Living with Alzheimer's disease

This is the third article in a series by the Starts at 60 community on Alzheimer’s disease and dementia. Other articles in this series include: ‘Behind the laughter and the tears‘ and ‘Living with dementia‘.

My mother passed away 11 years ago. She lived with Alzheimer’s disease but actually died from a lung infection due to her emphysema.

Her mental decline was slow, so it did take a while to realise she was not her usual self. Once this debilitating disease took hold some things she did were really scary, some were dangerous and others were hilarious.

She refused to move in with any of us and lived alone in our family home. She was reclusive and suffered from agoraphobia. This was possibly a blessing as one hears about patients wandering off from their homes. She was never abusive as I’ve heard some become.

My sister and I took her for the testing. We sat with her as she could not say what season it was, what month is was, what year it was. Yet she could count back from 100 by sevens and spell words backwards — something my sister and I could not do and thought maybe it was us who had had it, not our mother.

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Once her declining mental capacity was determined we visited her at least every second day. My sister was the main carer as it was very difficult for me to travel the distance as I also had work commitments. I did see her about twice a week. My sister was the one who did her shopping and sat with her mostly. Our brother was nowhere to be seen.

I remember the phone calls from her — 2am and we would be woken by the ringing. “I can’t find some paper work,” she would say; 3am she would ring back and say, “The fridge is making a terrible noise”.

She became obsessed about certain things. The paperwork is one example, she had no idea of time and would ring either my sister or I and we would tell her to ring our brother, but she never did.

She must have spent hours sitting by that fridge waiting for it to make a noise.

I asked her what was the worst thing that could happen if the fridge broke down? We would just go get her a new one and replace the food. She gave up her nocturnal phone calls to us about that, but did dial 000 and told the ambulance, much to our horror.

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She had no idea of time so continued ringing us in the wee small hours.

There was an obsession about rain getting under the tiles in her roof. Our family home was built in the early 1920s and had a very high ceiling. In the middle of the night she got a ladder and went up into the manhole to check. She fell when coming down and broke her hip, resulting in a hip replacement. She survived this very well for a woman in her 80s. We removed all ladders from the house after that.

Hospital stays resulted with her ending up in some unsuspecting person’s bed, instead of her own.

Our Mum didn’t understand answering machines. She told my sister that I was very rude as I just told her I couldn’t take her call and hung up. My sister explained to her that she should leave a message. Her message was beautiful. She gave her full name, address and phone number and asked if someone could get me to ring her.

Mum became a danger to herself. I went to visit her one day and she answered the door with “Thank goodness you are here — I am having trouble lighting the stove”. The kitchen was filled with gas and all the burners were going full pelt and none were lit. You would only have to light a match in that room and the whole house would have exploded.

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My poor sister got so frustrated with her as she could never understand how to use her puffer, no matter how many times she was shown.

She used to say “Don’t you EVER put me in a nursing home”. In the end she got a lung infection and went to hospital. The doctor there told my sister and me it was touch and go and did we want her to be revived if she passed away.

She got better.

The doctor said to her that she really could no longer look after herself so what did she want to do? She opted for a nursing home.

We finally got our brother to go visit her in the home. She was strapped into a chair with oxygen and he sat next to her. She said to him, “You look a lot like my son”. I would like to think it was a reprimand, but who knows.

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She asked us to bring her some needles and wool to knit. My mother was a wonderful neat knitter. Sadly she forgot how to do it, so every time my sister and I went to see her we would do a bit more and she was none the wiser.

She and another woman who was on oxygen were planning their escape. They were going to slide down under their restraints and catch the bus home. She only spent two weeks in the nursing home before she passed away from another lung infection.

The impact Mum’s decline had on my sister was that it left her exhausted as she also had a job and family. As I didn’t have as much close personal contact during that time the impact wasn’t so great for me, although I did at times think I was neglecting my own family.

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