When I recently re-read 'Donna's Story', I was surprised to discover that my perspective had changed a little over the past two years. The book describes our lives together over the six years Donna lived at home.
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Will the Real Donna-Jean
Please Stand Up? Today, in 2018, she smiles at everyone, and loudly proclaims to all who come within earshot, “Hi! I’m Donna-Jean Frame!” So I ask the question, “Will the real Donna-Jean please stand up?” That phrase, from the 1950s TV quiz show, ‘What’s My Line?’ seems very appropriate to me today. Where is the ‘real’ Donna-Jean? Where is the pretty girl I teased about finally making it to the ‘top ten’ list of my girl-friends – almost sixty years ago? Where is the beautiful woman who fell in love with me and agreed to be my life’s partner – more than fifty years ago? Where is that wonderful companion who shared my adventures in Europe and elsewhere for over forty years? Where is that exciting woman who discovered, at the ripe old age of fifty, that |
she 'still had it’ with her dancing and artistic creativity? And dared to turn her dreams into reality?
Where is she; that happy woman who loved to share her breakfasts with me on our patio in the warm summer mornings – just ten years ago? Or a glass of Shiraz in the evenings; sitting, partially hidden in the trees of our garden, watching our neighbours come and go?
Yes! I ask, “Will the ‘real’ Donna-Jean please stand up?”
Today, Donna is but a shell of the ‘real’ Donna-Jean. The memories I have just described are no longer hers to enjoy. They’ve been taken away, stolen by a heartless rogue – the thief I call ‘Alzheimer’.
That master-of-deception, devilry and thievery, crept into Donna’s brain many, many years ago. Who knows how far back? Together, we watched helplessly as memory after memory, emotion after emotion, dexterity, capability and sensitivity, slowly disappeared.
In those early years, all we could do was wait as Master Alzheimer honed his devilish skills on the hapless Donna. He practised daily. He smiled and laughed at us both as he took things away from her; her joy, her ‘love of life’, her musical skills, her agility on the dance floor; even little things, like her ability to change the channels on our TV. But he was shrewd. He gave back some things as well. He gave back dismay, sorrow, tears, fear, anger. And ultimately, he gave Donna despair as well.
Nobody knew what small piece of her personality was going to disappear next. The professionals couldn’t guide us. “Everyone is different,” they said. “Only the outcome is common.”
But, through it all, there was one emotion that I never questioned, confident of its continuation – ‘love’. She loved me and I loved her. Nothing could change that.
Could it?
Over fifty years of married life, our love had evolved. Everyone’s does. ‘Love’ was no longer part of our conscious awareness. Sure! We often said we loved each other, but how often did those words come from our hearts? Love became a tacit emotion that we knew was there, but was only rarely spoken with passion.
In that last year, while Donna was still at home with me, there wasn’t very much ‘love’ evident in the air. Anger and tears had replaced it – from both of us. Touching each other with affection, sharing experiences, talking to each other, laughing, joking; mostly gone. Even singing and dancing, two of Donna’s innermost joys, was disappearing.
But ‘love’ was still there; I’m sure it was – underneath the surface. Perhaps not noticed or understood by either of us at the time, but clearly evident in retrospect. Even after a day filled with nothing but anger and tears, when I helped her go to bed and kissed her goodnight, the anguish of the day disappeared – replaced by calmness and love – for a while. Oh! – The power of a simple kiss.
As our conscious world drifted apart, our inner world closed in. Donna clung to me desperately; afraid that I would leave her and abandon her. I, too, held her very close to me; afraid of the same thing. On the surface, things appeared to be working okay with her at home. I believed I was able to cope, despite the days being very turbulent. However, I was slowly failing in my ability to care for her. My health was deteriorating.
The worst part was: I believed that I could continue her care; if only I could stay awake for those necessary twenty-four hours a day, seven days a week; if only I could put aside all the myriad little things we enjoyed together and focus one-hundred percent of my time taking care of her – cleaning her, feeding her, bathing her, entertaining her. Just plain attending to her everyday needs. While one half of my brain thought that I had the strength to continue, the other half, along with all my friends and relatives, kept telling me, “It can’t be done. It simply can’t be done! You tried!”
The day arrived - my ‘Black Wednesday’! It was an awful experience; an awful day. My role was to drive her to a residential care-home and commit her to the care of professionals, knowing that she wouldn’t be coming home with me – ever again. I said a kind of “Good-bye” to her; walked away; left her crying in the arms of nurses and care-aides, and went home with a deep hole in my heart. I tried to believe otherwise, and others said I was wrong, but I knew I had just abandoned her.
Of course I had abandoned her! I’d been thinking about it and planning her commitment for months without her knowledge. Then, on that Wednesday, she realized for the first time that she wouldn’t be coming home with me again. Her heart had just been broken. She didn’t understand. The person she had loved for fifty years had effectively told her he didn’t love her anymore and no longer wanted her with him.
No wonder she was aggressive to her new caregivers. No wonder they medicated her to keep her calm. Her heart had just been torn out. No-one loved her. Where was she to turn? I ask, “How can ‘love’ survive that little gambit?” Had Master Alzheimer discovered where she kept her love? Taken it? Destroyed it? Won the battle? I thought he had.
As her EX-caregiver, EX-husband, EX-lover, EX-companion, and ex-friend, I sat at home and couldn’t believe how callous I had been, how unthinking and brutal. I couldn’t sleep for about four days, then crashed in a stupor. When I woke up, my world had changed. I was alone and lonely. I heard her calling me, but it was only echoes in an otherwise empty house; only my vivid imagination.
Our home didn’t mean anything without her. Signs of her presence were everywhere. Her closet still full of her clothes; little bottles of scent on the bathroom shelves; her favourite ‘Anne Lindsay’ cook books; her big yellow bowl that she loved so much – the one I loathed – thinking it was so ugly.
She really enjoyed our garden, but I couldn’t go out in it anymore. I saw her everywhere; dead-heading the rhodos, watering the tomatoes, sitting in the arbor sipping Earl Grey, leaning over the fence talking to Elaine. And what was the point in me spending half a day preparing her favourite curry dinner – Indonesian ‘Kurry Kapitan’?
Six weeks passed before I could visit her and she haunted me through every one of those forty-odd days. I was certain she would completely reject me; start crying the moment she saw me and tell me to leave. My imagination was working overtime – to the point where I was frightened to visit her. There was no point. Thanks to Master Alzheimer, Donna’s love had finally been stolen from her.
The ‘real’ Donna-Jean had gone!
But friends who saw her told me that Donna had not gone. She was very much alive and her life continued. It was my anguish that was tearing me apart, not hers. With friends’ encouragement, I finally got up the necessary nerve to visit.
----
I am stunned! She doesn’t hate me! She’s happy to see me! She doesn’t ask why I’ve placed her in the care-home. She doesn’t ask where I have been for the past six weeks. She’s simply happy to see me. Hallelujah!
With a great deal of reluctance, I offer some tiny modicum of thanks to Master Alzheimer. It is he who has robbed her of her sense of time and her recent memories so that she no longer remembers that ‘Black Wednesday’. That’s my cross to bear. All she remembers is, “Here is a man that I know and enjoy. He makes me happy.”
I stop and think to myself, “Donna seems happy but does she still love me?” How could she?
Our first visit is good and I very carefully avoid any talk about missing her and desperately wanting to bring her back home with me. Our chat is friendly, cordial, and platonic. But there is no sparkle in her eyes, no affectionate touches, no smiles, no little happy moments of understanding between us. Has ‘The Rogue’ robbed her of her ability to express her love? Or, is the medication she’s on to quell her anxieties sufficient to stifle her emotions? It’s too soon to tell.
So I come home from that first visit, and from the many visits that follow, with a new determination that I must do my utmost to recreate those little sparkles, those affectionate looks and touches that have always been the special moments between us – ‘our love’. Maybe I won’t succeed but I shall try.
It is not a conscious plan on my part. In my conscious mind I believe that Alzheimer’s has taken her love. Does she have the feelings for me that I have newly re-discovered I have for her? For me, those tacit, almost indescribable feelings of love that have lain dormant for the past fifty years, are now out there on the surface, and they’re leaving me in turmoil.
In the weeks that follow, there are occasions when Donna looks at me with a haunting, pleading expression, and asks if she can come home with me. Those brief occasions hit me like a ton of bricks. Something of our past, pre-Alzheimer’s life together is still remembered – if only for a fleeting moment. And what am I to say? Each time she asks me that question, it requires me to reject her once again. Is this how I must express my love for her, by saying “No!” every time she asks if she can return to share her life with me?
As time passes, our affection for each other slowly grows again. Donna is always happy to see me and all my visits are warm and friendly. Is this growing affection her way of expressing her love? Maybe! I’m not sure.
Donna is showing her affection in many places. She is making new friends with her co-residents and care-aides. She is slowly coming to enjoy her new home and is happy. Her Alzheimer’s induced aggression has now all but disappeared. She no longer has tearful moments, no longer asks if she can come home with me. But the affection she is showing to me is also being shown to some of the male residents. And they reciprocate. This troubles me because I mistake these actions as an expression of love. Is Donna offering her love to others?
No! She is not! It is just ‘The Rogue’ wreaking havoc once again. He has robbed her of her natural inhibitions, yet left her with an active libido.
Donna is a teenager again and I’m dismayed. She over-bounds in her displays of affection towards me, and others. When I describe this to friends, it often induces a kind of nervous laughter. If it’s your parent, sibling, other relative or friend, you are somewhat surprised but see a bit of humour as well. When it’s your wife or husband, you think a little differently.
In our quiet chats together, Donna makes offers that are well outside the limits of what I call ‘social decorum’. It’s okay to quietly make those comments to me, but I am quite certain she makes similar offers to others. However, once again, I slowly begin to see that this ain’t love. It ain’t sex. It’s Alzheimer’s.
She has a new sparkle today. Sarcasm appears too, complete with a smirk after muttering a witticism. It is a new skill she has learned since entering care, and I find it quite appealing. In her past life, she only rarely uttered a sarcastic comment. To me this is a sign of comfort and happiness in her.
She occasionally peppers her conversation with four-letter words; words never uttered by her in the pre-Alzheimer’s years. When she does, she is fully cognizant of her action. It is always followed by a loud ‘guffaw’ as she watches the affect her comment is having on her audience, particularly her life-long friend, Marylynn.
Donna chatters endlessly and demands attention from all. She chastises me if I show too much attention to others – particularly women. A loud interjection of “SHUT UP”, or “I’M TALKING” is soon heard to stop me. It’s effective.
However, once again I ask that elusive question, “What about love?” I’m witnessing a new, happy Donna with a new personality displayed to all. But...what about love?
On every visit, Donna is happy to see me. Her eyes light up, her arms open wide, and she expects – no, demands – not one, not two, but three kisses before we start to chat. She might have to let go of the hand of that gentleman sitting beside her, but that’s okay. Her gentleman is often surprised by her action; sometimes a little dismayed, but all is amicable.
Sometimes she gets very excited about my visit. We might be found, slowly walking down the hall, holding hands. Donna; chattering away, telling me a host of things. Me; only rarely finding room to intersperse a comment. She doesn’t mind. She’s using long sentences with recognizable English words. However, I can only partially understand her. I have coined these occasions with the expression, “TPS” – ‘Thirty Percent Syndrome’. I can only understand about 30% of what she says. The remaining 70% is reserved for the Alzheimer’s residents who seem to understand everything.
Another wonderful thing is happening! Donna’s display of affection towards me is taking a different turn. While walking the hall, she stops – perhaps in the middle of a conversation. She puts her arm around me, squeezes me a little, looks up with her eyes sparkling, smiles and whispers, “Oh, Johnnie! I love you!” – then kisses me.
My heart does a leap! This expression of ‘love’ comes from her soul. It is not to be shared with her other gentleman friends.
I understand. The moment is brief but, for that moment, her lucidity is absolute. The expression is real. Her ‘love’ is still there. Ten minutes later, if I suggest we repeat that kiss, I will likely get the response, “What for? I just kissed you.”
Since that first exciting event, I have discovered that I do not have to wait for Donna to initiate her expression of love. By certain actions I take, like putting my arms around her and hugging her, like stroking her hair or commenting how pretty she looks, I can bring her briefly out of ‘Donna’s world’ into ‘our world’. Then I stop, look into her eyes, smile and say, “Oh, Donna. I love you!” just like she says to me. She responds with a big smile. Her eyes sparkle, and she squeezes me too. I have reached her soul!
And so I say this to you, Master Alzheimer, ‘rogue’, ‘devil’, ‘thief’. “You have done your worst, and I know you will claim the ultimate victory, but it will be hollow. You will have failed in your quest to find Donna’s soul and steal her love.”
I now know that, whatever the road ahead, our love for each other will remain.
It’s time to celebrate! The ‘real’ Donna-Jean is standing up!
Where is she; that happy woman who loved to share her breakfasts with me on our patio in the warm summer mornings – just ten years ago? Or a glass of Shiraz in the evenings; sitting, partially hidden in the trees of our garden, watching our neighbours come and go?
Yes! I ask, “Will the ‘real’ Donna-Jean please stand up?”
Today, Donna is but a shell of the ‘real’ Donna-Jean. The memories I have just described are no longer hers to enjoy. They’ve been taken away, stolen by a heartless rogue – the thief I call ‘Alzheimer’.
That master-of-deception, devilry and thievery, crept into Donna’s brain many, many years ago. Who knows how far back? Together, we watched helplessly as memory after memory, emotion after emotion, dexterity, capability and sensitivity, slowly disappeared.
In those early years, all we could do was wait as Master Alzheimer honed his devilish skills on the hapless Donna. He practised daily. He smiled and laughed at us both as he took things away from her; her joy, her ‘love of life’, her musical skills, her agility on the dance floor; even little things, like her ability to change the channels on our TV. But he was shrewd. He gave back some things as well. He gave back dismay, sorrow, tears, fear, anger. And ultimately, he gave Donna despair as well.
Nobody knew what small piece of her personality was going to disappear next. The professionals couldn’t guide us. “Everyone is different,” they said. “Only the outcome is common.”
But, through it all, there was one emotion that I never questioned, confident of its continuation – ‘love’. She loved me and I loved her. Nothing could change that.
Could it?
Over fifty years of married life, our love had evolved. Everyone’s does. ‘Love’ was no longer part of our conscious awareness. Sure! We often said we loved each other, but how often did those words come from our hearts? Love became a tacit emotion that we knew was there, but was only rarely spoken with passion.
In that last year, while Donna was still at home with me, there wasn’t very much ‘love’ evident in the air. Anger and tears had replaced it – from both of us. Touching each other with affection, sharing experiences, talking to each other, laughing, joking; mostly gone. Even singing and dancing, two of Donna’s innermost joys, was disappearing.
But ‘love’ was still there; I’m sure it was – underneath the surface. Perhaps not noticed or understood by either of us at the time, but clearly evident in retrospect. Even after a day filled with nothing but anger and tears, when I helped her go to bed and kissed her goodnight, the anguish of the day disappeared – replaced by calmness and love – for a while. Oh! – The power of a simple kiss.
As our conscious world drifted apart, our inner world closed in. Donna clung to me desperately; afraid that I would leave her and abandon her. I, too, held her very close to me; afraid of the same thing. On the surface, things appeared to be working okay with her at home. I believed I was able to cope, despite the days being very turbulent. However, I was slowly failing in my ability to care for her. My health was deteriorating.
The worst part was: I believed that I could continue her care; if only I could stay awake for those necessary twenty-four hours a day, seven days a week; if only I could put aside all the myriad little things we enjoyed together and focus one-hundred percent of my time taking care of her – cleaning her, feeding her, bathing her, entertaining her. Just plain attending to her everyday needs. While one half of my brain thought that I had the strength to continue, the other half, along with all my friends and relatives, kept telling me, “It can’t be done. It simply can’t be done! You tried!”
The day arrived - my ‘Black Wednesday’! It was an awful experience; an awful day. My role was to drive her to a residential care-home and commit her to the care of professionals, knowing that she wouldn’t be coming home with me – ever again. I said a kind of “Good-bye” to her; walked away; left her crying in the arms of nurses and care-aides, and went home with a deep hole in my heart. I tried to believe otherwise, and others said I was wrong, but I knew I had just abandoned her.
Of course I had abandoned her! I’d been thinking about it and planning her commitment for months without her knowledge. Then, on that Wednesday, she realized for the first time that she wouldn’t be coming home with me again. Her heart had just been broken. She didn’t understand. The person she had loved for fifty years had effectively told her he didn’t love her anymore and no longer wanted her with him.
No wonder she was aggressive to her new caregivers. No wonder they medicated her to keep her calm. Her heart had just been torn out. No-one loved her. Where was she to turn? I ask, “How can ‘love’ survive that little gambit?” Had Master Alzheimer discovered where she kept her love? Taken it? Destroyed it? Won the battle? I thought he had.
As her EX-caregiver, EX-husband, EX-lover, EX-companion, and ex-friend, I sat at home and couldn’t believe how callous I had been, how unthinking and brutal. I couldn’t sleep for about four days, then crashed in a stupor. When I woke up, my world had changed. I was alone and lonely. I heard her calling me, but it was only echoes in an otherwise empty house; only my vivid imagination.
Our home didn’t mean anything without her. Signs of her presence were everywhere. Her closet still full of her clothes; little bottles of scent on the bathroom shelves; her favourite ‘Anne Lindsay’ cook books; her big yellow bowl that she loved so much – the one I loathed – thinking it was so ugly.
She really enjoyed our garden, but I couldn’t go out in it anymore. I saw her everywhere; dead-heading the rhodos, watering the tomatoes, sitting in the arbor sipping Earl Grey, leaning over the fence talking to Elaine. And what was the point in me spending half a day preparing her favourite curry dinner – Indonesian ‘Kurry Kapitan’?
Six weeks passed before I could visit her and she haunted me through every one of those forty-odd days. I was certain she would completely reject me; start crying the moment she saw me and tell me to leave. My imagination was working overtime – to the point where I was frightened to visit her. There was no point. Thanks to Master Alzheimer, Donna’s love had finally been stolen from her.
The ‘real’ Donna-Jean had gone!
But friends who saw her told me that Donna had not gone. She was very much alive and her life continued. It was my anguish that was tearing me apart, not hers. With friends’ encouragement, I finally got up the necessary nerve to visit.
----
I am stunned! She doesn’t hate me! She’s happy to see me! She doesn’t ask why I’ve placed her in the care-home. She doesn’t ask where I have been for the past six weeks. She’s simply happy to see me. Hallelujah!
With a great deal of reluctance, I offer some tiny modicum of thanks to Master Alzheimer. It is he who has robbed her of her sense of time and her recent memories so that she no longer remembers that ‘Black Wednesday’. That’s my cross to bear. All she remembers is, “Here is a man that I know and enjoy. He makes me happy.”
I stop and think to myself, “Donna seems happy but does she still love me?” How could she?
Our first visit is good and I very carefully avoid any talk about missing her and desperately wanting to bring her back home with me. Our chat is friendly, cordial, and platonic. But there is no sparkle in her eyes, no affectionate touches, no smiles, no little happy moments of understanding between us. Has ‘The Rogue’ robbed her of her ability to express her love? Or, is the medication she’s on to quell her anxieties sufficient to stifle her emotions? It’s too soon to tell.
So I come home from that first visit, and from the many visits that follow, with a new determination that I must do my utmost to recreate those little sparkles, those affectionate looks and touches that have always been the special moments between us – ‘our love’. Maybe I won’t succeed but I shall try.
It is not a conscious plan on my part. In my conscious mind I believe that Alzheimer’s has taken her love. Does she have the feelings for me that I have newly re-discovered I have for her? For me, those tacit, almost indescribable feelings of love that have lain dormant for the past fifty years, are now out there on the surface, and they’re leaving me in turmoil.
In the weeks that follow, there are occasions when Donna looks at me with a haunting, pleading expression, and asks if she can come home with me. Those brief occasions hit me like a ton of bricks. Something of our past, pre-Alzheimer’s life together is still remembered – if only for a fleeting moment. And what am I to say? Each time she asks me that question, it requires me to reject her once again. Is this how I must express my love for her, by saying “No!” every time she asks if she can return to share her life with me?
As time passes, our affection for each other slowly grows again. Donna is always happy to see me and all my visits are warm and friendly. Is this growing affection her way of expressing her love? Maybe! I’m not sure.
Donna is showing her affection in many places. She is making new friends with her co-residents and care-aides. She is slowly coming to enjoy her new home and is happy. Her Alzheimer’s induced aggression has now all but disappeared. She no longer has tearful moments, no longer asks if she can come home with me. But the affection she is showing to me is also being shown to some of the male residents. And they reciprocate. This troubles me because I mistake these actions as an expression of love. Is Donna offering her love to others?
No! She is not! It is just ‘The Rogue’ wreaking havoc once again. He has robbed her of her natural inhibitions, yet left her with an active libido.
Donna is a teenager again and I’m dismayed. She over-bounds in her displays of affection towards me, and others. When I describe this to friends, it often induces a kind of nervous laughter. If it’s your parent, sibling, other relative or friend, you are somewhat surprised but see a bit of humour as well. When it’s your wife or husband, you think a little differently.
In our quiet chats together, Donna makes offers that are well outside the limits of what I call ‘social decorum’. It’s okay to quietly make those comments to me, but I am quite certain she makes similar offers to others. However, once again, I slowly begin to see that this ain’t love. It ain’t sex. It’s Alzheimer’s.
She has a new sparkle today. Sarcasm appears too, complete with a smirk after muttering a witticism. It is a new skill she has learned since entering care, and I find it quite appealing. In her past life, she only rarely uttered a sarcastic comment. To me this is a sign of comfort and happiness in her.
She occasionally peppers her conversation with four-letter words; words never uttered by her in the pre-Alzheimer’s years. When she does, she is fully cognizant of her action. It is always followed by a loud ‘guffaw’ as she watches the affect her comment is having on her audience, particularly her life-long friend, Marylynn.
Donna chatters endlessly and demands attention from all. She chastises me if I show too much attention to others – particularly women. A loud interjection of “SHUT UP”, or “I’M TALKING” is soon heard to stop me. It’s effective.
However, once again I ask that elusive question, “What about love?” I’m witnessing a new, happy Donna with a new personality displayed to all. But...what about love?
On every visit, Donna is happy to see me. Her eyes light up, her arms open wide, and she expects – no, demands – not one, not two, but three kisses before we start to chat. She might have to let go of the hand of that gentleman sitting beside her, but that’s okay. Her gentleman is often surprised by her action; sometimes a little dismayed, but all is amicable.
Sometimes she gets very excited about my visit. We might be found, slowly walking down the hall, holding hands. Donna; chattering away, telling me a host of things. Me; only rarely finding room to intersperse a comment. She doesn’t mind. She’s using long sentences with recognizable English words. However, I can only partially understand her. I have coined these occasions with the expression, “TPS” – ‘Thirty Percent Syndrome’. I can only understand about 30% of what she says. The remaining 70% is reserved for the Alzheimer’s residents who seem to understand everything.
Another wonderful thing is happening! Donna’s display of affection towards me is taking a different turn. While walking the hall, she stops – perhaps in the middle of a conversation. She puts her arm around me, squeezes me a little, looks up with her eyes sparkling, smiles and whispers, “Oh, Johnnie! I love you!” – then kisses me.
My heart does a leap! This expression of ‘love’ comes from her soul. It is not to be shared with her other gentleman friends.
I understand. The moment is brief but, for that moment, her lucidity is absolute. The expression is real. Her ‘love’ is still there. Ten minutes later, if I suggest we repeat that kiss, I will likely get the response, “What for? I just kissed you.”
Since that first exciting event, I have discovered that I do not have to wait for Donna to initiate her expression of love. By certain actions I take, like putting my arms around her and hugging her, like stroking her hair or commenting how pretty she looks, I can bring her briefly out of ‘Donna’s world’ into ‘our world’. Then I stop, look into her eyes, smile and say, “Oh, Donna. I love you!” just like she says to me. She responds with a big smile. Her eyes sparkle, and she squeezes me too. I have reached her soul!
And so I say this to you, Master Alzheimer, ‘rogue’, ‘devil’, ‘thief’. “You have done your worst, and I know you will claim the ultimate victory, but it will be hollow. You will have failed in your quest to find Donna’s soul and steal her love.”
I now know that, whatever the road ahead, our love for each other will remain.
It’s time to celebrate! The ‘real’ Donna-Jean is standing up!
