Jason
- admin1356
- Oct 9, 2024
- 5 min read
Updated: Nov 26, 2024
"I try to be as supportive as I can, lift her up when she is overwhelmed. I love her."
Your diagnosis process has been long and difficult, hasn't it?
Certainly, that's the case for Janine. With her being a scientist, she likes to have answers to things. So, that's been frustrating for her, having struggled to get a diagnosis. And, of course, she has insisted on every test that can be done to try and find some answers.
And when she got those answers, what happened?
We saw that the evidence was there in the scans, it was also there in the cognitive abilities. But pinpointing what exactly is causing it has been challenging for Janine. But, at the end of the day it's there and she manages as best she can. Hopefully someday we will find out what is causing the problem.
What was it like once you understood what kind of path you were heading down?
I had to evaluate how we're going to live our lives going forward. I will have to step up and be there to support Janine every way I can.
How?
Learn to be patient and understanding, allow her to get her thoughts together, because she can get overwhelmed when there is a lot going on. I need to be there to help relieve the stress, assist more with what she has to deal with, so it is more manageable for her.
Tell us about the financial pressure, this is the time in your lives when you are supposed to be earning good money, maybe tucking some away for retirement, the pressure is on you a lot sooner than it would have been, isn't it?
Yes, especially for Janine. I am quite flexible with work, so if I need to take time off to be with her, help her out, that's OK, I can make the time up.
That’s not the case for Janine though?
She had to step down from a senior role, which meant a reduction in salary, so that was extremely hard for her. She is, rightly, enormously proud of where she had got to in her work as a senior scientist, it hasn't been easy for her at all.
There's a lot of expense involved around all the testing too.
Yes, thankfully Janine has medical insurance, which helped to some degree. But being someone who wants, and is used to getting, answers, she has undertaken every test she possibly can, a lot of that (expense) has come from her own pocket. But having said that, we are coping financially.
How are you both doing on a daily basis, we imagine you have both had to adapt your way of living?
Yes, for sure. Janine has her checklist so we go through that. I help where I can, and then if she's running a little late for work, she can get stressed and confused, so I take over the morning tasks and leave her to concentrate on getting out of the door.
She's such a high achiever and she puts more pressure on herself, so is the frustration and stress you see now a result of her impairment. Is that new or is that just Janine?
To some degree it's just Janine. She likes to do everything the best she can, and that has probably made things a bit more difficult, but she is learning to slow down because she was always like a bull out of a gate.
How have your expectations changed for your lives moving forward?
Well, at this stage of the life, our focus was really just making mortgage payments and getting it paid off. So we are working hard to save towards the sort of retirement we envisioned, which was, once we get to retirement, we'll cash in Kiwisaver, and travel the world. But Janine's diagnosis means we have to re-evaluate everything. We’ve had to face that things might have to change now. We imagined we'd stay healthy and see ourselves through to retirement and all the things we wanted to do at that time. But now we may have to look at bringing those things forward because we don't know how long Janine's going to be able to travel. So, we're focussing less on getting rid of the mortgage and more on putting some time towards things we had planned in retirement, so that we can enjoy doing things that Janine wants to do in life, while she can.
What is most upsetting for you?
Just seeing how hard it is for her. It's difficult to see her getting upset over the challenges she's facing, and the impact on work and day to day life. I try to be as supportive as I can, lift her up when she is overwhelmed. I love her. I hurt when she hurts. I often feel helpless and want her to tell me what I can do to help.
Have you both considered a time when Janine can no longer work? We know the time may come. We try to take things day by day and just keep re-evaluating what she can do and find something that fits to keep her busy, active, happy, and feeling like she's still contributing to society and helping people in any way she can. That's really important to her.
Despite her condition Janine is very capable. What do you put that down to?
I think that's her role as a senior scientist directing people. It’s part of her job. She's had to give talks on innovative science. The last one she did was on something related to Covid. But she probably wouldn't be able to do that anymore now. She held a senior position and is very proud of what she's achieved in her working career. To have that being taken away from her has been difficult to accept.
What’s important for Janine?
Creating awareness and understanding is really important to her as a scientist, and as a person living with cognitive impairment. Facing challenges and learning more about herself and helping others in the same situation. She enjoys making connections and building a network with people who are in a similar situation. At some stage, when she can no longer continue in her current employment, our hope is for plenty of opportunities going forward. She loves being useful. That’s important to her.
Can we talk a little bit about your sister Kim who has dementia?
Yes, a couple of years after Janine initially started to show symptoms, we did start to notice cognitive change with Kim and her ability to focus on, and follow conversation. She eventually was diagnosed with Alzheimer’s which came as quite a shock to the entire family. It’s good we are close (family), and that Janine and Kim can be supportive of one another. Mike (Kim’s husband) and I can relate and be more understanding since we’re both dealing with similar challenges with our partners.
How important is that relationship with your brother-in-law now? It’s definitely more important now, and as things get tougher. We can talk to one another as we’re in a similar situation. We’re more understanding, and can relate, and that helps relieve the stress.
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