October 2014

Betty has dementia

Grief is a constant companion when a loved one has dementia. And so, too, is grace, writes Good Samaritan Sister Patty Fawkner.

BY Patty Fawkner SGS

Betty has dementia. Betty has had dementia for over eight years. Betty is my mother.

“Mum will know when it’s time to go into care,” I would confidently say to my five siblings as Betty aged. I had utter faith in my ever-practical, no-frills, no self-pitying mother. I was wrong.

A sober, unsentimental woman, Betty had met head-on all the challenges, joys and heartaches that come with rearing a large family with very modest means. I saw the height of her heroism and the depth of her love when Frank, the love of her life and my Dad, was diagnosed with cancer at age 57. Frank died 18 difficult months later.

For 25 years she lived on her own and cared meticulously for the family home. But slowly, and then somewhat precipitously, Betty began to fail. She could no longer manage her money, her household, herself. She lost keys, money, her wedding and engagement rings. And she, herself, got lost.

While her anxiety levels varied, those of her family were on constant red alert. Yes, we got the care packages and, yes, we attempted the in-house support, but Betty resisted because she “didn’t need help”. Lesson number one: Betty, as with all dementia sufferers, had lost the capacity to assess her own capacity. Logic, rational and evidenced-base arguments counted for nothing.

I got the job of talking with her, to say it was time to go into care. For over an hour I cajoled, I reasoned, I wept. “I’m not going anywhere,” was her response. Forty minutes later, “Alright. I’ll go, but I want you all to know I’m not happy about this”. Thirty minutes later, “Alright. I’ll go and I’ll go graciously”.

I could hardly wait to phone each of my siblings to share this impasse-breaking news.

But two days later Betty had forgotten our heart-wrenching conversation. I began the conversation again the next week and again the next. Each time there was the same pattern of resistance, begrudging acceptance, followed by gracious acquiescence. Amazing.

We were blessed in being able to find a place in a new state-of-the-art dementia unit in a suburb just around the corner from where Betty was born 85 years earlier.

She was one of the first residents and was soon joined by 13 others in her wing. We sold the family home to pay for her accommodation. Overwhelming relief that Betty was safe and lovingly cared for trumped any other emotion we experienced over that time.

Eight years on she is the only survivor from the original intake. Now 92, Betty’s dementia advances relentlessly. Physically she is frailer, though some days she looks as though she might live to 102!

Grief is a constant companion when a loved one has dementia.

There is grief for memories lost and for stories and secrets we can no longer share. As soon as I am out of sight Betty will not recall my visit. “It’s not that she really forgets,” a dementia specialist tells us; “it’s just that the experience is not ‘laid down’ in her brain, so there is no memory upon which to draw.”

But even Betty’s former, pre-dementia life is no longer etched in her memory. She no longer remembers Frank or “the boys” – her five brothers – or her much loved sister. Her former life is now etched in her work-worn hands, and in her character and in her heart.

In an inchoate way she ‘remembers’ her mother. Physical and emotional disorientation accompany the many urinary tract infections to which Betty is susceptible. At these times, she is inconsolable. “Where am I? I want to go home. Where is Mum? I want Mum.” Her yearning and distress is heart-breaking.

Soon after Betty went into care, I was diagnosed with cancer and underwent surgery. I would have loved some comforting mothering. My mother was there, but the mother in whom I could confide was gone – another grief.

Some weeks back Betty must have either fallen onto the floor or into a bedside table during the night. An alarm was activated as soon as she got out of bed, but some failure in the usually well-oiled system meant that no night staff came to her aid. She was found back in bed by the morning staff, hours later. Of course she had no memory of what had occurred.

I was away and saw her a week later. Betty still had a huge lump on her forehead and half her face was bruised deeply, ugly. I cried when I saw her, more at the thought of my darling mother enduring this jarring, pain-inducing accident with no one to comfort her in the moment.

Grief is one companion. And so, too, is grace.

Betty was never an overly demonstrative woman, but now the dementia seems to have let the affection genie – both hers and mine – out of the bottle. I am just so grateful. I love cupping her ever-so-soft face in my hands, looking into her eyes, and saying, “I love you, my darling mother”. I joke with her that her response should be, “And I love you my darling daughter”. She used to be able to say that, but not now.

One day I ask playfully, “Do you love me?” She responds seriously, yet with a twinkle in the eye, “I do”. I push my luck further. “How much?” “Millions,” she replies. I go away a happy woman.

Betty seems to have rekindled a childlike delight in the simple things of life – looking at the clouds, being enchanted by a child, a flower, or a photo. Always one with a sweet tooth, we spoil her with chocolates. She savours each chocolate as though she’s stealthily partaking in some guilty, indulgent pleasure.

There are as many laughs as there are tears. Earlier on when I could take her out for a walk, I expressed my concern that we shouldn’t walk too far. “You get tired, don’t forget,” I sensibly say. “Well you’ll just have to piggyback me back home,” she declares impishly.

We see many signs of her playfulness and her familiar straight-shooting style. One of the residents fancies himself as a dancer and is often poised ready to do a twirl à la Fred Astaire. Betty looks at him, looks at me, rolls her eyes and says “Look at that silly old b—-r“.

Betty was born Elizabeth Taylor, and like the movie star, appearances and grooming have always been important to her. When she sees an overweight person, she comments in a loud stage whisper, “Look at the size of that!” “Mum!” I quickly remonstrate. She smiles, hunches her shoulders and places a finger guiltily on her lips, pretending to be contrite.

Just the other day I was sitting with Betty as my sister helped her with her lunch. She stopped eating, gazed at the woman opposite, looked conspiratorially at us and announced, “See that one, over there? She hasn’t got a clue”. “Really?” we say suppressing our laughter.

Ronald Rolheiser reminds me that “Jesus gave his life to us through his activity; Jesus gave his death to us through his passivity”. And so with Betty.

All her adult life she was in charge of a family and a household. She worked hard, cooking and cleaning, sewing and scrimping to make ends meet. In all this activity as wife, mother, nanna, sister and friend, Betty gave her life away. Now, she is unable to be in charge of anything – even of her most basic needs.

Activity gives way to passivity. Staff and family perform the tasks that she once so competently mastered. In a society that equates worth and value with utility, work and activity, in a society which speaks vociferously about euthanasia, Betty’s life might be measured as having limited value.

James Hillman in his book, The Force of Character and Lasting Life, asks the question: What is our value to others once our practical usefulness, and perhaps even our sanity, are gone? Character, he says – our own and others.

“An old woman may be helpful simply as a figure valued for her character. Like a stone at the bottom of a riverbed, she may do nothing but stay still and hold her ground, but the river has to take her into account and alter its flow because of her.”

Betty continues to give her life away in her diminishment and frailty. She gives to me now different gifts, at times deeper gifts, than she was able to give to me in her strength and activity.

Betty has dementia. Betty is my mother and Betty is beautiful. She is priceless beyond all imagining.

Patty Fawkner

Sister Patty Fawkner is a former Congregational Leader of the Sisters of the Good Samaritan. She is an adult educator, writer and facilitator with formal tertiary qualifications in arts, education, theology and spirituality. Patty is interested in exploring what wisdom the Christian tradition has for contemporary issues. She has an abiding interest in questions of justice and spirituality.

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