The Cruelty of Dementia.

My mother passed away yesterday, finally losing a battle against dementia that lasted more than 14 years.

Sydney October 2015

My mother has had dementia from when she was in her sixties. As her brain slowly and steadily failed her, I watched as she became lost in an increasingly unfamiliar world.

In the very, very early stages, I would wonder why she started to forget putting some ingredients in her cooking. Or why she would almost daily buy a plastic flower from the $2 shop. One day she drove to the shopping centre, then hitch-hiked home saying she couldn’t find the car. We found the car after a long search. Then I started to get phone calls at work from the place where she liked to eat lunch, with the owner saying she wouldn’t leave or had forgotten her purse or house keys. The owner would let my mum peel the peas for the dinner service until someone could collect her.

Things progressed very slowly until one day, a shop 3 kilometres from home called to say she was found tired and dehydrated, wandering the streets on a hot Summer’s day around noon. They found my phone number in her purse.

We were finally able to place her into a dementia day care facility, with a private nurse to collect her each day and supervise her until one of us got home. On rotation, my siblings and I all took it in turns to sleep at her house so she was never alone at any time. Despite this, she became lost in her own home. Urine puddles would appear in the carpet. Tablets she had hidden in her mouth for half an hour would appear randomly around the house. She’d often wake in the middle of the night and just start ripping things up. Other times she would dance and sing like she was a child again. Smells would alert me to rotting food hidden behind furniture – return of hoarding behaviour from when she was a young child in an occupied homeland in the era of World War Two. Her thoughts and speech started to deteriorate. Her incontinence worsened. She became unable to shower herself, brush her teeth or dress herself. I regularly browsed through home care aid brochures and websites. I changed jobs to be closer to her home in the event of an emergency. For as long as possible we wanted to keep her in her own home.

Then the paranoid delusions started and she would become aggressive. The threats against my life were distressing, but deep down I knew them to be harmless. Medications helped for a while but then the apathy and lethargy episodes started. Despite supervision, she would fall repeatedly, first breaking a wrist, then tearing tendons in her arms, and then sustaining a bleed in her brain. Conservative management each time. The medical specialist said she might live another 2 years.

Several months later and she slowly lost more and more of her mobility and could no longer feed herself. Yet other muscles continued to work well. She started biting and hitting her carers – one needing hospital treatment. Soon after, I took her to day care one day and I was asked into the office. Without notice or room for discussion, they told me to collect her at the usual time that day and then not bring her back. That was on her birthday. I had to take 3 weeks leave from work immediately to look after her at home until we found a vacancy at a nursing home.

That was 4 years ago.

After a hiatus because of work, I took up regular photography again, as a diversion. I’d never taken dedicated street photographs before then.

I have visited her almost daily after work at the nursing home since then, because I didn’t want her to feel alone, or more likely it made me feel better to think that she wasn’t alone, because in her mind she probably was alone. Did you know that the institutionalised elderly become more confused and agitated at night? The screams and yelling in a nursing home can be deafening. Most weeknights I didn’t get home till well after 8pm. She quickly became bed-bound, unable to move, unable to even scratch herself. Her arms and legs started wasting away. She had contractions in her hands, arms, neck and legs. She lost 15 kgs weight over 12 months. She was probably the only resident in the nursing home with all her own teeth – yet these were now all decaying and her gums swollen and bleeding to the touch. Her jaw was chronically dislocated and arthritic and she was on a special soft diet. She had a pressure sore which fortunately healed. Eye infections were a common occurrence. She survived several gastroenteritis and influenza outbreaks in the nursing home.

She started to eat significantly less several weeks ago, then started to refuse occasional feeds. Her bowel activity was decreasing and she often lost consciousness for hours at a time. I went to visit her two weekends ago and she had projectile green bilious vomitting. We took her to hospital where she was diagnosed with bowel obstruction. She may even have aspirated some of the vomit. She was dehydrated with failing kidneys.

There was no quality of life now although there is always quality of care. Appreciating the gravity of the situation, there was only one choice to be made. We had her placed onto regular morphine and sedation. The end thankfully came one week later. She was 76 years young.

This is the cruelty of Dementia, from my personal experience. It is an all consuming disease that doesn’t just lead to death. It slowly destroys life. It was her disease but it affected the entire family.

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Dementia incidence and prevalence is increasing in Australia and world-wide.

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This will be my last post for a while.