I want to share my story – as there are a lot of feelings that I have had that I've been deeply ashamed of, and I don’t think I should have been – or that anyone should be.
There is a lot of pressure on the carer, and on the family, to be positive, or even to focus on the loss – but no attention is given to any other emotions – anger, resentment, even relief. These get hidden, not talked about. And this can’t be healthy.
My mum was diagnosed with Alzheimer’s when I was 19. In fact, she had been diagnosed a year earlier, but had not wanted to tell me or my brother. She didn't even tell my dad for a while, I guess she didn't know how to say it, or wanted to comprehend it herself. I hope she never felt that she would be burdening us.
It always worried me – she used to say that she never wanted to end up in a care home. As a child we used to say jokingly ‘when we put you in the home’. Now I wish I had never made those jokes, because I know she would have hated to have been in a care home, relying on others, but sadly that’s where she ended up. It gives me a little comfort to think that perhaps by that point, she didn't know where she was. But ultimately, although my loving dad went to see her every day, she died alone. And I will always hold this tremendous guilt that I could have been there more.
Don’t get me wrong, I think the whole family did an amazing job at caring for my mother over the 10 year period that Alzheimer’s took over her body. For many years, life went on as normal, friends visited, family holiday were taken, we all laughed and cried. But the cloud of Alzheimer’s always hung over us, and the dread of knowing the path it was leading her down, hung heavily over all our heads.
It seems morbid to dwell on the negative moments, but those are the ones that stick in my heart, and from which I can’t escape:
I decided to take a gap year and travel to Australia. I was 21 and out of uni, and always had the bug to travel – it was a bug that I had got from my mum, and I had no doubt that this is what she wanted me to do. I never asked her directly, now I’m not sure why? Perhaps, she had reached the point where conversation was hard – I find it difficult now to remember when certain parts of her, and of our relationship were lost. So off I went, with the blessing of my family. For the most part, it was fine, I had an amazing time, and an experience I know that my mum had many years previous when she would travel. Her dreams were my dreams and I was living them.
About 6 months through the trip, on a regular call home, dad began to tell me that he was having difficulties. Mum was beginning to see things – she believed that there were little insects all over the house and that it was dirty. She was getting really distressed by it, angry with my dad for not being clean enough, and taking it out on him. I could tell from his voice that he was struggling to know what to do. The health advisor had been round, and everyone was reassuring her that the house was fine and there was nothing there, but she would not listen, or could not listen. It was tough on dad, but also tough on my mum - imagine what it must be like to live in a house (which, by this point, she couldn't leave on her own) and to feel that you were surrounded by little bugs, over which you had no control. And your husband and family are telling you that nothing is there – but you know that it is – a scary and frustrating thought. One day, an old friend popped round for a visit, and again said there was nothing there. For some reason, in this instance, it worked and my mum believed her - who knows why? My dad was filled with a mixture of emotion – relief that she was no longer suffering with this anguish – and him feeling the brunt of it! But also, despair – why would she not listen to him? He is the one caring for her every day, what has he done to not deserve her trust?
From so far away, I could offer little but words of comfort. This period really did highlight the distance that I felt in my heart from my family – was I doing the right thing by not being there?
Upon my return I was greeted at the airport by both mum and dad; it was so lovely to see them after all this time. On the way home my mum sat in the back with me and held my hand. But it was soon clear that this woman, sat beside me, was not the mother I had left behind the year previous. Her teeth chattered constantly – ‘she’s been doing that for a few months now’ my dad said; her knees jumped up and down. Her face was filled with a smile, so glad she was to see me, but her voice could not express the words she was feeling. Previous to the trip, I had seen my mother regularly which made any deterioration hard to spot, and even harder to pinpoint, but now - a year apart – the decline that she had suffered was a true shock. I don’t think I ever looked at her in quite the same way afterwards. I felt that when I left, she was my mother, who could look after me, and that when I returned, she was the woman whom I loved, but the woman who I was then to care for.
Years later, I took my mum to New York to see my brother who was living there at the time. We had travelled over in the May and had a good week looking around the city, and spending time with David. Over the summer it became clear that the opportunity to do such trips would not be around for long, so we booked to go again in September. This time travelling was tough, mum would not understand why we had to wait at the gate and complained constantly of being bored, she wanted to get up and walk around the plane all the time, much to the disgruntlement of the other passengers.
This was one thing that I found really tough with Alzheimer’s – the ‘sufferer’ almost reverts back to being a child – not understanding social graces, suffering from limited speech and ultimately reverting to primitive desires. With a child, people are forgiving, but with an adult declaring at the top of their voice on a packed plane, or in a supermarket queue that they ‘need to go for a poo’ – horrified stares would ensue. I would become embarrassed, flustered, and felt the need to apologise and explain. I realise know that I should have been prouder – who cares what anyone else thought – my priority should have been with my mum’s needs, not wallowing in my own shame.
As a treat in New York, we went to the Tavern on the Green (the fancy restaurant in Central Park) for lunch. I remember it well, as I had seen it in the movies and my dad had given us some extra cash to treat ourselves (he had stayed at home to get a well-earned break). During lunch, my mum and brother were talking about him as a child and she turned to me and said “so when did we meet?”. For that moment, she did not know that I was her child. Why was it that she remembered my brother, but not me? I was the one who saw her every day, who cared for her and who had brought her to New York. My eyes flooded with tears as I felt my heart dissolve in my chest. It was an unbearable pain. I looked around in desperation. Then my mum, seeing the pain on my face, had the realisation – the moment of ‘forgetfulness’ had passed and she realised what she had said. She couldn't speak – for she too now felt that pain. I got up from the table and went outside. She followed me out, apologising for what I know wasn't her fault and we sat crying and hugging in the park garden. I think it was probably worse for her than it was for me. But I will never forget that moment. I knew she wasn't too blame, but I was angry – it felt like I had given her so much and it had meant nothing – I was the first family member to be forgotten. Over the next few years, the inability to recognise what our connection was, or even who we were became more frequent, but as it did, the pain subsided. That moment had changed my life.
We returned from New York and I said to my dad that I couldn’t take her away again, it had become too hard – and I wasn’t sure that she really enjoyed it. That fateful trip marked the last time my mother would travel – something that defined her as a person, and indeed me.
I then went on to study in Bristol, a 2 hour train journey away. I would often come home at the weekend to look after mum whilst dad went away to have a break, or just to keep him company, as well as spending that precious time with my mum. Most of the time I was happy to do this, I wanted to support both my parents and enjoyed the time at home. However, sometimes I felt a different feeling, one that I’ve only recently began to realise is a natural one – and one that I want to share with others so that they don’t have to feel ashamed. I felt resentment. I didn’t want to give up my weekends at university to go home and sit in relative silence with my ill mother watching television all weekend – I wanted to be out with my friends. In later years when she was in hospital and then in a care home, this feeling grew worse – going to sit with her in a hospital ‘lounge’, not speaking and watching her and others struggle. I began to dread the visits, but went under the obligation that I had to visit my mother. I don’t think she knew I was there – by this point she could not speak or even feed herself. She was put on palliative care, and we were ultimately waiting for her to die. So each time I went, I would witness her shrinking away, becoming unrecognisable. There were a few glimmers of hope, sometimes – even though there had been no recognition for months – I would get a gleam of a smile or, one birthday, when I sang happy birthday to her, she suddenly joined in humming along to the tune! These are moments that I cherished and I was glad to share them with her. I was also glad to share the burden with my dad, but mostly, I hated every minute of it. And I hated myself for feeling like that. I became consumed with guilt, and too scared to tell anyone of my feelings. Now I wish I had, who knows, maybe others feel like that too? But, by keeping quiet, I don’t think I did the best for my mum, or for myself.
When finally she did pass away, 10 years after first being diagnosed, I cried for her. I cried for my family and I cried for myself. At the age of 26, I knew no-one else whose parent had died of dementia and found it difficult to relate my feelings to others. I did grieve for my mum, but I had also been grieving for a number of years previous. Each event above marked a distinct milestone in her journey with dementia and particularly for me and the way I dealt with it. By the time she did pass, I was also met with relief. Her pain was over. I believe with every ounce of my being that she would have desperately hated her last few years, having to be fed, wearing a nappy, living in a home – it brings me hope that she wasn't aware of any of this.
4 years on, I do miss her. When I recently got married, I did not have my mother there to share my day. Trying for a baby, I know that she won’t be the grandmother I know she would have loved to have been. But I lost her a long time ago, longer than most people realise. I hold her in my heart every day – I don’t feel the need to talk about it regularly, I don’t even feel the need to visit her gravestone that often – she is always in my thoughts and guides me in life. And every time I put my backpack on and board a plane, I think of her, and know that I am my mother’s daughter – that is how she would want me to remember her.
Mum, I love you and I’m sorry. I hope you understand.
There is a lot of pressure on the carer, and on the family, to be positive, or even to focus on the loss – but no attention is given to any other emotions – anger, resentment, even relief. These get hidden, not talked about. And this can’t be healthy.
My mum was diagnosed with Alzheimer’s when I was 19. In fact, she had been diagnosed a year earlier, but had not wanted to tell me or my brother. She didn't even tell my dad for a while, I guess she didn't know how to say it, or wanted to comprehend it herself. I hope she never felt that she would be burdening us.
It always worried me – she used to say that she never wanted to end up in a care home. As a child we used to say jokingly ‘when we put you in the home’. Now I wish I had never made those jokes, because I know she would have hated to have been in a care home, relying on others, but sadly that’s where she ended up. It gives me a little comfort to think that perhaps by that point, she didn't know where she was. But ultimately, although my loving dad went to see her every day, she died alone. And I will always hold this tremendous guilt that I could have been there more.
Don’t get me wrong, I think the whole family did an amazing job at caring for my mother over the 10 year period that Alzheimer’s took over her body. For many years, life went on as normal, friends visited, family holiday were taken, we all laughed and cried. But the cloud of Alzheimer’s always hung over us, and the dread of knowing the path it was leading her down, hung heavily over all our heads.
It seems morbid to dwell on the negative moments, but those are the ones that stick in my heart, and from which I can’t escape:
I decided to take a gap year and travel to Australia. I was 21 and out of uni, and always had the bug to travel – it was a bug that I had got from my mum, and I had no doubt that this is what she wanted me to do. I never asked her directly, now I’m not sure why? Perhaps, she had reached the point where conversation was hard – I find it difficult now to remember when certain parts of her, and of our relationship were lost. So off I went, with the blessing of my family. For the most part, it was fine, I had an amazing time, and an experience I know that my mum had many years previous when she would travel. Her dreams were my dreams and I was living them.
About 6 months through the trip, on a regular call home, dad began to tell me that he was having difficulties. Mum was beginning to see things – she believed that there were little insects all over the house and that it was dirty. She was getting really distressed by it, angry with my dad for not being clean enough, and taking it out on him. I could tell from his voice that he was struggling to know what to do. The health advisor had been round, and everyone was reassuring her that the house was fine and there was nothing there, but she would not listen, or could not listen. It was tough on dad, but also tough on my mum - imagine what it must be like to live in a house (which, by this point, she couldn't leave on her own) and to feel that you were surrounded by little bugs, over which you had no control. And your husband and family are telling you that nothing is there – but you know that it is – a scary and frustrating thought. One day, an old friend popped round for a visit, and again said there was nothing there. For some reason, in this instance, it worked and my mum believed her - who knows why? My dad was filled with a mixture of emotion – relief that she was no longer suffering with this anguish – and him feeling the brunt of it! But also, despair – why would she not listen to him? He is the one caring for her every day, what has he done to not deserve her trust?
From so far away, I could offer little but words of comfort. This period really did highlight the distance that I felt in my heart from my family – was I doing the right thing by not being there?
Upon my return I was greeted at the airport by both mum and dad; it was so lovely to see them after all this time. On the way home my mum sat in the back with me and held my hand. But it was soon clear that this woman, sat beside me, was not the mother I had left behind the year previous. Her teeth chattered constantly – ‘she’s been doing that for a few months now’ my dad said; her knees jumped up and down. Her face was filled with a smile, so glad she was to see me, but her voice could not express the words she was feeling. Previous to the trip, I had seen my mother regularly which made any deterioration hard to spot, and even harder to pinpoint, but now - a year apart – the decline that she had suffered was a true shock. I don’t think I ever looked at her in quite the same way afterwards. I felt that when I left, she was my mother, who could look after me, and that when I returned, she was the woman whom I loved, but the woman who I was then to care for.
Years later, I took my mum to New York to see my brother who was living there at the time. We had travelled over in the May and had a good week looking around the city, and spending time with David. Over the summer it became clear that the opportunity to do such trips would not be around for long, so we booked to go again in September. This time travelling was tough, mum would not understand why we had to wait at the gate and complained constantly of being bored, she wanted to get up and walk around the plane all the time, much to the disgruntlement of the other passengers.
This was one thing that I found really tough with Alzheimer’s – the ‘sufferer’ almost reverts back to being a child – not understanding social graces, suffering from limited speech and ultimately reverting to primitive desires. With a child, people are forgiving, but with an adult declaring at the top of their voice on a packed plane, or in a supermarket queue that they ‘need to go for a poo’ – horrified stares would ensue. I would become embarrassed, flustered, and felt the need to apologise and explain. I realise know that I should have been prouder – who cares what anyone else thought – my priority should have been with my mum’s needs, not wallowing in my own shame.
As a treat in New York, we went to the Tavern on the Green (the fancy restaurant in Central Park) for lunch. I remember it well, as I had seen it in the movies and my dad had given us some extra cash to treat ourselves (he had stayed at home to get a well-earned break). During lunch, my mum and brother were talking about him as a child and she turned to me and said “so when did we meet?”. For that moment, she did not know that I was her child. Why was it that she remembered my brother, but not me? I was the one who saw her every day, who cared for her and who had brought her to New York. My eyes flooded with tears as I felt my heart dissolve in my chest. It was an unbearable pain. I looked around in desperation. Then my mum, seeing the pain on my face, had the realisation – the moment of ‘forgetfulness’ had passed and she realised what she had said. She couldn't speak – for she too now felt that pain. I got up from the table and went outside. She followed me out, apologising for what I know wasn't her fault and we sat crying and hugging in the park garden. I think it was probably worse for her than it was for me. But I will never forget that moment. I knew she wasn't too blame, but I was angry – it felt like I had given her so much and it had meant nothing – I was the first family member to be forgotten. Over the next few years, the inability to recognise what our connection was, or even who we were became more frequent, but as it did, the pain subsided. That moment had changed my life.
We returned from New York and I said to my dad that I couldn’t take her away again, it had become too hard – and I wasn’t sure that she really enjoyed it. That fateful trip marked the last time my mother would travel – something that defined her as a person, and indeed me.
I then went on to study in Bristol, a 2 hour train journey away. I would often come home at the weekend to look after mum whilst dad went away to have a break, or just to keep him company, as well as spending that precious time with my mum. Most of the time I was happy to do this, I wanted to support both my parents and enjoyed the time at home. However, sometimes I felt a different feeling, one that I’ve only recently began to realise is a natural one – and one that I want to share with others so that they don’t have to feel ashamed. I felt resentment. I didn’t want to give up my weekends at university to go home and sit in relative silence with my ill mother watching television all weekend – I wanted to be out with my friends. In later years when she was in hospital and then in a care home, this feeling grew worse – going to sit with her in a hospital ‘lounge’, not speaking and watching her and others struggle. I began to dread the visits, but went under the obligation that I had to visit my mother. I don’t think she knew I was there – by this point she could not speak or even feed herself. She was put on palliative care, and we were ultimately waiting for her to die. So each time I went, I would witness her shrinking away, becoming unrecognisable. There were a few glimmers of hope, sometimes – even though there had been no recognition for months – I would get a gleam of a smile or, one birthday, when I sang happy birthday to her, she suddenly joined in humming along to the tune! These are moments that I cherished and I was glad to share them with her. I was also glad to share the burden with my dad, but mostly, I hated every minute of it. And I hated myself for feeling like that. I became consumed with guilt, and too scared to tell anyone of my feelings. Now I wish I had, who knows, maybe others feel like that too? But, by keeping quiet, I don’t think I did the best for my mum, or for myself.
When finally she did pass away, 10 years after first being diagnosed, I cried for her. I cried for my family and I cried for myself. At the age of 26, I knew no-one else whose parent had died of dementia and found it difficult to relate my feelings to others. I did grieve for my mum, but I had also been grieving for a number of years previous. Each event above marked a distinct milestone in her journey with dementia and particularly for me and the way I dealt with it. By the time she did pass, I was also met with relief. Her pain was over. I believe with every ounce of my being that she would have desperately hated her last few years, having to be fed, wearing a nappy, living in a home – it brings me hope that she wasn't aware of any of this.
4 years on, I do miss her. When I recently got married, I did not have my mother there to share my day. Trying for a baby, I know that she won’t be the grandmother I know she would have loved to have been. But I lost her a long time ago, longer than most people realise. I hold her in my heart every day – I don’t feel the need to talk about it regularly, I don’t even feel the need to visit her gravestone that often – she is always in my thoughts and guides me in life. And every time I put my backpack on and board a plane, I think of her, and know that I am my mother’s daughter – that is how she would want me to remember her.
Mum, I love you and I’m sorry. I hope you understand.
