Carers face a challenging task, and outside support is essential. Ralph Skinner, 65, looks after his wife Kath full-time in their Botany home, and today he shares his story with us.
“My wife Kath has had vascular dementia for 11 years – but for three of those years we didn’t realise she had it. She was speaking normally and everything.
But it was on the way back from a holiday to the UK that we realised something wasn’t right.
Kath, who’s 72 now, was getting fidgety and wanted to get off the plane. It seemed like she had no comprehension of where she was.
When we got home I spoke about it with my son Matthew (who’s now 33), and we decided to see a doctor. After being dismissed by one GP we went to see another doctor in Maroubra Junction, who was wonderful.
Seeing her got the ball rolling. She ran some tests, ordered an MRI scan, and put us in touch with a professor of ageing. She explained what our goals were.
In many ways Kath seemed OK, but there were underlying factors. She didn’t know what a telephone was for, for example.
Changes afoot
The doctor gave her medication to help her, and as she started to deteriorate I applied for voluntary redundancy (VR) from my job at the airport, where I worked as a supervisor and coordinator in customer service.
Soon, I was granted VR and became Kath’s full-time carer.
Vascular dementia is the broad term for dementia associated with problems of circulation of blood to the brain. We could see on the scans that there were little black pin-pricks on the left hemisphere of her brain.
These pinheads were the places where her brain was already dead. And because the blood supply was not there anymore, her brain would die slowly.
It became increasingly tough.
Kath started to become verbally abusive and would yell “Who are you?!” at me.
She then entered what they call the sundowning stage, which is a symptom of the disease where people get restless and start going walkabout later in the day. So we ordered a metal identification bracelet.
I had the support of Matthew and neighbours who helped look for her on those days she went missing.
After about six months of this, she got to the stage where she didn’t walk long distances anymore, and became more introverted.
Not the person she used to be
Now she doesn’t talk much at all – she’s at about the level of a four or five year old. She used to register the TV, but not anymore – although she does seem to like the music being left on.
She’s incontinent now and has to be dressed, fed, and showered – but she does understand kindness and responds when we tickle her and so on.
She sits in her chair a lot – and they were able to access a ‘water chair’ which helps her avoid pressure sores, as well as an inflatable mattress bed.
I take her over to the doctor and down to the park, and make sure she enjoys some sunshine.
I found it alright at first, but it started to wear me down because I’d given up work and that was hard.
But Kath doesn’t choose to be the way she is. It’s not her fault.
Respite help needed
I was getting a bit run-down and tired though, so I looked into respite options. I contacted a day centre for people with dementia which was attached to a hospital.
It was helpful for a while – until a new manager came on board and didn’t seem to understand Kath’s needs. She kept advising me to put Kath in a nursing home – and none of the GPs or other health professionals agreed with this assessment.
It was very stressful, and I ended up pulling Kath out of there.
So it was back to the drawing board.
Soon, after some online searching, I stumbled across South Eastern Community Connect, and called the number.
I spoke to Irene, one of the workers there, and although the offices were about to close down for Christmas, she said to me she’d contact me as soon as they reopened on the 8th January 2018 – and she kept to her word.
On the 8th, Irene called and immediately booked me in for an assessment.
After some bad experiences in the past, I was impressed by Irene’s gentle nature and lovely calm voice.
She came across as so nice and honest that I didn’t bother to ring anyone else.
So in January she came over to our home with another lady and they filled out all the necessary forms for flexible respite care.
She lined me up with Angela Castillo from SECC’s respite services team, and she started coming to spend time with Kath on Tuesdays and Fridays.
Meeting Angela
Angela is from Ecuador and we get on really well. Irene tries to match carers’ personalities up with the families, and it’s been a really good match.
Every Tuesday and Friday I feed Kath breakfast then disappear for a few hours to go to my appointments and get things done that I normally can’t do very easily.
I might go to Eastgardens or the rock pools.
I couldn’t be happier with the service, and the things it’s enabled me to do.
It’s saved my sanity.
I can go out twice a week knowing someone trustworthy is here with Kath, and it gives me a sense of routine and structure.
My aim is to keep Kath at home as long as I possibly can, and help prevent her from catching pneumonia, which can happen easily to dementia sufferers.
Luckily she’s still eating alright.
But this experience has meant my life has completely changed.
Tough times
I’ve bordered on depression at times because my lifestyle has changed completely, as has my relationship with Kath.
Sometimes when I’d see other couples holding hands it was hard.
I knew that couldn’t be us anymore.
But I’ve gotten over it with time. Time healed me, and I came to accept our situation.
I don’t want Kath to go into a nursing home. There’s no better care than the care that comes from a loving spouse or family member, and I want to look after her here as long as possible.”
If you think perhaps you or someone you know would benefit from our flexible respite care options, give Irene a call today on 02 8338 8506.