have to go into the washing machine.

After breakfast, and I've tidied up – done the dishes, put things into the washing machine – by this time, she's sitting in a chair, maybe doing her hair, just pottering about. We get into the car and take the wee dog to one of the nearest stop banks and a place to walk. And we have a very short walk.

Mary has a stick, so we go so far until she says her knees are beginning to get sore, and we turn around and go back. So that's half an hour or so.

Then we go back to the house and I make coffee, and we have coffee. After that, we might go back in the car again. We might come into town and meet our daughter and her family and have a sandwich or something for lunch, and do anything else that we might need to do in town. But we can't do very much because Mary can't walk far. She gets very tired.

We'll go back home, so that might be early to mid-afternoon, and I might try to cut the grass. I have a fair bit of grass, and we inherited a ride-on mower when we bought the house. So I go around the grass once with Mary in the house, but I have to go in to see what's happening. If I'm away too long, she starts doing things. Such as packing things up to "go home".

So I do one round and then come back in. It takes me about an hour to mow the lawns. By that time, it might be 4pm, so I might run out and take her to visit our daughter and the family; they're just along the road.

Then I might begin to think that we haven't done anything about our tea, so we go to the supermarket and do our shopping on the way home. Mary doesn't come in with me. She prefers to wait in the car, but I've got to leave a magazine with her.

We go home and start preparing the tea. Mary will say, "Can I help you?" I say, "Yes, OK, you can come and peel the potatoes." She starts to peel the potatoes, which she can do, but it takes a while.

I start cooking, and Mary's normally sitting down now. She used to like a G and T, so I pour her a G and T, minus the G.

This time, this is the time for the sundowners. The sundowners is a recognised period of time – usually late afternoon, early evening – when she begins to get difficult. That's when the "I want to go home" syndrome starts: "I want to phone my mother and father; what's happened to my little children?" I tell her they're fine, and she says, "You always say that." So I might ring our daughter and she'll tell her they're fine. By this time, I'm running back and forward to the cooker.

Then we have tea, clear up the dishes, and Mary can sit and look at a magazine. She can't read it, although she reads the paper. Sometimes she asks, "Have you read this?" and I think, "I haven't had a bloody chance!"

The great thing is to be aware of not losing your temper. You have to be calm, you have to go with the flow, you have to agree with everything. Tolerance – you must be tolerant. Initially that was very hard. But you get into it, and that's quite normal now. Once you have calmed it down a bit, you change the subject, and that's quite easy to do, to take it off the beaten track.

She gets very, very sad at times, very depressed. There's a modicum of realisation that she is missing something. Yes, that makes it worse.

For about a year now, most of the time she doesn't recognise me as her husband. I'm the man who helps her. She often says, "Oh, what a shame Bill's not here. You'd have enjoyed having tea. Where is he?"

Initially, I'd say, "I'm your husband, we've been married 55 years." And she'd say, "Ha! Fat chance! An old man like you?"

That was quite hurtful. Now, I have a wee laugh. But that was a big thing. There are times when she does recognise me as her husband, though I can't tell exactly when. And there are times when I'm not allowed to open my mail, because it's Bill's mail. So I have to take it away quietly and open it.

The evening goes on, and generally she gets over the sundowner about 7pm, 8pm, and is fine. We'll have a quiet evening, watch television, although she doesn't realise what's happening on TV – she can't follow a story.

She has a book, which she has been reading for the last two years. But she forgets immediately or virtually immediately what she has just read. One of the things she's very good at is ironing. She likes to iron, but can only do it for a certain amount of time, because she gets tired.

At the end of the day, I help her undress. I find the incontinence thing very difficult – I take off her underpants, put them into the bin, and put on new pants for the night.

She gets up five, six times a night. I've got to keep an eye on her. Sometimes she goes the wrong way to the loo. I've got to make sure she goes the right way, and make sure she lifts her nightie high enough. The other night, we went through three nighties.

Earlier on, about a year ago now, I woke up, and she wasn't in her bedroom. I got up and wandered through the house, shouting her name. There was no answer, and nobody in the house. I went back to the bedroom and her clothes were still there, but her dressing gown was gone. I went outside, looked around the garden. We've got a creek that goes out the back. So I took a torch and had a quick look around the creek and the garden ... this was about 3 in the morning.

There was nobody there. So I ran up the road, had a look up and down the road. Then I came back, phoned 111, phoned our daughter and her husband, and within five or 10 minutes there was a whole horde of people around, and the police arrived. The search started, and eventually she arrived back sitting in the front of a police car, quite happy.

So, we went inside, had a cup of tea, thanked the policemen. She'd walked about a mile, and somebody found her in their garden.

Since then, I've been locking the doors so that she can't get out ... but the thing with that, because I take the keys out of the locks, if there's a fire, or if I have a heart attack, we have a problem.

That was the wake-up call for getting everything going.

It's a 24/7 job. The routines take up a fair bit of the day. Now, a lovely lady comes in and showers Mary and dresses her in the morning. That eases quite a bit of the work.

At night-time, getting ready for bed, that's no problem. It's all par for the course; I don't mind that.

Mary now gets two days a week at a local rest home. I take her there at 10am and collect her at 3pm. It gives me time to do ordinary things. Nothing special. Or I could take a couple of hours fishing. The social life is currently nil. I don't get my exercise that I normally would like to have – I used to like a long walk in the morning, but I can't do that now.

I painted quite a lot. I used to like painting, watercolours, but now the steam has gone out of that, the mental attitude has gone. I might manage to start up again sometime.

The family are very supportive. Our daughter takes Mary away every Monday for the day, which is great, and then I go along at about 5pm and collect her. And very often we go out for tea with the family.

What's the hardest part? It's a bit of everything, I suppose. Just a bit of everything. It can be stressful, no doubt. When you're in the shower, you're wondering, what's she doing? She might be putting on the potatoes at 2pm.

But as Karen [Karen McKenzie, Alzheimer's Society South Canterbury community liaison officer] says, you can't afford to let it get you down. You have got to laugh and you've got to play the cards that you were dealt. She's a power of strength, and has pointed me in the right direction time and time again.

It dominates two lives – it's not just Mary it affects, it's me as well.

Names have been changed to protect privacy.

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