Tuesday, 7 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.  She heard the back door open, and didn't want to  wake Dad who was sleeping on the couch, so she got up expecting to face a burglar. 

Her legs were very weak by this stage but she would forget she couldn't get up or walk safely on her own. I heard her moving in the lounge, which always made me panic a little. I dropped the washing on the floor and almost knocked her over when we met in the kitchen. I never expected her to have got so far. We both got a fright but were instantly relieved. 

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

  2. 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

  3. 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.

  4. 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.

  5. 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.


Feedback and your own stories are welcome.