Betty has dementia

Patty Fawkner SGS with her mother, Betty

Patty Fawkner SGS with her mother, Betty

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.

* Good Samaritan Sister, Patty Fawkner is an adult educator, writer and facilitator. 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. Her formal tertiary qualifications are in arts, education, theology and spirituality.

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The Good Oil, October 21, 2014. If you would like to republish this article, please contact the editor.

74 Responses to “Betty has dementia”

  1. Mario Micallef says:

    What a lovely piece of writing Patty! Thanks for sharing. I came across this article by chance – or providence! – surfing the net! I’m sure your writing can help many.

    By the way, probably you don’t remember me – back in CTC days in Melbourne – not exactly yesterday! A lot has happened since then, and I’ve been living in Rome for 14 years now. Which, in a way is a blessing, as I get to go home more often. Nina – MY mum – is 80 now, and getting very frail. I notice the difference every time I go to visit, and I suppose my own grief process is kicking in. I often catch myself day-dreaming – plenty of memories, how much time is left, and, yes, weirdly enough, even doing the homily for her funeral! What a gift mums are!

    Wishing you lots of blessings, Patty, and plenty of Peace.

    p.s.: I love the photo of you two. To be framed and cherished.

    • Patty Fawkner says:

      Dear Mario, of course I remember you from when we studied theology together in Melbourne . I wish I had known that you were in Rome as I have just returned home from there this week! I have been in Rome 5 times in the last few years working with the Good Shepherd Sisters. Blessings on your work in the Eternal City.

  2. Kate Swaffer says:

    A heartfelt story, and beautifully written.

    My one concern is the use of the word ‘sufferer’ used to refer to Betty, which may be the situation in your case, but generally speaking that word is no longer appropriate to use publicly when referring to people with dementia. In the same way it is not approrpiate to call a person with any other disability a retard.

    Language guidelines for dementia as far back as 2008 (Alzheimer’s Ireland) have suggested it not be used, and Alzheimer’s Australia released updated language guidelines here (2014), found here:

    • Patty Fawkner says:

      Dear Kate, language is so important and I am extremely grateful to you or alerting me to the appropriate use of language in regard to those with dementia. I found the article on language very helpful. Seasons greetings.

  3. Anne Dixon says:

    Bit behind with the reading this month – oh Patty, what an article – thank you for sharing – I so miss my mum – I’d give so much for a hug, a word, a wise crack, a joke, a look and yet they are with me, quite tangible. I was looking at a photo of mum and dad and I can remember every single blemish on their faces, arms and hands – we red heads have many blemishes!! But I just wish I could touch them….
    Enjoy these precious days dear Patty.

  4. Myrtle Moodley says:

    Such a beautiful and inspiring tribute to a mother who has dementia.This article could not have come at a better time.My husband,83yrs old is in a nursing home and has the beginnings of Dementia.For the last few days I have been feeling exhausted and slightly depressed at the growth in his dementia.He spent a few hours with our son on his 50th birthday.Also present were our five granddaughters.It became obvious by the topics of conversation that the dementia is getting worse.Feeling low and a bit angry, I was alerted to Sr.Pat’s article.I was so touched by her love and commitment to her Mum,that my spirit lifted and will be a better visitor to my husband the next time I visit him.Thank you,Sister for sharing such a loving and inspiring story of your dear Mum.Your caring and loving attitude has to have come from her.God Bless you and her and the rest of your family

    • Patty Fawkner says:

      Dear Myrtle, you will have your own unique griefs and joys with your dear husband. I don’t know what it must be like to have a spouse with dementia. My thoughts and prayers are with you.

  5. Gabrielle Morgan says:

    Dear Patty –
    thank you, in the midst of this sad/beautiful time with your Mother, for sharing this so widely. Often these things are shared after the ‘event’ but you have shown courage in doing it now. I’m sure many who read it and who maybe feel very alone in similar circumstances, will feel some comfort in knowing that there are many others out there who know what they’re going through.

  6. Gerri Boylan says:

    Patty, thanks for such a warm and loving story from your heart about your dear mum and you……..truly beautiful and inspiring.

  7. Maria Scheffers says:

    Dear Sr Patty, thank you for your special written, true story about your mother Betty who has had a full and wonderful life for so many years followed by dementia. Now she is able to sit back in grace and finally let others take care of her. No doubt her family will bring a smile on her face when present even though forgotten when not there. I visit a very close friend suffering Alzheimer’s, the smile on her face when I walk in and say hello makes me feel so good. On several occasions she said to me “I hope God will bless you”, I then said to her “and God bless you too”. I wish Betty, you and all her loved ones blessings for serenity and peace.

  8. Glenda Bourke says:

    Patty, You told me that this month’s would be different and I have been waiting to see what this meant. I wasn’t expecting a personal account of your journey into grief and loss. How tenderly you describe this sad but beautiful time with Betty, your mother. Thank you for doing so with such grace, humility and wisdom. My parents both died in their sixties. So I know little of this mysterious time at a personal level. My thoughts and prayers go out to you and all your loved ones.

  9. Jan Clark says:

    Dear Patty,
    My heart went out to you when I read your story. Thank you for sharing such an intimate and sad yet love filled and ‘priceless’ experience of Betty.

    I cared for my Mum for her/our 15 year journey through Alzheimer’s [I was an only child and single so could do this] and it broke my heart in the last weeks when I could no longer lift or carry her and residential care was the only option. The journey was not easy, especially in the last few years when her anxiety and utter distress was constant. At times looking for grace or a blessing seemed beyond what was possible but I somehow I ‘knew’ it was there, even if hidden. The gifts you spoke of are very real and even now, 9 years on, are ones I too am thankful for.

    I once read that A.D. [or any form or dementia] is “the long good-bye”and as you said accompanied by much grief. There were two final blessings though, when the end came it was with the knowledge that my dear Mum’s suffering was over and she was returning ‘home’ to the One she loved and the ones who ‘were waiting for her’. The other blessing was that a couple of weeks after her death I was diagnosed with a brain tumour and could go ahead with treatment in the knowledge that what was happening to me would have no impact on her and the care I could give her. Indeed, God is good.

    May your journey with your Mum continue to hold blessings among the sadnesses. I will remember you and your family in my prayers and when it comes may the end of the ‘long good-bye’ be filled with peace and joy as Betty goes from the ones who love her here to the One who will enfold her and restore her to the beautiful woman, wife and mother that you all remember and have cherished so lovingly.

    • Patty Fawkner says:

      Jan, what an amazing story of faithful love. Yes, the graces can be deeply hidden. You are amazing! Seeing the “bright side” of being diagnosed with a brain tumour! Blessings on you.

  10. Joan wharton says:

    Hi Patty. So tenderly written showing both the sadness we experience with the ageing of parents as well as the love that deepens when we accompany them in their frailty. Thank you. Joan

  11. Leonie Wallace says:

    Many thanks Patty for sharing your story. It has touched me deeply, I can identify so easily with much of what you have written. My Mum died almost 5 years ago and at times it seems like it was only last week. Being with someone we love dearly and watching their decline with Alzheimers is such a unique and (at times) lonely journey. I have read your story several times and the tears have certainly been there. Seeing the childlike delight you spoke about is so true. Keep on treasuring the time you have with your lovely Mum and big thanks for sharing your story.

    • pfawkner says:

      Thanks, Leonie. I’ve been touched by the shared grief of so many people. Even though there’s the loneliness you mentioned, there’s also companionship in sharing the stories. Peace.

  12. Carole Geoghegan says:

    Thank you, the road ahead with my 92 year old father and 82 year old mother, doesn’t look as emotionally empty having read your ability to see the positives. Sad as they may be.

  13. Renai Floyd says:

    Although I have not met Patty by reading this I feel connecting in some way. As an outsider you dont realise the struggles a child goes through watching your parents suffee. Thank you for sharing it has certainly opened up my eyes n mind.

  14. Jan Audet says:

    Thanks Patty, I miss her too an the fact that my children will never know her like I did. Xx Jan

  15. Patty, this was a fabulous account of your relationship with your dear mother. My mother is 94 and I know that it would have taken some courage to write the article. . Janette Mentha Columban Mission

    • Patty Fawkner says:

      How lovely to hear from you Janette. When I was asked to write it I was somewhat reluctant as I didn’t want to exploit Mum in any way. But when I started I loved writing it – telling Betty’s story and wanting her to shine through. Best wishes.

  16. Margaret Keane says:

    Patty, your words give me food for thought and much to learn. Prayers and blessings on you all.

  17. Gerry Dalton says:

    Thank you so much for sharing the journey with your mother. I too had a few tears on the keyboard. I dwelt upon the image of ‘work worn hands’ and thought of my own dearest Mum. My dad died at a similar age and Mum raised 7 children. It is a treasure to hold your Mum’s hands at any time. All my best to Betty – I feel like I know her now.

  18. Nerina Zanardo says:

    “Thank You” from me says it all Patty! I’m sharing your story with the sisters of my community.

  19. Debra Vermeer says:

    Thanks for this beautiful, very personal reflection, Patty. God bless your dear Mum and also you and your family.

  20. Pat Hearity says:

    Patty, the look of love exuding from you and Betty to each other captures all the words needing expression. Placing my head on my mother’s heart , ( she too had dementia ) looking into her eyes filled me with love beyond telling. As you say grace and pain are interwoven. Thanks so much

  21. thank you for sharing this story as I have witnessed a few family and friends battle this condition. It also holds special meaning as in the early 1960’s I grew up near you in Wilga St.
    (Julie CORSO)

  22. Emily Moore says:

    Thank you Patty – such a lovely story with beautiful insights about respect and tender love.
    Your piece reminds me of a podcast I heard from Michael Himes of Boston College from Living the Journey: Spirituality for the Second Half of Life. His insights about end of life spirituality helped me in the experience of the loss of my Dad this year.
    Himes also talks of faithfully caring for his own mother who had dementia. You can find it on the Boston College C21 site or maybe this link will work.
    I would really recommend it. Apart from the more profound insights, listening to Himes gave me great nostalgia for those inspiring lectures at Boston College!
    with love

  23. Liz Costigan says:

    Patty thanks so much for this beautiful reflection, so sensitively written. How fortunate is Betty to have a daughter like yourself. I would love to give a copy of your article to a few people I know who are struggling with parents in a similar situation as Betty. Would that be OK with you? I love your ending ‘she is priceless beyond all imagining’

  24. Beth Riolo says:

    Thank you Patty for sharing your experiences with your darling Mum. It reminds me to hold close and cherish my own more deeply. Beautifully written. Thanks.

    • Patty Fawkner says:

      She is a darling, Beth. I can’t help but smile of what she would have made of diverse people reading about her. She was always a very private, no limelight kind of person.

  25. Carmel Babos says:

    Betty may not remember us but we remember her. Family, friends, stories, laughter, sharing – good times and tough. I read your beautiful article and did the only thing I could – I cried! Much love to you all as the journey continues.

    • Patty Fawkner says:

      Hello Carm. Mum and Dad always fondly referred to you as “Dearest of Carms”! I’m glad when others remember Betty. I certainly cried and laughed as I wrote this piece. Love to you.

  26. Moya Weissenfeld says:

    Thanks, Patty. It’s lovely to hear of Betty, whom I often think of, always remembering her as a beautiful lady. How beautifully you have expressed the mystery of her, and your, continuing journeys.

    • Patty Fawkner says:

      Moya, I appreciate your words. Yes, you would have known Betty in her more active days. Were you there when she helped us settle into Hereford Street sorting out all our cupboards – always the practical helper.

  27. Marie Casamento says:

    Patty thanks for sharing Betty’s journey and that of you and your siblings. So palpable and so intimate. Marie Cas

    • Patty Fawkner says:

      Dear Marie, you’ve been part of Betty’s journey as I recall lovely celebrations at Ashfield. Thanks for your beautiful Mindfulness poem. I’m trying – to be mindful, that is!

  28. Thanks Pstty! This was one awesome sharing! My younger sister was diagnosed with dementia at age 57 and died because of it at age 65. You named many of the feelings that we all suffer when one that we love suffers in this way. Helen ( from the Sangre Days….your Snow White ones!!)

    • Patty Fawkner says:

      Helen, what a delight to connect with you in cyberspace! Dementia at 57 – how tragic. It’s a tough, but graced journey. I recall Sangre days with such appreciation. Blessings.

  29. Leo Pitts says:

    Patty, at a time and in a society where old age is synonymous with some terminal disease, you have managed to help dispel that myth. Your generosity with mum is something we all need to emulate and the charity of the Carpenter shines through with a blinding light.
    Thank you so much.

  30. Jennine Lennox says:

    Patty, thank you for sharing Betty with us. What a beautiful tribute to your Mum who is “priceless beyond all imagining”. Tears are streaming down my face as I reach the end of your story about her. My own Mum had Alzheimers, diagnosed in her early 70s. We too existed in grief and grace for 7 long years until she died of a heart attack at 78, mercifully just before she got to the stage where she could no longer recognise us. 8 years on I still miss her terribly but grief has given way to eternal grace! Hope you will have lots more time to cup your Mum’s face in your hands and hear again, “millions”!

    • Patty Fawkner says:

      Jennine, how lovely to hear from you. By an amazing coincidence this very day I was asking Naomie Ruth how you were and where you were. I hope life is treating you gently. Blessings of Peace.

  31. Margaret Speechley says:

    Thanks you Patty, for this beautiful story of your dear Mum; what a remarkable woman she is. I love your insights and your valuing of all humanity – no matter where they are in their life. I believe that God’s image is in all stages of our lives – and that Betty’s story must teach us that we must never judge people or feel sorry for people who are not what society might deem as ‘useful’. We all have a place in God’s plan and your Mum is teaching us all so much. I will pray for Betty and know that she has a special place in our world/God’s world.
    Thank you and God bless you, your family and especially Betty.

  32. Sally Hunt says:

    I was very moved by this story. My aunt who I visit frequently also has Dementia and it is interesting how the relationship changes and you discover other pleasures in the connection.
    I totally loved the quote from James Hillman…..such a beautiful way to express one’s ‘raison d’etre’…and I often think of how enriching and yet so sad was our experience of nursing my aged mother through a long and unkind illness at the end of her life. Thank you for sharing your beautiful story

    • Patty Fawkner says:

      Sally, thanks so much for taking the trouble to comment. You’re right, the relationship does change over time and each stage of dementia or terminal illness is “enriching and sad”. Peace.

  33. Pam Faulkner says:

    Thank you Patty for this beautiful story about your dear & beautiful Mum. It has brought back so many memories of my Mum in her later years. I miss my Mum very much & have a photo of her on the dining room table, so I can speak to her as I go past. I thank God for the gift of these beautiful & special Mums in our lives & all the wonderful memories they give us.

  34. michelle reid says:

    what a lovely story patty and I love the photo of you both. what struct me most was the quote from james Hillman …”.that the river has to take into account and alter its flow because of her.” that is the true gift to all of us, we must bend and take into account what we have no control over! much love and give betty a hug for me,

    • Patty Fawkner says:

      Michelle, you shared many moments of Betty’s journey – at Newtown, Manly, Five Dock…Hillman’s quote is terrific isn’t it – showing that everyone, EVERYONE, has to be taken into account and given the utmost respect. So sad to be missing Saturday’s celebrations. Will be with you in spirit.

  35. Elizabeth Murray says:

    How beautiful, Patty. Thank you for sharing those insights and experiences – obviously so difficult for you, but also so enriching, not just for you, but for all those who now have the privilege of reading your story.

  36. Ailsa piper says:

    Lovely tender piece Patty. Grace for Betty to have you too. Thanks.

  37. Joan Micah says:

    This story should be read at meetings, discussion groups. A real eye opener. Thank you for sharing.

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