Dementia: A lesson in love and patience.

In my lifetime, I hadn’t known anyone with dementia, so when my dear mother started behaving strangely soon after turning ninety, it took some time for ‘the penny to drop’ that she was going down the difficult dementia track.  When my dad died she was 85, so full of life and with a great ( if rather naughty) sense of humour, that my brothers and I were sure that she would be with us for many years yet.

Mum was a good pianist, played mainly ‘by ear’, but she didn’t play her piano any more. If she wasn’t ‘tickling the ivories’, she used to have a record playing or the radio on … but not any more. If people tried to befriend her, she rejected them. She was convinced that someone was breaking into her house and stealing things, but when I visited I would find them in her storage cupboard.

As her condition deteriorated, she was so convinced that her home was being entered each night that she had two large carving knives in her bedside drawer.  And so it progressed .. phoning three or more orders to her local grocer each week, or none at all. Filling her oven with magazines and books, wearing the same clothes every day until they were filthy and, the final straw was when rotting vegetables were discovered on her wardrobe floor because she had hidden them from the (imaginary) thieves. It was a sad, sad time made more difficult by the fact that none of us, her family, lived near. We relied very heavily on her neighbours as she absolutely refused to live with, or near, any of us. We tried but it all became too difficult.

Obviously, the next move was secure dementia care where she was safe, warm and fed. We phoned her often and flew to the South Island to visit as often as possible, knowing that she wouldn’t have a clue who we were, but she told us some interesting stories … in her ‘child state’, biking up the road to play with some friends, and seeing other children who had hit her. At other times, in her adult state, she would complain that she’d had five men in her room last night!  You learn to nod, agree, express surprise, but not ever argue because, in that state, they cannot process it and just get upset.

To assist the staff with their communication with Mum, I put together a book with many photos of her life, family information etc. under the following titles ..  Friends, School/Employment, Places I have lived, Significant events in life, Special memories, Interests and Hobbies, My typical day, Things you should know ( favourite food, bath v shower), and How I communicate.

As someone ‘learning on the job’, I was greatly helped by information from John Stringer in Christchurch. Apart from dementia support groups, other resources he would recommend include the movie The Notebook ( 2004 ) and Louis Theroux’s BBC series Extreme Love: Dementia

John cared for his mother and likens it to the way she cared for him and his siblings. In his words, I am caring for her now, like she did for me and my twin sister and other siblings when we were mewling, puking and needed our nappies changed. Her love was unconditional then, mine is now. This is the transaction of life for the unselfish.’

According to John, dementia patients suffer from a special syndrome called ‘the sundowner effect’. This occurs between 4-7pm when the sun starts to wane. They become anxious and want to pack up and go home, so they can feel secure. It is, apparently, a common emotion in children, who were perhaps collected late from school or Cubs by a parent as it started to get dark. It relates to a threat of abandonment and not being loved.

John also says that ‘Alzheimer’s sufferers often manifest the attributes and character they had in life, and these traits can accentuate. If they were kind and patient, they will be more so. Bitter, selfish people tend to become a problem when dementia sets in and some men can become lecherous’. It is a lesson about the richness of values through life.

That last point about men becoming lecherous reminds me of a man who was in secure dementia care with my mother.  Every afternoon his lovely wife would sit with him and hold his hands, which I thought was very sweet. I then found out through personal experience why his wife held his hands ..  if he got near a woman, any woman, his hands would be on the woman’s breasts!

 

by The Blonde


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A guest post submitted to Whaleoil and edited by Whaleoil staff.

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