The sunset years

Dealing with Dementia – when the child becomes the parent

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The kids have left home, we are officially empty nesters, about to embark on a stage of our life with the freedom of fewer obligations and responsibilities.

Many of us however find that this time of life coincides with the need to care for our elderly parents. Ironically, it often becomes a time when the child becomes the parent.

We have all seen the social media “memes” about spending time with our parents before they die.

But all too often, it is not death that causes the separation, but illness. Cognitive impairment can cause a separation which brings a long slow goodbye. The time when having a meaningful conversation is no longer possible, but the person you love is physically very much still there.

Dementia and Parkinsons. My father suffers from both. Whilst he is in care, I still maintain an active role in his life, experiencing the internal grief as I witness the slow decline. Every day brings little things that are no more.

Recently I finished an excellent book, Rain Birds by Harriet McKnight, which deals with this gradual loss which occurs in families. I found myself continually nodding my head in recognition as I read the story of a woman coming to terms with her husband’s decline into dementia. It was so helpful to know that my feelings of continual frustration weren’t selfish or unreasonable, but a normal reaction to this different type of grief.

Dad was an astute and articulate businessman, who read the Sydney Morning Herald from cover to cover every day. He would read at least two non-fiction books per week and never missed a footy or cricket match. He had a lifelong interest in politics, and would have strident and informed discussions on local and world events.

Today he can no longer decipher the hieroglyphics on the page. Initially we assumed it was the failing eyesight that comes with age. Until specialist diagnosis confirmed that his level of cognitive impairment meant he would recognise the word “cat” as an indecipherable “%gh.”

For a while I would try to read the important stories to him each day. On the mornings he can comprehend, he is no longer interested as he slowly decathects with life.

He no longer understands what voting is and believes Robert Menzies is the Prime Minister.

Mornings are the only time to attempt a quality visit. By mid afternoon he is in his own little fantasy world where the people in the ceiling are taking notes on every word that is uttered in his room. Some days he calls me “Shirley”. I don’t know who she was, but at least he still remembers I am his daughter. For now.

Today he can no longer tell the time on his analogue watch, and frequently changes the time to what “he thinks it should be”. The “talking watch” we bought him is a godsend, when he isn’t instinctively looking at his wrist for the time.

Fortunately while he was still competent he organised me to be his power of attorney and medical guardian. Something we should all put in place to protect ourselves and our loved ones.

The overwhelming need to invoke this to protect him from himself became evident the day he attempted to withdraw $10,000 cash from his bank account to pay his “tax bill”. It was a $10 club membership renewal bearing the mandatory words “Tax Invoice”. The cash would no doubt have been given to the first person he encountered to “pay his bill” or else hidden in a safe place. Like a garbage bin.

A once successful businessman who can no longer tell the difference between a $50 note and a $2 coin.

Dad was a keen rugby league enthusiast, following every season since 1930 and coaching juniors in his younger years. He can tell you who won the rugby league grand final in 1952, but can’t remember to turn the tap off when he visits the bathroom.  In fact he no longer has any interest in the sport which was once his passion. On State of Origin night the TV screen sat blank.

A huge Sinatra fan, Dad would listen to Frankie for hours, singing along to his favourite songs. Today, when I put a CD in the player “the noise” upsets him after just a few minutes.

Then there are the unusual outfits. Do you tell them, or just let it be? I remember shopping with my mother in law, a very fashion conscious woman, during her sunset years. Getting her out of the car I realised she had her shower bag, not her handbag over one arm. Do you let her think she is fabulous? Or let her go and preserve her dignity? It is a fine line we walk every day.

The withdrawal from life has been a slow and natural progression. From an active grandfather who would ferry my youngest sports mad son to his many games, giving both praise and constructive criticism from the sidelines.

Then his weekly home visits once he went into care, where he would have a day of “normality”. Helping me to potter in the garden, watering the pot plants, tending the stag horns, sometimes helping Ian on his latest DIY project, playing with the dogs and having a family lunch.

Now I am grateful for the hour or so I can get him out of his room to come home for a cup of coffee. Today was his 91st birthday, so we of course had birthday cake. He had no idea what the cake was about, except that it was a “nice morning tea”. Once a lover of good food, I had to explain to him how to eat the cheeses, nuts and biscuits he adores which I had prepared as a birthday hamper.

But at least we knew the significance of the day and were able to celebrate his milestone and reminisce joyfully on what was.

Spend some quality time with your parents today while you still can.

 

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