Jan
- admin1356
- Oct 6, 2024
- 4 min read
Updated: Nov 26, 2024
"It's quite daunting, because you don't know the answers."
How long had you noticed changes with Mal up to receiving a diagnosis?
Probably 12 months, all up. We'd noticed a few things that weren't quite right. He'd seen a few doctors, specialists and then went to the Memory Clinic. That's when the diagnosis came in that it was Alzheimer's.
What was the response of the two of you?
Honestly? It was hard to handle at first, although it was also a bit of a relief for Mal actually hearing something about what it was, even though it was difficult to deal with.
What did you do next?
We both took two weeks off work, couldn't cope/focus on work really. There was a lot to think about, a lot to deal with. Hearing the diagnosis and being told it's not going to get any better and it's certainly not going to go away - that's hard.
What were the signs that made you think it needed investigating?
Two things. There was the forgetfulness, but the worst part was forgetting his words. He'd be in the middle of a conversation, and he'd know what he wanted to say, but he would just lose the words, and that is the most frustrating thing for him. You can forget people's names, everyone does that, but trying to get a message across, say at work, and you can't quite find the right words, that's hard.
How has work been for Mal since the diagnosis, has anything changed?
It has recently. Mal chose to tell his boss straight away, and he was really supportive. The boss immediately spoke to the rest of the team, so everyone knew what was going on. They've made some changes, particularly around the computer stuff that Mal was beginning to struggle with, computers are changing all the time, and he found all the updates hard to deal with.
What about you, as his partner, how have you settled back into work, you work in the same hospital as Mal?
Yeah, I do. I'm still struggling a bit at work. Those two weeks we took off were very emotional. There were so many questions, for both of us. And Mal would go through stages of feeling quite down and depressed. He shut himself away a little bit, but slowly, he got his motivation back, but there are still good days and bad days.
Going back to the diagnosis, what was it like for you in those initial days?
It was quite......not scary, but I was worried about what was going to happen. If he has to stop work what will happen with the house, can I keep up the mortgage? Will we have to sell? Do we need something that will require less maintenance?
You've put a lot of work into the house, particularly the garden?
Yeah, we love going to Kings and buying plants, it's extremely rewarding. But there's too much maintenance now for Mal. He can't do as much as he used to and it's hard on me as well. With the dementia, his cognitive skills are not the same. We bought a new water blaster and just trying to put that together was a challenge for us, same with a weed eater.
How do you get around issues like that?
I have to remind him that everything I know about gardening, landscaping, and construction, I have learned from him, and he is going to have to let me take the lead a lot more - and I'm going to have to learn to be a lot more patient.
What changes have you noticed in Mal since the diagnosis?
He has become even more caring, he's always been one of those people who thinks of others , but even more so now, and it's so nice to see.
You both work in health. What support is there for you as a carer and Mal living with younger onset dementia?
It’s early days and I am still trying to find time to look into what support is available. As well as taking on more responsibility to support us both, I have a busy job. We leave home early in the morning, get home late and then I am too tired to look at the computer, and see what else there is. We have big decisions to make, and it is all consuming.
What is your greatest need?
I really need a bit of help around the home. I try to keep on top of everything but It’s a lot for just me on top of caring for Mal.
What services would help Mal and your situation now?
As a carer of someone with Young Onset Dementia the most difficult thing is continuing to work whilst learning and trying to understand the diagnosis. It’s impacting on our lives and only going to get harder.
There is support available for older people with dementia, especially those who are retired, but for younger people who still have families, mortgages and work commitments, there’s a real lack of support.
Age-appropriate support facilities would be ideal. Needs for younger people with dementia are vastly different to older people with dementia.
YOUR DONATION will HELP US HELP OURSELVES.
Getting help needed is a living challenge for the group behind Young Onset Dementia Collective.
If we wait for Government, Ministry of Health or under-funded agencies, it will be too little too late for our people.
For many the situation is dire. Help is needed NOW so we made a collective conscious decision to do everything we can to help ourselves. Spouses, partners, carers of people living with younger onset dementia have real life reasons driving combined determination.
Help us keep minds engaged and spirits lifted for those affected. Plus support carers in their financial, mental and wellbeing journey.
