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chrys 380x569 This is what dementia has done to my mum.

Chrys Stevenson

 

 

 

 

My 87 year old mother, Daphne, is sobbing in my arms.

“I don’t know what I’m going to do! I’m useless! I can’t remember anything and I make you so frustrated!”

My heart tears as I try to reassure her.

“You’re not useless. Think of all the things you can do.”

It hasn’t been a good day. Daphne got lost in the shopping centre. When we got home, she couldn’t remember how to retrieve a message from MessageBank. I wrote the instructions on a piece of paper for her and, after a couple of tries, she managed to get the message.

“It’s for you,” she said, “Randall Someone rang”.

“Randall WHO?” I snap, still shaken over the fact that she’d been wandering, lost, through the shopping centre after forgetting where we’d arranged to meet after my optometrist’s appointment.

“I don’t know!” she sobs, “I CAN’T REMEMBER!”

So now I’m wracked with guilt that I’m a grumpy, impatient bitch and my beautiful, gentle, precious mother is distraught and it’s ALL MY FAULT.

This is Alzheimer’s disease – and, as Daph keeps reminding me, “It’s only going to get worse, dear.”

I sit her down and try to explain myself.

“I know I snap at you. And I know it sounds like I’m mad at you. But I’m not mad at you, I’m just worried … and scared. I didn’t know where you were in the shopping centre. I didn’t know if you’d gone looking for me out on the street. I didn’t know how I was going to find you.”

“But … I …. can’t … even …. use … MessageBank!” she sobs.

I go to my study and grab a pen and a piece of paper. I write out MessageBank’s number and our PIN and tape it to the wall over the phone.  (Why hadn’t I done this before?)

“There! Now you don’t need to remember.”

I use my mobile to leave a new message, then I stand with her while she retrieves it.

“See, you can do it. You can do lots of things, and if you can’t remember, we’ll just write it down so you can!”

The sobbing eases, we hug and all is forgiven. But I still feel terrible. I have to learn to be more patient.

Alzheimer’s is insidious. It’s so easy to put those early lapses of memory down to old age. At first, when I raised an eyebrow at Mum’s forgetfulness, she’d stick out her tongue and say, “Don’t look at me like that. You’re always forgetting things.”

And she was right. Middle age is a bitch.

But I knew something was seriously wrong the day we were out shopping and I said, “We need to buy a mat for the laundry.”

She looked at me blankly.

“What’s wrong?”

“The laundry,” she said, “I just can’t picture the laundry.”

We’d just spent thousands having the laundry renovated. It was her pride and joy. It was inconceivable that she couldn’t picture it.

“You know!” I said, “Your beautiful new laundry!”

The blank look persisted.

“Where is it in the house?” she said, “I just can’t think …”

We’ve lived in the same house for 10 years.

I also started to notice that Daphne would fixate on a question and ask it repeatedly throughout the day.

“I just told you that,” I’d say. She’d look hurt and I’d feel awful.

Now I just keep answering the question until she says, “I’ve already asked you that, haven’t I?”

And yet, Daphne can remember the names of every kid in her grade one class and the names of all the neighbours on the street she lived on in the 1930s. She can do a crossword, play the piano, maintain a huge garden, and hold a perfectly sensible conversation. Hell, she even finishes the cryptic crosswords I’ve given up on! She does her own hair and make-up and still has the fashion flair, figure and posture of the 1940s beauty queen (Miss Empire City) whose sepia photo hangs in the hall.  In almost every respect, Daphne’s a marvel – but the marvel’s memory was failing fast.

It took a few visits to the GP to convince him this was something more than just old age – although I knew that Alzheimer’s was only one possibility. I’d read that memory loss in the elderly is too often wrongly diagnosed as Alzheimer’s when, often, the symptoms are caused by prescription medications. Our doctor agreed to an experiment.

With his guidance and approval, we stopped or replaced any drugs likely to cause memory loss. I had great hopes this would be an ‘easy fix’ and our lives would return to normal. But changing her medications caused other problems and Daphne’s memory didn’t improve. It was worth a try but, as we gradually eliminated other possibilities, it seemed increasingly likely the problem was some form of early dementia.

Then the hallucinations started. Daphne woke up one night to find her room full of Asian-style furniture and the doorway blocked by a large potted palm.

“I knew it wasn’t really there,” she said. “I knew I must be dreaming. So I poked myself in the eye to wake myself up. It hurt, so then I knew I wasn’t dreaming but I couldn’t work out why all this stuff was in my room.”

Another night I woke to her calling out and scratching frantically at her bedroom door.

“Chrys! Chrys! I can’t get out! I can’t get out! The room’s full of pink furniture!”

I have to admit, I’d be desperately trying to escape if my room was full of pink furniture too!  But this was no laughing matter, it was time to see a gerontologist.

My grandmother had Alzheimer’s. I knew this must be in the back of Daphne’s mind, but up till now, I’d studiously avoided using the ‘A’ word.

But, as we wait to see the gerontologist, I decide I have to be the one to broach the possibility – not the specialist.

“Mum,” I say. “You know we’re going in to see the gerontologist, and he’s going to try to work out why you’re having trouble with your memory.”

“Oh, is that why we’re here? I was wondering about that.”

I take her hands in mine, “We don’t know what’s causing your memory loss – it might be all sorts of things – but you need to know that the gerontologist might say you have Alzheimer’s.”

“Yes,” she replies calmly, “I know.  I’m getting just like grandma, aren’t I?”

We see the gerontologist and he confirms my suspicions.

“It’s probably early Alzheimer’s,” he says, “although it may be another form of dementia – or a combination. It’s almost impossible to tell. We’ll do an MRI and have her tested by a neuropsychologist, but that seems the most likely diagnosis.”

Alzheimer’s or dementia – whatever we call it -  the effect will be the same; a (hopefully) gradual decline until there is less and less memory, less and less independence, and, eventually death.  Dementia is incurable and terminal.

There are drugs, the gerontologist explains, that might result in some improvement and slow the rate of decline. That’s good news. We decide to think about it.

“There’s plenty of time,” he says, “you’ve caught it very early. We usually don’t see patients until much, much later than this. Their relatives just put these early symptoms down to normal old age.”

I mention I’ve read that the earlier Alzheimer’s is identified, the more successful the treatment.

“That’s true,” he replies, “the medication usually only provides a small improvement and, if it works, the decline plateaus from that point, so it’s good to get an early diagnosis and start from a higher base.”

We leave his office and I sit Daph down in the waiting room.

“Do you understand what the doctor just said?” I ask her.

“Yes,” she says, “And I’m really angry. How rude just to blurt out that I had Alzheimer’s like that, when I wasn’t expecting it. You’d think they’d give you some warning!”

Ah well, I tried.

We had a rocky six months after the diagnosis was confirmed. As Daphne’s short-term memory continued to decline, we decided to try the drugs.

The gerontologist put her on Aricept. Daphne’s small and doesn’t react well to new medications. The Aricept made her gastric. Being gastric reminded her she was on a new drug. Being on a new drug reminded her she had Alzheimers. Having Alzheimers reminded her of her mother’s last years. She became teary and depressed. The doctor prescribed anti-depressants. They made her head feel ‘fuzzy’ – and they made her gastric, too. There were more tears and distress.  Daphne began to feel that her life was over and I began to wish mine was!

Finally, in desperation, (and in consultation with the doctor), I halved the dose of the Aricept until she could get used to it. We changed the anti-depressant to something she could tolerate better. To optimise her memory, I’d tried to keep her off any drugs that had a neurological effect; but it didn’t help her memory and made her life harder. Finally, I relented and asked the doctor to put her back on the ‘tried and true’ drugs. We’ve juggled so many combinations and doses of drugs I reckon I deserve a degree in pharmacology. I researched Alzheimer’s, memory loss and ‘hypno-pompic’ hallucinations so thoroughly the gerontologist asked if I had a medical degree!

“No medical degree,” I replied, “Just a PhD in Daphne.”

Things are generally good now. We have bad days where the stress of being a carer combines with the fear of what lies ahead and turns me into a cranky, impatient bitch. Daphne has days of great lucidity and days of fog. But, generally, she’s happy and well and back into her old routine and I believe the Aricept is helping with both her memory and her mood.

As I write Daphne’s playing classical music on the piano. How can a brain that can’t remember something that was said 10 minutes ago, still cope with the complexity of a musical score? I don’t know, but I’m glad it does. Nothing gives me greater joy than to hear her play.

I’d like to say I don’t know what the future holds, but I’ve seen the future. Mum’s mother, Clara, had Alzheimer’s. Eventually, we had to put her in a nursing home. Mum visited her nearly every day until she died.

I can only hope we can ward off the decline and keep Daph at home, happy, active, intellectually stimulated and independent for as long as possible. But we’ve been pro-active and found a lovely nursing home, and we’ll book her in sooner rather than later. It doesn’t mean we have to commit – it just means it will be easier to get her in to a place of our choice if that becomes necessary.

Meanwhile, I try to maintain some independence of my own. I have my ‘causes’ and I make an effort to stay in contact with friends. I can go out to dinner – Daph’s fine as long as I leave a note reminding her where I am, when I’ll be home, and how she can contact me. I can even go away overnight – although this requires the fridge being wall-papered with notes. For longer absences, a friend or a relative comes to stay.  It’s manageable.

I try to be creative. Since the hallucinations started, I’ve put a monitor in Daphne’s room so she can wake me easily if the pink furniture monster comes back. I’ve also installed motion sensor lights, so she never wakes up to the shadows of a dark room. So far, so good; no more hallucinations.

I’m not a doctor. I have no medical training whatsoever. But, as someone living with a parent with Alzheimer’s, I’d say if you’ve noticed memory loss in your elderly parent, don’t just accept it as normal. Watch them carefully, note what’s happening, broach the subject sensitively and ask if you can visit the doctor with them.

Be their advocate – don’t let the GP brush off your concerns. Respect the GP’s expertise, but ask for a referral to a specialist if your gut instinct tells you something is wrong. Do some research so you know what questions to ask, and what symptoms to look for. Don’t assume that a little knowledge from the internet makes you smarter than your specialist – use your new-found knowledge to work with them, not against them.

Don’t leap to conclusions and assume the worst. Dementia isn’t the only thing that causes memory loss. Ask your doctor to review your parent’s prescription medications and explore other possibilities.

Try to be patient, but don’t beat yourself up when, after being asked the same question ten times, you snap, “I just told you that!”

You’re human and dealing with a parent with Alzheimer’s is stressful and frightening – but do try not to be cause of more angst than necessary. If you’re frightened, just imagine how your parent feels! Talk to each other.

Find creative ways to help your parent cope and stay independent. Buy a whiteboard. Use notes. Don’t assume they’ll remember – write memory prompts where they can’t miss them. Daph struggles to make up soup from a can, but she can do it like a champion with a set of clear instructions taped to the kitchen cabinet.

Importantly, don’t treat your parent like a child. Your parent has memory loss – they haven’t mysteriously metamorphosed into a five year old. I don’t just assume I can go into the doctor’s surgery with Daphne – I ask if it’s OK. I don’t just make arrangements or accept invitations on her behalf – I ask her first. If we’re seeing a specialist and I’m asked a personal question about Daphne, I’ll say, “Do you mind me talking about this?”  Just as I asked if she minded me writing this article.

I try to involve Daphne in as many household decisions as possible.  I might be 53, but she is the mother, not the child, and that relationship should be respected.

If you have to become your parent’s carer, try to have a life as well. Your parent’s independence and happiness will depend a lot on yours. Enlist the help of friends and neighbours so you can spend time apart from your parent and go out with friends. Government and community support is available as well – look into it. Don’t be martyr. Ask for help when you need it.

And, finally, remember, that laughter and empathy go a long way towards easing tensions. This may come as a shock, but you’re probably not perfect either.

“Do you want a cup of coffee, dear?” says Daph.

“That would be lovely,” I reply.

About 20 minutes later, she comes back into my study.

“Would you like a cup of coffee, dear?”

I raise an eyebrow.

“I’ve already asked you that haven’t I?”

“Yep – about 20 minutes ago.”

“Did I make it?”

“No.”

Her eye rests on a full cup of stone-cold coffee sitting on my desk.

“Then what’s that?” she says, pointing accusingly at the ‘evidence’.

“Ummmm, that’s the coffee you brought me 20 minutes ago,” I mumble sheepishly.

“Sorry, I didn’t remember you bringing it in.”

The triumph on Daph’s face makes my humiliation worthwhile.

But, oh dear! Am I next?

Chrys Stevenson is a freelance writer.  Chrys will be the guest speaker at Dying with Dignity’s NSW AGM and Conference to be held from 2pm-4pm, this Saturday, 24 March at the Sydney Mechanics School of Arts. The topic of Chrys’ speech is “The Debate on Assisted Dying: Distortion, Misinformation and the Influence of the Religious Lobby.” The public are welcome to attend and admission is free.

Has someone close to you suffered from dementia?

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