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Caring for someone with dementia

In 2024, it is estimated that more than 421,000 Australians are living with a form of dementia, and that there are more than 1.6 million people in Australia involved in the care of someone living with dementia.” Dementia Australia

 

Di, the Director of Exceptional Care for You, has walked a heart-breaking journey, caring for her beloved Mum through the throes of dementia until her passing. "As her dementia progressed, witnessing her mental state decline was truly heartbreaking," Di reflects softly. She remembers her Mum saying: 'If I ever get like that, just kill me.' Those words echoed in her mind daily, especially during visits to her Mum, and intensified when the transition to full-time care became necessary.


Do you think it is dementia?


Dementia can happen to anybody, and as we age the risks increase. There is often a number of conditions that produce symptoms of dementia and will have family and friends asking the question, is it Dementia?

 

This was the question that came up when Di, a registered Nurse spoke to her siblings.  “Our Mum was a very stoic woman who did her very best to hide what was happening.”



Signs of dementia:

For Di’s Mum signs included:


  • Explanations or finding excuses for a situation

  • Unexplained accidents, like the kitchen was flooded or something was lost or ‘stolen’

  • Ability to carry out familiar tasks such as working her sewing machine and saying she couldn’t cook meat and 3 veg.

  • Loss of memory of words and objects

  • Forgetting things that happened that day or week


Seeing someone with memory loss is devastating. “I called in each night on the way home from work to check on Mum and Dad. One night Dad called me over and said to me can you help your mum she can’t cook steak anymore, then she couldn’t work her sewing machine any more.  Mum had cooked meat and 3 veg every night for Dad for nearly 60 years and had sewn hundreds of dresses, costumes and bridal party dresses over the years.”





“It became more apparent that we had to come to terms with the fact she had dementia.” It’s important to keep in mind that everyone is different, so we strongly advice to seek medical advice about a specific case.


The stages of dementia that leads to change

Caring for someone with dementia can be rewarding. It can also be challenging, life-changing and stressful.

 

For Di, the decision was a tender one. After over 50 years, her Mum and Dad made the heartfelt choice to sell their cherished home and downsize. While her Mum hesitated, her Dad, with a loving concern for her well-being, felt it was necessary. He wanted to ensure that if he were to pass first, Mum would be secure and capable of managing their new home.

 

Packing and shifting threw Di’s Mum in what she would call a “flat spin”. She spent a lot of time crying, raging at anyone who would listen, and lost the spring she had always had in her step – a spark that never quite returned. 

 

Loss of independence and devastating loss

Shortly after Di’s Mum had an accident while driving, her Dad faced the agonising decision that she should no longer drive. The loss of her independence struck her harder than anyone could fathom.

 

Then, Di's Dad received the devastating diagnosis of untreatable cancer and passed away just 8 weeks later. “Mum found herself unable to cope with this profound loss; her heart shattered, and she slipped into a state of delirium from which she never emerged.”


Care Options – When should someone with dementia go into care?

Making the decision to find an alternative to caring for someone with dementia at home can be one of the most difficult decisions families and carers will make.

 

For Di, the journey to care for her Mum at home was filled with challenges. Despite her best efforts, her Mum struggled with sleeping alone, grew increasingly paranoid, and often became disoriented and confused. She adamantly refused the idea of entering any care facility, making it difficult to pursue assessments that might suggest otherwise.

On weekends, Di brought her Mum to her own house for a sleepover. In an effort to bring purpose and familiarity to her day, Di assigned her tasks like peeling potatoes, setting the table, and folding laundry—activities she had done her entire life.

However, the night brought restlessness; her Mum became deeply confused, unaware of her surroundings, and even mistook Di for a stranger. In the early hours, Di found her Mum on the verge of falling down the stairs, a moment that made it painfully clear that living with her at home was no longer viable.

 

Di knew she needed full-time care however her Aged Care Funding wasn’t fully available. Di could not give up work as a single mum and neither could her siblings, and had to wait for a crisis to get her into care.


Telling the hospital what had to happen

"Mum had a fall at home one night, a rare occurrence when she was alone. My sister discovered her on the floor the next morning, prompting a trip to the hospital. I received a call during the night, as Mum grew increasingly agitated in the emergency department's short-stay unit. I rushed to her side and spent hours comforting her, but she remained disoriented and unrealistic about her abilities.

The next morning, as I returned home, I received a shocking call from the doctor stating Mum would be discharged. I couldn't believe it. I explained to the doctor that Mum was confused, disoriented, and posed a danger to herself. The doctor insisted she seemed fine during the examination, citing details Mum had shared. However, these accounts were not accurate, prompting me to urge the doctor to delve deeper. After further evaluation, the doctor acknowledged Mum's confusion and agreed to admit her for further care."


Di’s sister went in to sit with Mum until she was transferred to the ward.  In the elevator on the way to the ward, Mum had the first of many psychotic episodes and during the admission multiple unexplained unconscious episodes, all related to her delirium.

 

Her final living place – dementia care unit

Di’s Mum was transferred to an aged care facility, a locked dementia unit after spending many weeks in the psychiatric geriatric unit.  “I call it her final living place because if I called it her home she would haunt me every night.  Mum hated every minute of being there and let us know every day when we would visit.  Mum was there until she passed away just over a year later.”


Knowing when it is time and your choices

During the first lockdown, Di was allowed to visit her Mum once a fortnight to keep an eye on her.  “It was heartbreaking, she had lived her whole life for her family and now when she needed them the most she could not see them. One night I had dinner with her and she seemed a little more lucid than she had been, she had suffered a terrible fall earlier in the week.  She said to me “I think I’m ready to die now Dianne.”  At that point, I knew she had given up.  She had suffered two recent falls and more unconscious episodes.  I spoke to my siblings and we made the decision it was time to cease anything other than pain relief for Mum.

 

My sister visited the next morning and Mum was very tired and didn’t want to get out of bed.  Mum never got out of bed again, we were allowed to sit with her for a week while she slowly left us peacefully, pain-free at a time when she was ready.”

 

Losing someone with Dementia

“I thought that I had already grieved for my Mum as we had lost the woman who was my Mum years earlier.  I was devastated and found it bizarre as I felt like I was grieving a woman I didn’t know, the one who constantly asked where my Dad was, the one who stole other residents’ handbags and the one who would hit people with her hair brush. It took several months to remember my mum in her “good days” and then I grieved again.


I wrote and delivered Mum’s eulogy and I was very sure that it contained stories about our real mum, the one dementia stole from us.  Dementia was only a small part of her life, but it manages to change your memories of the person forever.”


Seeking Support for Dementia

If you or anyone you know needs support, Dementia Australia provides free resources and counselling.

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