Jo
- admin1356
- Oct 2, 2024
- 4 min read
"You feel you are doing everything you can, but it’s never enough."
People ask me what's the worst thing for me with Mark's illness. It's the lack of sleep, and loneliness, the grief of loss and support of someone to talk to. That person who you used to share your life with, your worries and challenges of normal day living and future dreams.
So, you are shutting down your own needs because it is hard enough looking after the person you care for, the challenges become insurmountable. It’s a solitary life, which is so hard because we were so used to doing things together as equals.
From what I can gather, a lot of other partners/carers sleep in separate rooms. I can't do that; I need to know if he's wandered off or is hallucinating. At the moment the hallucinations are not scary. The funny thing is he has great sleep, talking, laughing, telling jokes, chatting away. It's good to hear it, as he is so quiet and becoming sleepier during the day.
The whole process has been going on for around seven years now. If we look back, there was a loss of smell and nightmares thrashing about in his sleep. Mark was originally diagnosed with Parkinsonism by our GP which turned out to be Parkinson’s with Lewy Body Dementia. We had to wait another six months to see a specialist as , privately or publicly, there is a shortage of Neurologists.
Within a week of seeing the Neurologist we had the report, and as well as the initial diagnosis of Parkinson's we discovered Mark also had Lewy Body Dementia.
The specialist told us to get a power of attorney and get our affairs in order. We both cried and I argued with the Neurologist and said we are here for Parkinsons.
Mark is limited to what drugs he can take to control his Parkinson as they can cause hallucinations with his Lewy Body Dementia. We paid for two specialists as I wanted a second opinion. We were told we also had to be in the hospital system, and saw a third Neurologist who confirmed the diagnosis. There was not much they could do to help.
The ability to drive was important to Mark and I didn’t want to be the one to take it away from him, so we got an independent driver assessment (it cost approx. $700) and, of course, he failed. It means your licence is taken off you straight away. That was when things really changed. He was reliant on me as the driver, we were living out at Bethell’s in Auckland. Public transport wasn’t an option.
We ended up selling and downsizing and were coping until mortgage rates doubled and COVID arrived. I also work in real estate; it was a noticeably quiet time for us. Mark loved Bethell's; it was a lifestyle home, and we had the property for over 17 years but the advice from family was we could no longer manage the land and Mark would be isolated out there.
We're looking at having to downsize again, maybe even a move out of Auckland, which would be a bitter blow as it’s where most of Mark's family live.
I know that he can be a bit vague and probably has more bad than good days, but he is too young and too aware for us to consider respite care.
It always seems to come back to finances. When you're in your 50s you think you might have another 10 years or so together to pay off the mortgage, but when you suddenly end up in a position where that is obviously not going to happen......
And it's always on your mind, you feel you are doing everything you can, but it’s never enough.
People have asked me how Mark's diagnosis has affected me? If I'm being honest, I have to admit to some anger and resentment, and sadness. But then I think, to whom ? It's just the way life has gone; no-one asks to get Lewy Body or Parkinson's. We have had such kindness from friends who see past Mark dozing off and appreciate his dry wit. They include us in social outings, love Mark and try to help us.
It would be great to have age-appropriate respite care for Mark and other people with younger onset dementia. Mark is still aware and physically able; I always look for what will add value to his quality of life and do my best to create environments and experiences that benefit his wellbeing.
A time has come where I can’t leave Mark on his own and it is not fair to leave him in the car or drag him to meetings as I have to work. It is difficult asking for help, but I have had to ask his family for support as his quality of life is compromised as I try to work to pay the mortgage, or we could be homeless.
The stress, on all levels, is high. I have great friends and support from our Men’s Dementia Group (wives/partners) who were the driving force behind YODA, the only Auckland based day programme from 10.00am to 3.00pm for 1 day a week.
To make a difference we all need more age-appropriate care at least 5 days a week, with respite care available as part of the service. Most if not all of limited care available is for those with major issues and the elderly. If there was something that was more suited to the needs of Mark, then we maybe wouldn't have to move, maybe I could continue to work knowing he was in an appropriate nurturing environment.
I hope by sharing our story this encourages people to see the need for help for people with dementia and their partners-caregivers .
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.
