Shona
- admin1356
- Oct 8, 2024
- 3 min read
Updated: Nov 26, 2024
"They need to have the best life they can, for as long as they can."
We all know that once people with Dementia go into residential care environment they can change. Lights go out, so the aim is to keep Kevin in a home environment for as long as possible.
But, and here's the big problem, I don't think the impact on carers is really understood. in a perfect world there would be five days a week care so we could carry on working. I often think the caregivers can be overlooked in favour of the patient; it needs to be more of a two-pronged approach.
The change in Kevin was first noticed, maybe five years ago, so it's probably fair to say it started before then. We (the family) had a sense of what may be coming but for Kevin it was a massive shock and meant a big adjustment in his life.
We got the Alzheimer’s diagnosis in 2022, and I was working full-time until 2023, when it got too much for me.
So now I work from home on a casual contract basis.
We've got some help in place. Kevin goes to Dementia HB two days a week and works at a local gym the other three, that's really helpful as it gives me time to get things done. It also helps me stay in a good ‘space’ for the sake of my own wellbeing. You have to be in one to keep all the plates spinning.
There are also semi-regular meetings with groups of carers and clients where we live in the Hawkes Bay, so, if I have a question, perhaps about him driving or something similar, I know there's somewhere I can go to bounce it off people who have already reached that stage and more.
It also helps as you can see what is considered normal, and what is not, you can pick up some strategies and find out what it is you should be concerned about.
If you ask me about a wish list, and I have thought about it, as I'm sure most carers have, top of my list would be regular respite.
A time when I just don't have to think about it. Overnight, or weekends would be preferable in my case, but not every case is the same. But I think some sort of respite would certainly help avoid a situation where issues bank up.
The further you get into Dementia the more the situation changes. You stop having a relationship and become a carer, which is sad.
We might be luckier than most in that if we reach that 'worst-case scenario' where we were relying on our Superannuation to survive, we could still put food on the table.
But, at the moment I'm still at work, and that's so important for me, as it gives me self-respect, and having financial resources means there is one less thing to worry about at
the moment.
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.
