September is World Alzheimers Month. Below, a husband talks about his wife’s diagnosis and how it has changed their lives.
There are still many good days, moments the devoted couple of 60 years can enjoy ordinary moments they used to take for granted.
For a Marlborough husband and wife, who asked not to be named, an uneventful trip to the supermarket, or even watching TV and laughing together has taken on a special significance.
A diagnosis of Alzheimers for the wife earlier this year changed both their lives in an instance.
“It’s a real defining point, especially for the patient, I hate that word, but use it anyway.
“Once that word, Alzheimers, comes up, you’ve crossed the Rubicon and can’t go back. It took a year to come to terms with it,” he says.
Dementia affects nearly 80 per cent of New Zealanders in some way.
Early warning signs include forgetting conversations or denying they took place, repetition, misplacing items and forgetting where to find household objects.
There is a gradual decrease in socialisation and, latterly, confusion over family, time and place.
For the husband, looking back, the signs were all there.
“The first signs began about five years ago. She was forgetting conversations or that we were going out for tea and would say I hadn’t told her.
“I had a feeling that this was more than just forgetting things, something was out of kilter but as I didn’t really know what was going on, I had to find a way to adjust.
“The worst thing for me, apart from the terrible time my wife is going through, is that there are two of us in this situation. I’ve no experience with this and the impact is huge,” he says.
One of the first tasks he undertook was to contact Alzheimers Marlborough.
The support and information they have provided has proven invaluable, he says.
Almost 70,000 Kiwis are living with dementia. More than 170,000 Kiwis will be living with dementia by 2050
Dementia also impacts women at a higher rate, showing a 30 per cent greater prevalence.
In a cruel twist of fate, the slow progress of the disease in this case means the woman in question is aware of the changes and the likely course the illness will take.
“She’s aware [of what’s happening]. It would be easier if she wasn’t. Being aware and having to come to terms with it is the difficulty,” her husband says.
“Between 70 and 80 per cent of the time we can carry on a semblance of a real life.
“No two days are the same. There may be two days when it’s calm and everything is nice and peaceful. You learn to make the most of the good days.
“My wife still has hope from time to time and will sometimes think that she’s not actually as bad as she was.
“I can’t hope like that,as I know that this condition is irreversible”
Likening the illness to a photograph album that is gradually losing its pictures, the retired husband says routine is key when it comes to helping minimise distress.
Where once this committed couple were ardent travelers, the illness has effectively clipped their wings.
“Travel is an upsetter. Travel was a big and important part of our lives, it’s still something she sometimes looks forward to but also has the nouse to know that long distance travel is not an option anymore.”
Alzheimers NZ represents people living with dementia at a national level.
The organisation provides information and resources, advocates for high quality services, and promotes research about prevention, treatment, cure and care.
Being open with the couple’s children, all of whom live overseas, the couple’s friends and neighbours has helped.
There is no point in pretending it’s not happening, he says.
But having to be selective about what information he passes onto his wife has been “difficult”.
“The subterfuge is difficult. Sometimes you have to simply let them believe wholly that something that isn’t true is true or indulge in small white lies.
“I feel bad about that but after a while you get used to it, you do. What you’re doing all the time is thinking for two people,” he says.
Picking his battles has proven key.
“Sometimes at the supermarket we’ll end up with three items of the same thing, it doesn’t really matter if she’s happy.
“You need to choose your time to walk away. If there’s a hint of an argument, her focus narrows and becomes more self centred.
“I’m more often in the wrong now and the simple thing is to become the bigger person. The most important thing for me now as the ‘carer’ is to have time out to relax or indulge in another activity.”
“You cut your losses and give in if it doesn’t really matter,” he says.
The future is very much on his mind and ultimately, he knows there is no happy ending.
“I think about it all the time, it’d be foolish if I didn’t.
“You can’t make any definitive plans you can only take guesses. You do have to think about the ultimate; there’s no answer to that at this stage.
“I just have to keep an open mind; hope for the best but know to expect the worst. For further information, help or advice visit www.alzheimers.org.nz/marlborough or contact 03 577 6172.
Alzheimers Marlborough are holding a Memory Walk on Saturday 21 September, leaving the Munro Street Car Park at 10:00am. Registration is completely free and can be made prior to the day by phoning the office – 577 6172. Wear something purple. The Memory Walk is for people of all ages and abilities to remember family and community members that have been or are affected by dementia.