Joan's Journey with Dementia

This September, it’s Dementia Awareness Month and the daughter of one of our residents, Joan, wishes us to share her story with you. Joan’s mum has dementia and she is being cared for by our team of experts at Macquarie Lodge Aged Care Centre. Here is Joan’s touching personal account of her coming to terms with her parents' dementia, her journey as a carer and eventually seeking help:

Don’t ask me why I didn’t think about the prospect of my parents getting dementia and what impact that would have not only on them but on me.

I was a policy analyst with knowledge of and interest in medical & health issues. I knew the dementia stats.  I knew the signs.  I’d pondered, in a policy way, the strain on carers. 

I wasn’t at first aware that I’d gradually become a carer. You love your parents, you look after them!  

I’d first noticed that Dad sang less, laughed less, became less out-going, started worrying about trivial or unlikely things and increasingly lost skills.  It was gradual.  But mercifully he was unaware of it.

I began choosing only work that fit in with my carer role.  

Early changes in Mum were gradual too. Her amazing intellect & memory started sinking after Dad’s heart attack some years earlier.  She became more negative; more prone to irritation.  She obviously knew her skills were receding.

I eventually closed my business and became a full-time carer for Mum & Dad. 

I loved them both very much; and was blindly determined to look after them myself. Never to put them in a nursing home!  Mum said: “You might have to one day!”  Never, I thought!

Dad proved relatively easy to ‘manage’ until a stroke took him 10 months after I left work.  

Mum looked so frail & vulnerable at his funeral. Her cognitive losses sped up.  At first, as a memory specialist had predicted, only her closest (me!) noticed.  But it was some time before anyone else used the D-word. My grief at her decline was like a slow & deep burn.

But I just assumed I’d keep on being her carer until she died. I guess, like some types of dementia, the strain creeps up on you; and, if you’re throwing yourself into being the best carer you can, you just keep busy doing what you need to do. In my case for 6 years until Mum was 89.

Even when my meagre income support stopped abruptly (due to a lower Assets Test) and my funds dwindled (helping another relative), I was determined I could keep doing it all.  And I did.  Until Mum’s stroke!  By which time I was already exhausted and suffering from hyperthyroidism which raises anxiety and sends the body into over-drive.

There’d been signs that things were getting tougher. She was less tolerant. Less decisive.  Less loving.  She’d forgotten family stories she’d told me, and even insisted I’d got them wrong.

There’d been signs that her physical health was dwindling too. I’d worried about mini-strokes.

Yet for some weird reason, I’d never expected my strong & vibrant Mum to have a big stroke.  It came on the day we were told she’d got a ‘home care’ package but was eligible for high-level care!

The stroke was devastating to her cognition and welfare. Her dementia sped up to a gallop.  For a time, she couldn’t walk without falling.

All this also meant the sort of personal change and adaptation I’d never given much thought to – busy as I was coping with each day as it came.

I still thought I could struggle on looking after her at home. The hospital told me that was impossible.  I assumed they were wrong.  (I was strong, competent, determined and a ‘doer’!  What could go wrong?)  But I was wrong.

My world had changed in an instant. Mum was no longer the person she’d been.  And I wasn’t doing well either.  There was too much happening, too quickly.  I was fatigued, shell-shocked, grief-stricken and increasingly unwell.  I needed time to adapt.  But there was little time and many challenges.  First was finding a good local nursing home.  

I visited several. I wanted a good local one so I could see her every day and be on hand in emergencies.  Someone ‘in the system’ told me this was selfish as the level of care was more important!  I thought both were important and bristled at being patronised – as carers often are.

Luckily, I’d done some ‘homework’ in case Dad might need a nursing home. (So I hadn’t been in total ‘denial’!)  I’d talked to people with relevant experience; and, when walking the dog, asked the family of residents of two local nursing homes I was interested in what they thought.  Both got good reports.

My first choice didn’t have a place when Mum was about to be discharged from hospital.  So there was a short respite period in the smaller one that did.

I kept hoping that Mum might recover to an extent after the stroke.  But she meanwhile needed ‘higher care’. Thankfully a bed became available in my first choice, a local Salvo’s nursing home.

This was at a time of awful stories of neglect in nursing homes, prompting a Royal Commission. But this one was one of the better ones.  A world away from the horror stories!  Though agnostic, I now look back and think: Thank God for the Salvo’s!

I didn’t realise at the time, but picking this nursing home probably ‘saved my sanity’.  Mum’s stroke, another close family member’s crisis and then my beloved dog’s sudden death had made me feel beleaguered.

Pressure to act quickly in securing a nursing home at a time when I already felt stressed saw my hyper-thyroidism ‘bloom’. I lost 16 kilos plus key skills - to the extent I worried I might have dementia!  

And I felt daunted & panicked about navigating government rules and the Aged Care system.  Most of all, I felt profoundly guilty about putting my darling Mum into a nursing home.  By the time I ended up in hospital, I hadn’t even organised it to be paid!  

The nursing home was incredibly patient with me, noting that many carers have health problems after such upheaval. I was touched by this. By the time I was home and seeing Mum every day again, she was in the Dementia Ward.

My skills had returned. I arranged the finances, filled out the forms and gradually started to like people again.

I soon saw why her nursing home got good reviews.  The staff were caring and helpful. They got to know their residents.  They listened and answered your questions.  But I understand not everyone dealing with nursing homes has such a relatively positive experience.  

My Mum still has dementia. I still grieve what she’s lost. She’s had more falls and one of them triggered more complications. BUT: 

• I still love her and see her every day
• she’s getting good care and is as safe as she can be
• I’m coping, even though I know things are getting harder again.

To all carers, particularly those with loved ones with dementia, take care of yourself too!  Don’t wait to ask for help.  If you don’t and you stumble (as even the strongest carer can), you’re no good to your loved one/s!

Both low and high level dementia care is available in The Salvation Army Aged Care Centres across Australia. Our personalised approach to care caters to those requiring extra levels of support at every stage of their journey. For more information on how we can tailor a package suited to your specific needs, please contact our friendly Client Services team on 1300 111 227.