A lifealtering loss
Dealing with dementia
Iwas 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 she and Pete have never argued in 36 years of marriage.
She says the diagnosis hit her hard. ‘‘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.
‘‘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.
Shelley says one of the hardest things to adjust to is the fact that she can’t drive any more.
‘‘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.’’
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.
Shelley knows that Pete has had to shoulder a lot 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 any more.’’
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.’’
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.
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.
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?
Perhaps the final word belongs to Shelley. ‘‘It is what it is,’’ she says quietly.
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.’’
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 were 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.
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 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.
‘‘As 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 of a very cruel disease.