Ticking Timebomb: living with a life-changing loss
Whatever name you give to it dementia is indiscriminate and cruel. And the figures are sobering, in New Zealand 62,287 people were diagnosed with it last year and that number is picked to grow to 170,212 by 2050. Yet our understanding of the disease is still limited, there's still no cure and everyone's experience of it is different. Stu Hunt looks at two different perspectives on dealing with dementia.
"I was walking down the newsroom and I turned to come back and I didn't know where I was.
"It was terrible, I thought to myself keep walking and I walked out of it but I'd never had that before."
That was at the start of last year. Shelley Frew was 58-years-old.
She was working fulltime as a community newspaper editor and had just undergone surgery for stage one ovarian cancer.
Shelley immediately put this strange new frightening episode of forgetfulness down to an aftershock from the treatment she was going through.
"I thought 'What's this? I don't understand this'. I put it aside, it was part of the surgery, part of the drugs. I didn't think much more of it."
But worse was to come. Shelley said the first inkling that something could be really wrong was when the computer system at her work was changed. Suddenly nothing made sense.
"I just sat at my desk and bawled my eyes out because I knew I was stuffed."
Shelley's husband Pete said when Shelley came back from Christchurch after the operation he sensed that something was different.
"Shelley looked totally lost, she didn't know where she was."
Pete thought he might be able to use his computer skills to help her out so they went back to work at the weekend.
"But I could see when I got to the door Shelley was crying and shaking, I thought this isn't right.
"It dawned on me that there was something more to it than just memory loss. I think it was there that I realised there was a real issue."
They spoke to Shelley's oncologist about their concerns over her memory.
"At that stage we still didn't have any inkling of what it was. We thought it was menopause, part of ageing," said Pete.
They were referred to a local surgeon and what followed was a battery of tests - "lumbar punctures, cat scans, you name it".
The matter was then referred to an Auckland neurologist and they were braced for the possibility that it may be some form of dementia.
When the diagnosis came it was a word they weren't ready for, a word that would change both their lives irrevocably.
Shelley had Alzheimer's.
"I hate the word Alzheimer's," she says. "But once you put a name to it there it is."
Shelley is 59 now but she could easily be mistaken for someone 10 or 15 years younger.
She exudes the sort of warmth and gentle energy that makes it entirely believable when she says that her and Pete have never argued in 36 years of marriage.
She speaks in short bursts for fear of losing her thread but she's still fluid and articulate. She says the diagnosis hit her hard.
"I was devastated.
"We'd already been through the grieving process earlier on because dementia had already been mentioned as a possibility.
"But I still got very depressed, I was very angry."
Shelley said it was recommended that she undertake counselling and after only three sessions she started to come to terms with it.
"I wouldn't say I was suicidal but I had bad feelings. I'd promised Pete I wasn't going to do anything to myself.
"It's taken a long time, I still hate that I've got it, but I'm OK with it now. I think the counselling definitely gave me that."
Shelley says once she learned of all the support available she bought into it completely and now she's a huge advocate of the groups.
She attends a book group, a cafe group and a social group.
"The social group, there's a lot of old guys in there. I'm half their age but we have a lot of fun.
"The first time I walked into a support group there was one other guy there. I was so angry, I said 'oh f**k' really loud. He still reminds me of that.
"Funny thing is though no one in the group knows anyone's name. We can't remember names."
The support groups help Shelley fill her week but the hardest days are when she is on her own.
"A day is a long time if you're on your own."
To help fill the gaps she also volunteers at the SPCA shop once a week but says the Alzheimer's has meant she can only process one thing at a time.
"My memory is such that I just about call it one second most of the time."
Shelley says one of the hardest things to adjust to is the fact that she can't drive anymore.
"That was one of the really tough things - giving up my car. I'm reliant on other people, I've had to give up my independence.
"We sold my car in the end, what's the point."
She also has difficulty with spatial relationships.
"I'm always misplacing my coffee. I walk into the wrong room in the house all the time. Putting on clothing it's like a kid, I'm putting things on back to front."
She's also found she's put on weight because she forgets whether she's eaten or not so she eats again.
One thing she is still capable of doing on her own is walking Bolt, her seven-year-old english pointer, twice a day. Bolt is so familiar with their route if she gets confused she knows she can rely on Bolt to get her home.
She has been lost once. A wrong turn saw her end up in Victory Square which she described as scary.
"I live in Tahunanui and I kept asking people where Tahunanui was and no one knew, they were all recent immigrants."
A passerby took her and Bolt home and there's now a GPS attached to the leash.
For now Shelley says she feels pretty stable, "I can still talk", but there's nothing on the scope to slow or reverse the damage.
They read somewhere that coconut oil helps so she tried it but hated the taste.
"There's all sorts of other things that we've tried but, if the medical professionals haven't come up with it, it's not worth taking."
Shelley knows that Pete has had to shoulder a lot of over the past year.
"I see the stress on his face.
"A lot of marriages don't survive. It gets to the stage where you can't take it anymore."
For his part when asked how he has processed it Pete falls silent and lets out a long sigh.
"I keep thinking back to our marriage vows in sickness and in health and that's what I'll do.
"I find it really hard. I find that it consumes pretty much 24/7. Seven is fine but the 24 is … you have to be alert for the whole 24 hours."
Pete says when they go to bed, if Shelley wakes up he starts thinking 'What's she doing? Where's she going?'
"You have to be aware of what's happening, you can't relax. If she's going to the kitchen will she remember where to go back to."
Pete says he has told Shelley she can contact him any time of the day for whatever reason but finds if she doesn't contact him he starts to worry.
"This morning I left work at 7am and I didn't get my first call from Shelley until 10.15am. What's happening in the meantime?"
He says that one of the biggest adjustments for him is that Shelley can only remember one thing at a time.
"I can't say 'do this and then this'. It's got to be 'do this'. Then I have to wait till it's over. Then 'do this'. It's not frustrating, it's just time consuming.
"So throughout the week I've learned what the limitations of Shelley are."
And there's also been a change in the dynamic of their relationship.
"Shelley was the extrovert and I was the introvert and it worked. Now I'm the introvert trying to reach to be the extrovert.
"It kind of works in our existence but it's not where I want to be. I mourn the loss of what Shelley was."
Pete says he hasn't dabbled into support for partners yet but doesn't rule it out. He has started to take time off work though so he has the energy to devote to Shelley.
"It's all right if you're retired because you've got that time, but if you're working you need that extra time as well."
Shelley has asked the question "why me?" plenty of times, but she remains positive.
"I'm not the person that I was and I don't let it get to me."
Pete says it's the uncertainty that really gets him.
"It's kind of scary. Are we going to get another 20 or 30 years or is this going to be some event that suddenly changes things?
"No one could tell us this. There's a lot of diseases you can say that's the end point but this one you can't."
Perhaps the final word belongs to Shelley.
"It is what it is," she says quietly.
Margaret describes Peter as a gifted aircraft engineer with a wonderful sense of humour and she says it was that humour that helped him deal with the affects of Alzheimers. PHOTO: BRADEN FASTIER/ STUFF
Peter Lacy had Alzheimer's for 10 years.
He and wife Margaret moved to Nelson in 1964. Peter set up his own aircraft engineering business.
Margaret says in the early days he was one of the most qualified aircraft engineers in light aircraft in New Zealand.
And a complete workaholic. At one point she said he was responsible for maintaining more than 100 aircraft.
"He was bright, he'd solve problems quickly and he used to feel that responsibility too."
She says Peter also had a very clever, dry sense of humour. A sense of humour he used to lean on heavily when Alzheimer's started to take hold.
"With Alzheimer's people put on a quite good front at the beginning you don't know there is much wrong with them. People wouldn't notice with Peter because of that sense of humour.
"Often with Alzheimer's people lose their word power but he kept his sense of humorous word play right to the end."
Peter Lacy at Tahunanui Beach. PHOTO: SUPPLIED
Margaret says she first noticed something was seriously wrong when they went to the North Island on a trip and Peter wasn't himself. He was easily disoriented.
She says he lost confidence and started losing track of things. He lost ferry tickets as soon as they were given to him and this prompted them to visit the GP.
"The doctor realised what was happening but, of course, I was in denial. It wasn't too long before you're no longer in denial."
Then, at age 74, Peter was visited at home by two CAA colleagues who talked to him in a caring way.
Margaret said they told Peter it was time to put his tools away now and have a deserved rest.
He took their advice and the couple moved to Stoke where it was flatter and there was less traffic.
Margaret says Peter had already stopped driving by then but would ride his bike a lot as it gave him a sense of freedom.
He got lost at first when they shifted but his name and phone number was put on the bike and this helped.
"People used to ring and say he should not ride his bike, but you can't take away a person's freedom. He weaned himself off the bike in the end. "
She says Peter would still go walking three times a day and take his son's dog Eddie who would show him the way home.
One of Peter's great loves was sailing.
The family yacht was a Lambert C10 called Fiesta. He had it built in one of the hangars where he worked.
Margaret says that was his life.
Eventually even yachting became too difficult to carry on with and Fiesta was sold.
"He was proud and wouldn't tell anybody. He still had his persona that he was in command," Margaret says.
"People with Alzheimer's are very vulnerable in the beginning, they start making poor decisions."
Margaret says the fact that Peter had Alzheimer's for 10 years took a lot of their retirement years away.
"As time went on it restricted going out, all he wanted to do is stay at home.
"It robbed us of those years when you are fit to do things."
She says friends used to visit regularly, which was nice, but they suddenly found there was a very limited number of people who visited.
Margaret Lacy with a picture of her late husband Peter. PHOTO: BRADEN FASTIER/ STUFF
Margaret started attending monthly support meetings which she found were great because "we didn't judge each other, other people judge you".
As the disease progressed Margaret says Peter remained in good spirits and kept his sense of humour. But he would still have good and bad days and would get frustrated.
"Äs the disease advances they go back in time. In the last three to four years of his life he'd sit in the his chair and I would say what's wrong Peter and he'd say nothing
"But he was reliving the horrors of the past, of aircraft crashes and having to deal with them.
"He still had lots of knowledge because he'd been doing it all his life."
Peter suffered ischemic attacks which would leave him tired and confused.
"Six months before he passed away we had a hurried visit to A&E as Peter was suffering acute pain and the doctors diagnosed perforated diverticulitis. He was a very sick man after two weeks in hospital he was sent home."
Six months later he had another attack this time the scans showed a mass in the bowel. He was put under hospice care and died on July 25 last year.
In the end Margaret's abiding memory of Peter was a good man, a gentleman and a much-loved husband and father.
Her abiding memory of Alzheimer's was a very cruel disease.