Alzheimer's Disease is a mental illness that robs the sufferer of independent living and it places a burden on the carers. Helen Charalambous told Lindsay Ord how she “lost” her husband to the disease.
Durban - Helen Charalambous, 57, and her husband Steve, 68, were an independent working couple when Alzheimer’s entered their lives. Steve, a carpenter and shopfitter, had his own business and was a respected member of the community.
Helen was an accounts administration manager.
They were loving and active parents and grandparents to their four children and grandchildren.
But Alzheimer’s started, as it usually does, with subtle signs that are often passed off as “normal”.
What was dismissed as Steve’s difficult behaviour and bad business decisions was actually the beginning of the disease.
“Looking back, I realise that Steve started with Alzheimer’s about six years before he was diagnosed in 2010,” says Helen.
“By 2008, he was becoming aggressive when I would disagree with him and his bad business decisions were costing us dearly. He would forget things and when I reminded him, he would say he was not a moron and he did not forget things. I began doubting myself.”
Steve harassed Helen for money for his work contracts.
“I had to take loans and he even sold my diamond ring, assuring me he would get everything back. My father also gave him money, without my knowledge. Finally, he closed the factory as we were so much in debt. We placed the house on the market and moved in with our daughter and son-in-law.”
Helen still didn’t suspect mental illness, thinking he was just a “stubborn Greek man”.
She was working three jobs to keep them afloat and Steve could not understand her stress.
“He did nothing to help, would go off to visit friends and expect me to supply him with money. We moved into our own place and I had to pay the bond. He still wanted marital benefits (something nobody talks about at any support group) but I could not bear him to touch me. I moved into the spare room and slept on a blow-up mattress.”
A trip from Pretoria to Durban to visit Helen’s brother was a turning point. He was restless and difficult and they had to make continuous stops. Helen had grown to despise him and she decided to divorce him.
On the return journey reality struck. Caught in traffic, Steve started to ask what road they were on, where they had been, what area they were in.
He did not remember that they had been to Durban or the familiar roads that lead home.
Back home, a neurologist diagnosed Alzheimer’s.
“The world crashed in on me. The doctor, however, was not much help and berated me for not bringing Steve in sooner. That was my first guilt trip.
“I found a new neurologist and the My Support group via the internet. Once I knew what I was dealing with, my attitude changed and I began to care for him.
“The worst part was having to leave Steve at home while I worked. He was unable to dress and feed himself. He was still driving and would bump the car and lose his way. Eventually I had to lie and say the car had been stolen. He would try to clean the carpets and throw buckets of water on them. He broke door handles and dug up plants in the complex.
“I was upset that he had sunk to this. I sold the house to pay our debts and took the heart-breaking decision to put Steve in a home.
“The first home was a nightmare and the care was appalling. Then I found one where the care was good in that they understand Alzheimer’s and have male carers for men.”
In the past year Steve has deteriorated. His walking is slower, his speech jumbled. He does not know his grandchildren.
He mixes up names and wears nappies.
“The illness has made me tolerate and accept the unchangeable. I have learnt to laugh with Steve and make the most of the time I have with him. I visit him two or three times a week and at the weekend. I make sure he is at family gatherings even if he does not remember what went on.
“He loves to sing and laugh and gives me more hugs and kisses now than previously.
“Before Steve went into the home, I had no time for myself. I did not go out and I neglected myself. I aged 20 years.
“I am content that he is receiving good care and I am continuing with my life. There were many times when I questioned whether putting him in a home was the right thing. I felt guilty when I went out with my friends. But you cannot turn back the clock. I have lost my friend, companion, lover and husband. But I see this as the next phase of my journey with Steve.”
Advice to carers
* After the initial shock, educate yourself on the illness.
* Get support from family, friends and support groups.
* Put your finances in place before your spouse is no longer able to sign.
* Get a power of attorney.
* Work towards acceptance of the illness.
* Get help to relieve you if you are at home with your spouse – go out and relax for a couple of hours.
* Monitor the medication. Patients sometimes need short term relief for a difficult period of time, but not for extended periods
* Laugh with them and avoid conflicts – you can never win an argument with an Alzheimer’s patient.
* Change the subject quickly. They soon forget.
* Acceptance, tolerance, compassion, patience and love.