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Amongst other things, this is a love story.... the theme changes occasionally... this year it is fitness and learning to love yourself.

8 April 2015

Freedom from Fear #atozchallenge Care for the Carers

Two days after her 73rd birthday my Mum took her final breath. She had Alzheimers and Motor neurone disease. For her final 3 months I was her main carer. A privilege I am grateful for and will cherish forever. This years #atozchallenge theme will focus on being a carer / care-giver.

Remember to care for the carers.  

Freedom from Fear

One of the early signs that Mum had a progressive disease (or two) was the increase in her fear of almost everything.  Fear of the dark, fear of driving at night, fear of falling. She was also fearless.  

One night she forgot I was outside taking clothes off the line. When she heard the back door open, she didn't try to wake Dad but got up to face the burglar. 

Her legs were weak and she would forget she couldn't get up or walk safely on her own. I heard movement in the lounge, dropped the washing on the floor and almost ran into her in the kitchen. I never expected her to have got so far, we both got a fright.  

Instantly both relieved, me to see she was safe and her to see a friendly face. From that night I began to announce - 'Hi Mum it's just me, Ida' as I came in the back door - or any other door within her earshot. I told her to pretend she was sleeping if she heard a 'burglar' again. Better they rob the house than she falls over in her pursuit of them. 

It's easy to get frustrated when dealing with weak, elderly, frail, forgetful and fearful people, particularly when it's your parents, we tend to expect more from them. 
'You know how to do this or that.  You're doing it just annoy me. Why don't you trust me I'm your daughter, I would never hurt you. Why won't you just listen?'  

Stop. If they could please us they would. Dementia takes away the ability to understand simple cues or commands. 

They forget they can't do things the way they used to. Logic makes no sense. Just because you tell them to call you if they need help doesn't mean they'll remember to. Their own homes become unfamiliar territory. 

Unlike children they are not getting smarter everyday.

Everything takes more time, they need constant reassurance that everyone is ok and they are safe... Mum would rather suffer in silence than ask for anything from anyone (except maybe her husband.) 

She was also good at faking she knew what was happening right up until the moment she had to perform the task. 

It is important to always remember that  it's the disease not the person making life difficult for everyone.  

Carers need to be forgiving of the people they are caring for as well as themselves.  

If you are an able minded and able bodied person please be a little forgiving of carers too.  

If a carer lashes out at you they have likely had a few frustrations throughout the day/night that need an outlet. 

If you don't have a sympathetic ear you might just end up with an earful. 


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 The A to Z challenge here.


  1. I have absolutely zero patience although I know I should understand. I am not a very good carer at all.

    1. The fact that you know and are willing to admit that Jo probably makes you more helpful than some.

  2. Wow, Ida. I just wrote the same thing about the cared for and the care's frustrations in a draft of my upcoming A-Z post on "I" -- "Intention": Are you doing this on purpose? :-)

    Also, I tried to correct my URL at Google+ and don't know if I can without creating a new account. That doesn't make sense. I'll work on it later. And no other ID choice fits for me here.

    I enjoy reading your experiences. They are so similar to mine.

    Samantha Mozart

    1. haha well some say empathy is linked to psychic ability, but trust me Samantha I'm having enough trouble digging out my own experiences to try and imagine what you are going to come up with next...

      It's not your google URL that needs changing, just the name of your website in the about me section of your google page

  3. Hi Ida - being prepared and you're so right about the 'warnings' it's your daughter I'm here .. or making sure they know you're in the house, by going to greet them. Thinking in advance .. helps so much ... you did do an awful lot for your mother, that must have helped her a great deal .. and you too .. cheers Hilary

    1. Nursing training and work in aged care certainly helped. Mum was grateful for any and all help she received, but she would have also been quite content to manage without. She was somewhat saintly like that.

  4. My aunt was diagnosed with alzheimers, but cancer took her before the disease could really progress. One change that did happen to her though was going from a very domineering personality to quite soft spoken.

    1. Personalities do change often. Mum certainly lost her filter. I would often have to tell her to hush when she started commenting on things like what she thought of what we were wearing, and she even started swearing - often calling herself a d&$%head when her hands or brain didn't work properly.

  5. Patience, I'm not sure I have enough of it when it comes to being a caregiver, Ida. But I think, we learn if we're open and really care.

    1. Even well trained nurses yell at their patients sometimes. It's so easy to forget and not be able to understand why certain behaviours are present. An open mind and willingness to learn are certainly key.

  6. Patience - a virtue that usually requires practice, kindness, true empathy. It's pretty scary imagining this relationship between mother and daughter that is turned upside down, the mother becoming the child, the daughter the mother/carer. We will never know until we face this frustrating difficult challenge. Thank you Ida for sharing this with us.

    1. Hmm perhaps this story should have been under P for patience... though patience are caring are linked in every stage. Dad often tried to ease Mum's anxiety (and perhaps even his own) by commenting on the role reversal between mother and daughter. He would say that Mum cared for me when I was little and now she could be happy I was doing it for her - that it was only natural.

  7. Age brings its own set of issues and if the seniors are unwilling to accept (or unable to because of some reason like Alzheimer's) their restrictions then its a huge huge test on the carers. I can relate to your posts so well as we too are looking after ageing parents. Thanks for sharing your experience Ida.