In 2007 my dad died. I also realised that my mum had dementia. The best decision at the time was to bring her back to Ireland with me where I could look after her and keep her from the harm she would have been vulnerable to in South Africa. Sadly, within a year it became evident that her dementia was spiraling down into full-blown Altzheimer's Disease.
The first time she looked at me and said: "Where did we first meet?" I laughed and saw the humour in it. So did she. The second time, it hit me quite hard and I suppose I started saying goodbye to her from that moment on. It was to be a goodbye which lasted more than a decade.
This is just a taste of what life was like for those difficult years of our lives. I've finally reached a point where I can breathe and become a person again. Where I feel okay to look back and talk about it a bit. For so long our only conversation was mum. We knew nothing else. There was no room for anything else in our lives. That's just the way it was. Just life.
With steady progression we began to cope with her nightly wanderings, tip toe-ing around the house opening and closing doors and flicking lights on and off; with obsessions that people were peeping at her, leading to toilet paper stuffed in key holes and permanently closed bedroom curtains; to her insistence of a woman and little girl in the garden outside her bedroom window (no such couple were anywhere near to us); of little boys playing outside the bathroom window and the danger that they might peep in (no boys existed); she would pick fights with us, shouting obnoxiously if we tried to speak up for ourselves, accusing us of keeping her prisoner; she would apologise to guests for whatever it was she thought she had done wrong to make them hate her so much (which of course they didn't); we had to keep checking the rubbish bins to see what she had thrown out; being on edge if we took her anywhere in case she became loudly rude, with folk not understanding why; and the most difficult of all ... waking up in the morning to messages scrawled in bright red lipstick, on lengths of toilet paper in the bathroom, with the words "Help me" discernible, but not many other words written in recognisable letters.
We hid keys, installed baby gates, alarm mats and a baby monitor so we could hear if she was distressed during the night - or at any time really; Alan handled most of her physical cuts and bruises from too-thin skin, with incredible patience and care; I handled the twists and turns and storms of her mind and emotions; we learned how to wash her and dress her whilst maintaining her dignity; we helped her through forgetting which clothes to wear and how; we changed our concept of time because "now" means nothing to a brain which houses thunder and lightening (her words) rather than reason and logic; we spent hours calming her down from her mind's fantasies of horror and fear and loathing - mostly in the dark hours of the middle of the night when fear does its damndest and tiredness is at its heaviest; we made endless cups of tea whilst watching endless episodes of light TV programmes to keep her mind occupied - but often it was apparent she thought the fireplace was the TV so she wasn't taking anything in anyway; we walked miles in our own home going back and forth between her room to check on her and the place we were trying to do whatever it was we were trying to do; and we hugged a lot, to banish fears, to calm and reassure, to show love, and simply to calm all our nerves and try and find some sort of balance.
Many times I've read a "quote" which advocates never contradicting an Altzheimer's patient. It claims you should always agree with them, never point out their errors, love them unconditionally one hundred percent of the time and simply accept that they are the sole victim. I disagree with this. Yes, I understand fully the reason to show this kind of care, and I agree entirely to not argue a point with an Altzheimer's patient, but it does not take into account the carer who copes 24/7 with a constant barrage of negativity and unfounded accusations. It doesn't take into account that the carer is a victim of this cruel disease as well. On a daily basis we were told how awful we were, that we were jailers, and that we were trying to trick her into who knows what. That can wear you down at an incredible rate. You can begin to believe it all. You take it on as truth.
Instead, I developed a mantra which I would repeat, quietly but firmly, at those times of accusation. I would say over and over again: "No, we're not horrible people. We're nice people. We love you and we care for you". It worked for both of us at least some of the time. It stopped me from descending into a deep black pit of low self-esteem, it allowed me to maintain some sense of worth, and sometimes - just sometimes - it penetrated through the fug in mum's brain and she was able to apologise and calm down.
After close on ten years we had to admit that our own health was suffering badly and that we were becoming unable to be confident and capable carers, unable to cope with a disease which was bigger than we were. With an exhausted, numb and heavy heart I took mum across to live with my sister whilst we found a suitable home for her. Eighteen months later we swallowed hard on mixed emotions as she went into a home for what was to be the last three months of her life.
In early September 2018 it became apparent that mum was leaving this world. Within 24 hours of realising this, Alan had booked a ferry for me and I had driven from the coast of Brittany where we live to her bedside in Somerset in England.
I found her propped in a chair in the residents' lounge but it was immediately apparent that she needed to be safely tucked up in her bed from that moment on. She was unable to stand or walk unaided, was refusing food, and not able to swallow the nutritional supplement being offered. White "gunk" from the supplement was spilled all down her front and she was just a sunken body dwarfed in a large chair.
The nurses in the home taught me how to slowly feed her half-teaspoonfuls of water, keeping her hydrated for as long as possible, and I began the process of caring for her as I literally watched my precious mum starve to death. That's basically what happens with Altzheimer's. The body forgets how to function at all, obviously including eating and drinking.
I sat at her bedside for 8 days 14 hours a day, brushing her hair, keeping her dignity covered, feeding her water and sometimes her favourite Rooibos tea, whilst keeping her lips, face and hands moisturised with cream. Her eyes were still open for the first few days although I'm not sure how much of reality she was able to see for most of the time. Every now and then she would recognise me and hug my arm tight and close, leaving her head resting on my elbow. At one stage on the first day, she smiled brilliantly at me and said: "I thought I wasn't going to get the chance to say goodbye".
Amazingly, on day two the monsters of Altzheimers just seemed to fall away and she started talking .... and talking ... and talking .... for at least two hours solid. I realised that she was saying her goodbyes and immediately began recording her on my phone. I also called my sister in, thinking that mum might be gone within a few hours. However she talked herself into exhaustion and we slipped into another day.
Day three and the non-stop talking, with me recording, started again. More intensely this time and for almost the whole day. I was amazed at where she was finding the energy to continue, not having eaten for who knows how many days and only being fed half-teaspoonfuls of water at a time. Her throat was slowly forgetting how to swallow, so too much water at once could have literally choked and drowned her.
It's now ten months later and I haven't yet had the courage to fully listen to her voice on the recordings again but her words are strongly imprinted in my memory. She was happy and at peace with the fact that she was saying hello to "old friends and family" and goodbye to her daughters. Although not Catholic, she had spent a few very formative years at a Catholic school and that influence showed through strongly. Every few sentences were interspersed with crossing herself and parts of the Lords Prayer. This from the mum who had discouraged formal religious education in us because of the hypocrisy she felt people brought to it! I have the utmost respect though, for the values and open-mindedness she taught us to believe in and to live by. In that respect we could not have wanted for a better mother. She wasn't strong but she was solidly good, through and through.
She clutched my hand with unbelievable strength and every now and then stopped her flow of words to acknowledge another presence around her with a smile or a head nod. I was dying to know who she was seeing and acknowledging.
Twenty-six years previously I had been at the bedside of my 94 year old grandmother, her mother, and experienced a similar situation. Mum and I were sitting beside her and she (my grandmother) was glaring into the corner of the hospital room, shaking her head and saying "No! No!". I believe she was refusing to leave because we were there. Before we had reached home after that visiting time, the phone had rung to say she had passed on minutes after we left her bedside.
These last few days was an amazing time with mum. She was so happy ... at last, and I felt very privileged to be witnessing this part of her life. My mum had never been a fully happy person. Yes, she smiled and laughed and loved us, teased us and had fun a lot of the time, but she was emotionally dependent and fragile for my entire life, with a deep fear of loneliness and being alone.
After day three mum didn't open her eyes again - or if she did it was only briefly in a very unseeing way. So I never saw those lovely transparent blue eyes again.
Over the next few days she became more and more restless as the pain increased in her starving body and by the night of the fifth day it was necessary to start giving her injections to ease the pain. That part was very traumatic.
Any contact with her very patient nurses and carers was traumatic. Cleaning her, changing her and injecting her, all made her so afraid she screamed and fought them, lashing out fiercely but with little strength. I found it extremely upsetting so would leave the room and wait outside until they had finished. Thank heavens that on the first day my daughter Meghan had come down to be with me and to say goodbye to her granny. She gripped my hand tightly and we got through it together for that time. I missed Meghan sorely when she had to go.
The last few days were a stressful blur of traumatic physical needs, gentle talk and hair brushing to soothe her distressed soul, and simply hours of sitting there (getting pins and needles) holding her hand.
About half an hour before she finally "went aloft" she very gently removed my hand from hers and laid it on the bed next to her. I brushed her hair for the last time and, also very gently, she shrugged my hand from her shoulder and I took it to mean "Leave me now. Your physicality is holding me back. I'm going now."
And then she stopped breathing.
Study of "A Sunflower Greeting"
The first time she looked at me and said: "Where did we first meet?" I laughed and saw the humour in it. So did she. The second time, it hit me quite hard and I suppose I started saying goodbye to her from that moment on. It was to be a goodbye which lasted more than a decade.
This is just a taste of what life was like for those difficult years of our lives. I've finally reached a point where I can breathe and become a person again. Where I feel okay to look back and talk about it a bit. For so long our only conversation was mum. We knew nothing else. There was no room for anything else in our lives. That's just the way it was. Just life.
"The Scent of Rose"
Roses were mum's favourite flowers
With steady progression we began to cope with her nightly wanderings, tip toe-ing around the house opening and closing doors and flicking lights on and off; with obsessions that people were peeping at her, leading to toilet paper stuffed in key holes and permanently closed bedroom curtains; to her insistence of a woman and little girl in the garden outside her bedroom window (no such couple were anywhere near to us); of little boys playing outside the bathroom window and the danger that they might peep in (no boys existed); she would pick fights with us, shouting obnoxiously if we tried to speak up for ourselves, accusing us of keeping her prisoner; she would apologise to guests for whatever it was she thought she had done wrong to make them hate her so much (which of course they didn't); we had to keep checking the rubbish bins to see what she had thrown out; being on edge if we took her anywhere in case she became loudly rude, with folk not understanding why; and the most difficult of all ... waking up in the morning to messages scrawled in bright red lipstick, on lengths of toilet paper in the bathroom, with the words "Help me" discernible, but not many other words written in recognisable letters.
We hid keys, installed baby gates, alarm mats and a baby monitor so we could hear if she was distressed during the night - or at any time really; Alan handled most of her physical cuts and bruises from too-thin skin, with incredible patience and care; I handled the twists and turns and storms of her mind and emotions; we learned how to wash her and dress her whilst maintaining her dignity; we helped her through forgetting which clothes to wear and how; we changed our concept of time because "now" means nothing to a brain which houses thunder and lightening (her words) rather than reason and logic; we spent hours calming her down from her mind's fantasies of horror and fear and loathing - mostly in the dark hours of the middle of the night when fear does its damndest and tiredness is at its heaviest; we made endless cups of tea whilst watching endless episodes of light TV programmes to keep her mind occupied - but often it was apparent she thought the fireplace was the TV so she wasn't taking anything in anyway; we walked miles in our own home going back and forth between her room to check on her and the place we were trying to do whatever it was we were trying to do; and we hugged a lot, to banish fears, to calm and reassure, to show love, and simply to calm all our nerves and try and find some sort of balance.
Many times I've read a "quote" which advocates never contradicting an Altzheimer's patient. It claims you should always agree with them, never point out their errors, love them unconditionally one hundred percent of the time and simply accept that they are the sole victim. I disagree with this. Yes, I understand fully the reason to show this kind of care, and I agree entirely to not argue a point with an Altzheimer's patient, but it does not take into account the carer who copes 24/7 with a constant barrage of negativity and unfounded accusations. It doesn't take into account that the carer is a victim of this cruel disease as well. On a daily basis we were told how awful we were, that we were jailers, and that we were trying to trick her into who knows what. That can wear you down at an incredible rate. You can begin to believe it all. You take it on as truth.
Instead, I developed a mantra which I would repeat, quietly but firmly, at those times of accusation. I would say over and over again: "No, we're not horrible people. We're nice people. We love you and we care for you". It worked for both of us at least some of the time. It stopped me from descending into a deep black pit of low self-esteem, it allowed me to maintain some sense of worth, and sometimes - just sometimes - it penetrated through the fug in mum's brain and she was able to apologise and calm down.
"Evie"
Named after a great granddaughter
After close on ten years we had to admit that our own health was suffering badly and that we were becoming unable to be confident and capable carers, unable to cope with a disease which was bigger than we were. With an exhausted, numb and heavy heart I took mum across to live with my sister whilst we found a suitable home for her. Eighteen months later we swallowed hard on mixed emotions as she went into a home for what was to be the last three months of her life.
In early September 2018 it became apparent that mum was leaving this world. Within 24 hours of realising this, Alan had booked a ferry for me and I had driven from the coast of Brittany where we live to her bedside in Somerset in England.
I found her propped in a chair in the residents' lounge but it was immediately apparent that she needed to be safely tucked up in her bed from that moment on. She was unable to stand or walk unaided, was refusing food, and not able to swallow the nutritional supplement being offered. White "gunk" from the supplement was spilled all down her front and she was just a sunken body dwarfed in a large chair.
The nurses in the home taught me how to slowly feed her half-teaspoonfuls of water, keeping her hydrated for as long as possible, and I began the process of caring for her as I literally watched my precious mum starve to death. That's basically what happens with Altzheimer's. The body forgets how to function at all, obviously including eating and drinking.
I sat at her bedside for 8 days 14 hours a day, brushing her hair, keeping her dignity covered, feeding her water and sometimes her favourite Rooibos tea, whilst keeping her lips, face and hands moisturised with cream. Her eyes were still open for the first few days although I'm not sure how much of reality she was able to see for most of the time. Every now and then she would recognise me and hug my arm tight and close, leaving her head resting on my elbow. At one stage on the first day, she smiled brilliantly at me and said: "I thought I wasn't going to get the chance to say goodbye".
Amazingly, on day two the monsters of Altzheimers just seemed to fall away and she started talking .... and talking ... and talking .... for at least two hours solid. I realised that she was saying her goodbyes and immediately began recording her on my phone. I also called my sister in, thinking that mum might be gone within a few hours. However she talked herself into exhaustion and we slipped into another day.
Day three and the non-stop talking, with me recording, started again. More intensely this time and for almost the whole day. I was amazed at where she was finding the energy to continue, not having eaten for who knows how many days and only being fed half-teaspoonfuls of water at a time. Her throat was slowly forgetting how to swallow, so too much water at once could have literally choked and drowned her.
It's now ten months later and I haven't yet had the courage to fully listen to her voice on the recordings again but her words are strongly imprinted in my memory. She was happy and at peace with the fact that she was saying hello to "old friends and family" and goodbye to her daughters. Although not Catholic, she had spent a few very formative years at a Catholic school and that influence showed through strongly. Every few sentences were interspersed with crossing herself and parts of the Lords Prayer. This from the mum who had discouraged formal religious education in us because of the hypocrisy she felt people brought to it! I have the utmost respect though, for the values and open-mindedness she taught us to believe in and to live by. In that respect we could not have wanted for a better mother. She wasn't strong but she was solidly good, through and through.
She clutched my hand with unbelievable strength and every now and then stopped her flow of words to acknowledge another presence around her with a smile or a head nod. I was dying to know who she was seeing and acknowledging.
Twenty-six years previously I had been at the bedside of my 94 year old grandmother, her mother, and experienced a similar situation. Mum and I were sitting beside her and she (my grandmother) was glaring into the corner of the hospital room, shaking her head and saying "No! No!". I believe she was refusing to leave because we were there. Before we had reached home after that visiting time, the phone had rung to say she had passed on minutes after we left her bedside.
These last few days was an amazing time with mum. She was so happy ... at last, and I felt very privileged to be witnessing this part of her life. My mum had never been a fully happy person. Yes, she smiled and laughed and loved us, teased us and had fun a lot of the time, but she was emotionally dependent and fragile for my entire life, with a deep fear of loneliness and being alone.
After day three mum didn't open her eyes again - or if she did it was only briefly in a very unseeing way. So I never saw those lovely transparent blue eyes again.
Over the next few days she became more and more restless as the pain increased in her starving body and by the night of the fifth day it was necessary to start giving her injections to ease the pain. That part was very traumatic.
Any contact with her very patient nurses and carers was traumatic. Cleaning her, changing her and injecting her, all made her so afraid she screamed and fought them, lashing out fiercely but with little strength. I found it extremely upsetting so would leave the room and wait outside until they had finished. Thank heavens that on the first day my daughter Meghan had come down to be with me and to say goodbye to her granny. She gripped my hand tightly and we got through it together for that time. I missed Meghan sorely when she had to go.
The last few days were a stressful blur of traumatic physical needs, gentle talk and hair brushing to soothe her distressed soul, and simply hours of sitting there (getting pins and needles) holding her hand.
About half an hour before she finally "went aloft" she very gently removed my hand from hers and laid it on the bed next to her. I brushed her hair for the last time and, also very gently, she shrugged my hand from her shoulder and I took it to mean "Leave me now. Your physicality is holding me back. I'm going now."
And then she stopped breathing.
