Margaret Tomkins

May 25, 2016

The morning started with a few urgent words, “come, it’s serious.” A rush to the house found my mum muttering away with continuous repetitive words but showing signs of massive confusion, drooling and lack of movement in her right side.  An ambulance arrived, a trip to hospital was made and this started the new chapter of our lives and our mother’s.

My mother had been diagnosed with early dementia the year before and there were adjustments and acceptance that had to be processed. But this new chapter was more than we could bear at times.

Rehabilitation was tried but there didn’t seem to be much recognition of what was being asked of her and there certainly wasn’t much recognition on our behalf of what was being told to us by mum.

Eventually the only solution, at the time, was a dementia-secure area at a nursing home. The shock and the horror of all of this was a daily heartbreak, with not a lot of hope offered due to the inability to give information or understand what was being asked of us by mum.

She had mobility and the use of her right side but with limited awareness of what was going on that side of her body. Eating was a nightmare, dressing caused confusion but her gentle spirit encouraged us.  

Eventually after a month my sister and dad took her out of the home and trialed her at my sister’s and improvement came to the point that she was able to go and live back at home with dad, that was two years ago.

Mum’s language centre crashed with the stroke – no reading, no writing, no understanding of what we were saying and no understanding of what she was saying to us. Yes, there were words that she said and at times even small sentences, more like statements that we understood but a new communication schedule had to be learnt.

We were told that she had expressive and receptive aphasia and coupled with the dementia it seemed like a unique situation. Maybe there are others out there who have experienced this and our hearts go out to you too.

Mum doesn’t know that we don’t understand her and mostly she doesn’t know that she doesn’t understand us. But she does know when she is not included in a conversation and when conversations go backward and forward between others around her.

We are no longer able to have a conversation, as we know a conversation to be, but we respond to her statements and try to get our “that’s good” or our “oh, it’s OK” right depending on the way she expresses her statement.  Dad is wonderful with trying to respond the way she expects but he does get it wrong at times and things are ‘quiet’ for a while, then life goes on again. Trying to explain what is happening or what is to happen is very difficult, very challenging and patience is the number one virtue that we strive to attain.

My sister and I sometimes share a tear and say to each other, “if only we could have mum back for a day”.  If only.  We have learnt to enjoy as many moments with her as we can for as long as we can. The dementia increases and the understanding decreases but she has enjoyed two extra years of quality care and family love.  She still cares about us in her little gestures and still those little words sneak out, “be careful” and “are you right?” as she watches out for us. What an example she is to us and how deep-rooted is her love for us!

Body language is a wonderful thing. A hug, a kiss, a rub of the back, a gentle hand gesture, a massage of the hands, a filing of the nails, a hair comb, a bunch of flowers all tell her she is loved and everything is as ‘normal’ as it can be.

She still enjoys a drive in the car, a soft curly ice-cream through the ‘drive-thru’, a nice cold lemonade, a piece of lemon-meringue pie and a walk around the shops.  She likes to pull-out the dead leaves in my garden, fold my clothes, wipe-up the dishes, cut out pictures from magazines and ‘watches me’ pin material onto other fabric, like she did as a seamstress many years ago.

Her happy disposition and her ability to enjoy a bit of fun still shines through and gives us hope for another day when she isn’t cooperative and is upset with us for a reason we probably will never know why.

The things we learn from this experience include patience, acceptance, unconditional love, communication without words and language, and a desire to give a person quality of life for as long as we can with as much of ourselves poured into them and an appreciation for the chance to have her here a little longer.