Dementia Support Line
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My husband was eventually diagnosed in May 2019 with FTD(early onset dementia).
He struggled to accept the diagnosis and the fact he could no longer drive. He became...
This is a terrible disease, not only for the sufferer but I think even more for the carer and close Family members, one has to plan your day around the sufferer. I...
Diagnosed in 1998 with Parkinson’s my husband who...
My story is two fold in that I was diagnosed with M.S. in my early 20's. My husband became my full-time carer in the early 90's.
We started to notice that his memory...
You will never feel so helpless and alone in your life. I even found the so called professionals not very helpful. The social services, local and county, NHS etc do...
I am a retired health professional. My mother used tell me about her mother who was developing dementia in her late seventies and how she struggled to keep her safe,...
My relationship with Dementia is threefold. I lost my mother to dementia in 2020 and wasn't permitted to go to her funeral because of my own medical vulnerability. ...
It’s not the long goodbye that people tell you it...
My name is Graham, I am now 82 years old. and I am...
My dad has got vascular dementia he was diagnosed...
My husband Mick was diagnosed with Parkinson's...
My mother died with dementia, my two sibs also....
My husband was eventually diagnosed in May 2019 with FTD(early onset dementia).
He struggled to accept the diagnosis and the fact he could no longer drive. He became very frustrated over this & would contact the DVLA & local GP constantly over this.
During this time we had very little support and when Covid arrived this was cut altogether. He became more aggressive as his movements and outings became limited and was eventually sectioned in April 2020.
He obviously could not be visited by myself and family due to the rules and he became more difficult. He was transferred to a different setting & then caught Covid when he was admitted to hospital due to becoming de-hydrated & refusing food. After being sent from one place to another and told he would die soon, I requested he be sent home for us as a family to take care if him with help if some lovely carers and nurses from our local hospice. My husband died 10 days after coming home, on Father's Day 2020. Our wish is for the government & GPs to provide more support and resources not only for the dementia patient but also practicle advice and support for the family too.
He struggled to accept the diagnosis and the fact he could no longer drive. He became very frustrated over this & would contact the DVLA & local GP constantly over this.
During this time we had very little support and when Covid arrived this was cut altogether. He became more aggressive as his movements and outings became limited and was eventually sectioned in April 2020.
He obviously could not be visited by myself and family due to the rules and he became more difficult. He was transferred to a different setting & then caught Covid when he was admitted to hospital due to becoming de-hydrated & refusing food. After being sent from one place to another and told he would die soon, I requested he be sent home for us as a family to take care if him with help if some lovely carers and nurses from our local hospice. My husband died 10 days after coming home, on Father's Day 2020. Our wish is for the government & GPs to provide more support and resources not only for the dementia patient but also practicle advice and support for the family too.
Kim
This is a terrible disease, not only for the sufferer but I think even more for the carer and close Family members, one has to plan your day around the sufferer. I live in a fairly rural area, the only town with decent shops being some distance away. I could not go shopping alone, as I always had to,take my dearest late wife with me, in case she wandered off or hurt herself whilst alone. She was unable to even put her seat belt on without assistance. She fell out of bed once and cut her head, I called for assistance and a couple of paranurses arrive. Due to her head injury it was decided to take her to hospital to have an x ray. She never came out, dying in hospital. It was time of Covid, so I could not even visit her, until the very end. She eventually died, I holding her hand. I miss her very much, and always will
Michael
Diagnosed in 1998 with Parkinson’s my husband who retired from university lecturing in 2004 ran our retirement business until 2015. When Lewy body dementia set in but didn’t become really evident until he was confined during COVID. I protested with Alzheimer’s at the time because it did so much damage.. (On Skye news).
The picture shows the isolation they experience. It was taken at a joyful garden party where everyone else was chatting. We took a lot of pictures which tell that story. Which we could share if you wanted.
My husband can’t speak, move and is locked into his own thoughts. Or recognise me..
Our fight to get government funding CHC has taken 10 years and we have sold everything £650,000 before we had funding.
The picture shows the isolation they experience. It was taken at a joyful garden party where everyone else was chatting. We took a lot of pictures which tell that story. Which we could share if you wanted.
My husband can’t speak, move and is locked into his own thoughts. Or recognise me..
Our fight to get government funding CHC has taken 10 years and we have sold everything £650,000 before we had funding.
Paula
My story is two fold in that I was diagnosed with M.S. in my early 20's. My husband became my full-time carer in the early 90's.
We started to notice that his memory was getting worse and he was diagnosed with Early Onset Dementia in the mid 2010's.
His memory continues to deteriorate and his walking has deteriorated into an extremely slow shuffle to where he is unsafe to go out alone.
I feel we have terrible trouble getting the support we need and that's very frustrating. I constantly feel as though I'm banging my head against a brick wall.
After over 40 years of marriage I have trouble seeing where we will be in 5 years time - the future looks extremely bleak.
We started to notice that his memory was getting worse and he was diagnosed with Early Onset Dementia in the mid 2010's.
His memory continues to deteriorate and his walking has deteriorated into an extremely slow shuffle to where he is unsafe to go out alone.
I feel we have terrible trouble getting the support we need and that's very frustrating. I constantly feel as though I'm banging my head against a brick wall.
After over 40 years of marriage I have trouble seeing where we will be in 5 years time - the future looks extremely bleak.
Linda
You will never feel so helpless and alone in your life. I even found the so called professionals not very helpful. The social services, local and county, NHS etc do not coordinate. If you are lucky enough to receive CHC it is not enough for private care homes. Social services are not able to recommend care homes so how do you choose one. Care homes do not advertise their fees so you have to approach each one.
john
I am a retired health professional. My mother used tell me about her mother who was developing dementia in her late seventies and how she struggled to keep her safe, whilst caring for my brother as a young child. My mother was a war widow and it was a very hard time financially, however her mother was eventually admitted to a care home. Moving on to the present day, and my dear brother who is 4 years older than me, is in a care home with dementia. Around twenty years ago my mother’s widowed sister began to mentally decline and I moved her to a home nearby. I managed to get power of attorney and her money was nearly all gone on her care when she passed away. My mother’s care took everything. My dear husband passed away in hospital from pneumonia after I begged the consultant not to send him to a home. My question of any government now is when oh when are you going pay attention to this worsening situation and support the suffering and their families properly. When my husband was admitted to hospital his consultant asked me how on earth had I coped. I said I’m a nurse! But eventually I had to give in.
Sylvia
My relationship with Dementia is threefold. I lost my mother to dementia in 2020 and wasn't permitted to go to her funeral because of my own medical vulnerability. This was a hard concept to not physically say goodbye to my mother. It was hard when I knew the end was near 'talking' to her on skype arranged by my sister and saying these words to her "Mum I'm fine, I love you and thank you for caring for me so well but you need to go now, you have done your best and have led a great life', love you."
The next morning, I received a phone call from the same sister to say that she had passed away. The guilt I feel to this day in what I said during my final words to my mother. I feel that I made her mind up for her. The guilt I feel that I caused my siblings to be without their mother. I now realise that this was not the case but initially I couldn't see it any other way.
I am naturally frightened for myself as Dementia is rife in our family, with my mother’s sister passing away with Dementia years ago, then her brother passing away with Dementia before my mother. Coupled together with the fact that I am living with physical needs and realise, that those who are elderly and have problems with engaging either physically or verbally with people, are more likely to develop Dementia. I am already showing Dementia traits and am trying to keep myself busy and not cause stress to my siblings of which I am the oldest.
It is hard and the Government have to realise that no one is immune from Dementia. Dementia does not bypass the most effluent members of society, but effects all regardless of ethnicity, gender, religious preferences, poor, homeless, unemployed and the list goes on.
The government needs to put all their resources into combating this awful illness, if not we could become a society of people living with Dementia and this would undoubtedly be sad and have a detrimental effect on our ability to function as a society.
Thank you for your time.
The next morning, I received a phone call from the same sister to say that she had passed away. The guilt I feel to this day in what I said during my final words to my mother. I feel that I made her mind up for her. The guilt I feel that I caused my siblings to be without their mother. I now realise that this was not the case but initially I couldn't see it any other way.
I am naturally frightened for myself as Dementia is rife in our family, with my mother’s sister passing away with Dementia years ago, then her brother passing away with Dementia before my mother. Coupled together with the fact that I am living with physical needs and realise, that those who are elderly and have problems with engaging either physically or verbally with people, are more likely to develop Dementia. I am already showing Dementia traits and am trying to keep myself busy and not cause stress to my siblings of which I am the oldest.
It is hard and the Government have to realise that no one is immune from Dementia. Dementia does not bypass the most effluent members of society, but effects all regardless of ethnicity, gender, religious preferences, poor, homeless, unemployed and the list goes on.
The government needs to put all their resources into combating this awful illness, if not we could become a society of people living with Dementia and this would undoubtedly be sad and have a detrimental effect on our ability to function as a society.
Thank you for your time.
Carla
It’s not the long goodbye that people tell you it is. Well not for me anyway. It’s short sharp bursts of intense pain a couple of days of stress and suffering then the realisation that another part of my life as I know it has disintegrated. Has fallen by the wayside and I’m unable to pick it up no matter how much I want and need to. Then just as suddenly a plateau…. Need to do….need to change….need to adapt …. a 100 miles per second realisation that the woman I love most in the whole world needs me to step up again, to change what I do, to change how I think, to change how I act, to change how I react. Jo can’t do this without me and I don’t want to do this without her. No time now for tears, no time now for regrets, no time now……
How did it start I don’t know…. When did it start I don’t know….. why did it start I don’t know. I just don’t know what I don’t know. But I do know it’s the start of many iterations.
Coping strategies are there any…. Stress strategies are there any…..emotional turmoil strategies are there any…. I don’t even have time to think of them let alone implement them.
So that said my journey into the unknown, unwanted and unwelcome began well before I even recognised it.
Was I naive, was I not wanting to see it, was I afraid? Well it’s safe to say I was scared not just of the diagnosis but what I envisaged dementia was.
Let’s go back to late 2017, small, minor unrecognisable changes in Jo’s behaviour, her thought processes, her understanding. Completely and utterly missed by me. Or was it? Looking back….. isn’t hindsight a wonderful thing…. I’d logged it in my head all these subtle almost inconsequential changes but buried them in the vaults, door slammed, locks engaged. They are not getting out into my psyche under any circumstances.
And so it began
Stagger forward to 2018 and the knowledge but no realisation that things in Jo’s world but not mine were changing, developing into a new and different world where logic was banned and indifference abounded. Yet still I was locking it all in that vault. If I didn’t acknowledge it then it wasn’t happening.
Then bang out of the blue the short, sharp, slap in the face that suddenly opened that Pandora’s box of a vault. No longer locked, no longer closed that door was well and truely open for me and the rest of the world to see.
Jo had gone to see some friends and claimed there were men in our house trying to steal her money and being not nice. Our friends called me and I went straight round still without any real inclination of what was to come. Val took me to one side and said…. I don’t think you’ll like what I have to say but…., we think Jo has dementia.
Bang…, Whoa,…,, what….. I mean. OMG you are so right. And with that the first of many losses, grieving and goodbyes raised their ugly, unwanted, tainted with despair, heads. A bolt from the blue, a leg wobbling, thought provoking moment in time which little did I know then would repeat itself time and time again. A relentless, unfeeling, unfiltered, unforgiving emotional turmoil had begun and I had, after long last had to Acknowledge it. This darn smiling viper had made its first attack and bitten me sharply, I had no way of responding to it.
Despair, worry, anxiety, stress and loneliness were all I could think of. My own stupidity whirling around my head like a funfair ride. How did I not… how could I not…. Why didn’t I….why…. Why….. Why.
Incessant
And so it began again…..
That first taste of loss, that first taste of goodbye, that first taste of grief.
Loss. What had I lost I wasn’t sure, I knew I’d lost something or had I just misplaced it. No idea definitely lost something. How frustrating, I don’t know what I’ve lost yet I can feel it in my heart. But wait, I don’t sense it in my head, what is this emotion vs feeling vs logical head. The dimmed light became brighter, still dull but there nonetheless. I was losing my one true love, my life, my everything. It shattered me.
My first goodbye commenced its own journey holding hands with loss and skipping along without a care for me and my other emotions. I had to say goodbye to my beloved wife, how do I do that, why should I do that.
My first taste of that bitterness otherwise known as grief.
ah well that’s it then.
But it wasn’t.
I was soon to learn that grief has no bounds that there is not one grief but many facets. It’s not a journey it’s a whole series of different ways to grieve each with its own uncontrollable, unconditional facets. Each so different from the last it strikes and breaks you when you least expect it. My first teetering steps into the abyss.
Grief was running to catch up with and enjoy its friendship with loss and goodbye. They left me crumpled by the road side with my one last friend…. Desolation….thats all I had left to hang onto to but I could’ve done without.
Jo’s dementia journey and of course mine too took so many twists and turns, forks in the road and dead ends it was incomprehensible. Then another milestone. The three stooges stopped, turned and shot me down where I stood.
Can it really be 2019 already. I need to capture the wish list Jo had and do everything she longed for in her previous loving, caring life that she hadn’t achieved. I’ll teach those 3 emotions I thought they will not get the better of me or us. But they were too strong and had been eating away at my confidence and ability unbeknownst to me.
There we were Me with both Dr Jo and dementia Jo on a cruise. I never knew from one moment to the next which Jo I was with but I did know I had to keep the two apart in my head. I hated dementia Jo with a vengeance and loved Dr Jo with all my heart and soul. Keeping the two separate saved me from much anxt. I may hate the disease but I could still love my wife. Jo became lost and confused with monotonous regularity both on the ship and unfortunately on one occasion when we went ashore where she promptly disappeared.
Ha said the three stooges with one voice we’ve caught you out again. Don’t you know we act together but in a different way to what you expect…. Foolish man……. we change our appearance so we can take you by surprise and swiftly pull the rug from under your feet. You thought you knew loss, goodbye and grief but you didn’t recognise us because we’ve been joined by despair now. Ok ok I get it my loss this time was different it had taken my joint other half the one I knew and loved and changed the things she knew and did and loved. Goodbye jumped in and made me react with sorrow this time and grief took away my ability to offer Jo my safety. Don’t forget about me shouted despair I’ve made new friends , now take this and swiftly threw in my direction the cruelest cut of all…. My resolve and resilience.
March 2020 and lockdown looming I had to fight the now four musketeers. Jo needed me more than ever I had to get that diagnosis before everywhere shut down. I did it with a few minutes to spare. Relief consumed me but I had to wait until June for the confirmation of what I already knew. Fronto temporal lobe with Alzheimers. I thought I had got the better of my 4 adversaries, but of course they knew differently and prepared for a Christmas ambush.
I gingerly approached the festive period wearing my rose tinted glasses. Comforted by the fact I was struggling but coping no sign of the fierce four. It was going to be a traditional Christmas the first in many years. I wrapped the presents I’d bought for Jo and the ones I’d bought for myself, put them around the tree and felt almost good about our new lives.
Then out of nowhere Isolation joined in following a recruitment exercise. First strike in a short while. Encouraged by loss, goodbye and grief who had all morphed into new beings, isolation hit me with a sledgehammer. I hit rock bottom, and fell to my knees on the kitchen floor, loss joined in where had my life gone, goodbye swung a neat blow to the head Jo was going fast leaving me, grief stamped its heavy foot onto me, I was grieving now for the life I’d lost as well as the wife I’d lost, a double whammy. But they were not about to give up. For 45 minutes they poked and prodded, laughed and cajoled at how my world was crumbling around me until at last I admitted to the realisation that things would never be the same again. They all retreated smugly but still were only finished with me for now.
Lockdown gave them all free rein over me. Jo’s dementia journey continued unabated going off in all directions my adversaries taking advantage and ambushing me at every turn. Just as I thought I had a handle on Jo’s trajectory one or more of them would pop up and scupper me. Despair and isolation had joined forces to lead the pack but the others were there backing them up each and every step of the way. A different feeling of loss, of goodbye, of grief completely different from what had gone before. They laughed hysterically as I stumbled to understand, to grasp the same emotions but with different feelings and outcomes.
I was looking for fight and persistence to help me but they gave shallow and little comfort. Maybe they were spies in my camp, every time they seemed to set me up to fail.
2021 came and went. Kick a man when he’s down was the new approach and I took it, as exhaustion and stress joined the ever increasing team against me.
February 2022 saw my knight in shining armour appear by my side. Annie from the Alzheimer’s Society rode in on her white stallion charging through my adversaries. We talked about the dementia journey and diagnosis for so long I was convinced her ears would be bleeding. At last someone on my side, someone to listen, and more importantly someone to hear me. It’s difficult for anyone to understand what a lifeline that initial and subsequent conversations were for me. I could go back into battle with Annie supporting me unconditionally. The amazing grasp Annie had so quickly on what made me tick, what I needed and what I wanted to do allowed me to kick back at my adversaries and win some battles, although I knew I could not win the war. The encouragement and opportunities Annie gave and offered me including the start of my work with the BBC gave a sense of self worth, a confidence to help others , to shout about dementia from the rooftops. But it wasn’t just me. Jo too began to fight back with Annie helping and supporting her Jo found a new lease of life, Jo too had found a friend, someone to share her love of life with who would help her and me unconditionally. That input from AS continued when a video crew came to film our story. As I said at the time
“‘But now I’m typing with tears running down my face having watched the video 3 times. I love it. It’s so moving. You have caught the essence of our life together and delicately put it out for everyone to see in the most loving and carefully thought through way.
I wasn’t sure what to expect but this transcends anything I did think about.
Jo has just watched (we watched together so 4 times for me) and the emotion she displayed was incredible. She likes it too but maybe in a different way from me. Her feelings were palpable as she watched.
You made a lasting impression on Jo as she remembered you.
Thank you for such a professional job, it means such a lot to me to get people talking about Dementia and showing that life may be different but it’s not over after diagnosis and you’ve done that.”
Another boost for us both and a powerful push against adversity. As my involvement with various people from AS continued so I realised that my new found colleagues both national and local as I liked to call them were always there when I needed them. Offering help support and guidance. Allowing me to help campaign and influence whenever I can.
They all instinctively knew that the support Jo and I needed was not about joining groups or other activities but about advocacy and getting the world talking about dementia and that is what they provided by the bucket load.
Jump now to December 2022. My adversaries regrouped and took another assault. Jo’s mental and physical health went rapidly downhill and took mine with it. They came at me all guns blazing each of them outgunning the last. My AS cohort unable to stem the tide, as the vestiges of my resilience, resolve and resistance were destroyed along with my will to fight back.
Jo was dying and they each took what I thought would be one last blow. Loss, goodbye, grief, and despair banding together in yet another guise another set of emotions for me to deal with again different from those gone before. Only isolation admitted defeat thanks to Annie et al.
Jo left me. the sense of adversity overwhelming again so very different from each of the other stages.
But they were not giving up. To this day they all fight me with a war of attrition. The sense of each of them never far from me. Yes the loss is different, yes the goodbye is different, yes the grief is different but they are all still there changing each time.
So it’s not a journey or a cycle it’s a different emotion a different feeling and a different affect.
Thankyou AS for all you’ve done and continue to do for and with me a year on from Jo’s sad and untimely death.
How did it start I don’t know…. When did it start I don’t know….. why did it start I don’t know. I just don’t know what I don’t know. But I do know it’s the start of many iterations.
Coping strategies are there any…. Stress strategies are there any…..emotional turmoil strategies are there any…. I don’t even have time to think of them let alone implement them.
So that said my journey into the unknown, unwanted and unwelcome began well before I even recognised it.
Was I naive, was I not wanting to see it, was I afraid? Well it’s safe to say I was scared not just of the diagnosis but what I envisaged dementia was.
Let’s go back to late 2017, small, minor unrecognisable changes in Jo’s behaviour, her thought processes, her understanding. Completely and utterly missed by me. Or was it? Looking back….. isn’t hindsight a wonderful thing…. I’d logged it in my head all these subtle almost inconsequential changes but buried them in the vaults, door slammed, locks engaged. They are not getting out into my psyche under any circumstances.
And so it began
Stagger forward to 2018 and the knowledge but no realisation that things in Jo’s world but not mine were changing, developing into a new and different world where logic was banned and indifference abounded. Yet still I was locking it all in that vault. If I didn’t acknowledge it then it wasn’t happening.
Then bang out of the blue the short, sharp, slap in the face that suddenly opened that Pandora’s box of a vault. No longer locked, no longer closed that door was well and truely open for me and the rest of the world to see.
Jo had gone to see some friends and claimed there were men in our house trying to steal her money and being not nice. Our friends called me and I went straight round still without any real inclination of what was to come. Val took me to one side and said…. I don’t think you’ll like what I have to say but…., we think Jo has dementia.
Bang…, Whoa,…,, what….. I mean. OMG you are so right. And with that the first of many losses, grieving and goodbyes raised their ugly, unwanted, tainted with despair, heads. A bolt from the blue, a leg wobbling, thought provoking moment in time which little did I know then would repeat itself time and time again. A relentless, unfeeling, unfiltered, unforgiving emotional turmoil had begun and I had, after long last had to Acknowledge it. This darn smiling viper had made its first attack and bitten me sharply, I had no way of responding to it.
Despair, worry, anxiety, stress and loneliness were all I could think of. My own stupidity whirling around my head like a funfair ride. How did I not… how could I not…. Why didn’t I….why…. Why….. Why.
Incessant
And so it began again…..
That first taste of loss, that first taste of goodbye, that first taste of grief.
Loss. What had I lost I wasn’t sure, I knew I’d lost something or had I just misplaced it. No idea definitely lost something. How frustrating, I don’t know what I’ve lost yet I can feel it in my heart. But wait, I don’t sense it in my head, what is this emotion vs feeling vs logical head. The dimmed light became brighter, still dull but there nonetheless. I was losing my one true love, my life, my everything. It shattered me.
My first goodbye commenced its own journey holding hands with loss and skipping along without a care for me and my other emotions. I had to say goodbye to my beloved wife, how do I do that, why should I do that.
My first taste of that bitterness otherwise known as grief.
ah well that’s it then.
But it wasn’t.
I was soon to learn that grief has no bounds that there is not one grief but many facets. It’s not a journey it’s a whole series of different ways to grieve each with its own uncontrollable, unconditional facets. Each so different from the last it strikes and breaks you when you least expect it. My first teetering steps into the abyss.
Grief was running to catch up with and enjoy its friendship with loss and goodbye. They left me crumpled by the road side with my one last friend…. Desolation….thats all I had left to hang onto to but I could’ve done without.
Jo’s dementia journey and of course mine too took so many twists and turns, forks in the road and dead ends it was incomprehensible. Then another milestone. The three stooges stopped, turned and shot me down where I stood.
Can it really be 2019 already. I need to capture the wish list Jo had and do everything she longed for in her previous loving, caring life that she hadn’t achieved. I’ll teach those 3 emotions I thought they will not get the better of me or us. But they were too strong and had been eating away at my confidence and ability unbeknownst to me.
There we were Me with both Dr Jo and dementia Jo on a cruise. I never knew from one moment to the next which Jo I was with but I did know I had to keep the two apart in my head. I hated dementia Jo with a vengeance and loved Dr Jo with all my heart and soul. Keeping the two separate saved me from much anxt. I may hate the disease but I could still love my wife. Jo became lost and confused with monotonous regularity both on the ship and unfortunately on one occasion when we went ashore where she promptly disappeared.
Ha said the three stooges with one voice we’ve caught you out again. Don’t you know we act together but in a different way to what you expect…. Foolish man……. we change our appearance so we can take you by surprise and swiftly pull the rug from under your feet. You thought you knew loss, goodbye and grief but you didn’t recognise us because we’ve been joined by despair now. Ok ok I get it my loss this time was different it had taken my joint other half the one I knew and loved and changed the things she knew and did and loved. Goodbye jumped in and made me react with sorrow this time and grief took away my ability to offer Jo my safety. Don’t forget about me shouted despair I’ve made new friends , now take this and swiftly threw in my direction the cruelest cut of all…. My resolve and resilience.
March 2020 and lockdown looming I had to fight the now four musketeers. Jo needed me more than ever I had to get that diagnosis before everywhere shut down. I did it with a few minutes to spare. Relief consumed me but I had to wait until June for the confirmation of what I already knew. Fronto temporal lobe with Alzheimers. I thought I had got the better of my 4 adversaries, but of course they knew differently and prepared for a Christmas ambush.
I gingerly approached the festive period wearing my rose tinted glasses. Comforted by the fact I was struggling but coping no sign of the fierce four. It was going to be a traditional Christmas the first in many years. I wrapped the presents I’d bought for Jo and the ones I’d bought for myself, put them around the tree and felt almost good about our new lives.
Then out of nowhere Isolation joined in following a recruitment exercise. First strike in a short while. Encouraged by loss, goodbye and grief who had all morphed into new beings, isolation hit me with a sledgehammer. I hit rock bottom, and fell to my knees on the kitchen floor, loss joined in where had my life gone, goodbye swung a neat blow to the head Jo was going fast leaving me, grief stamped its heavy foot onto me, I was grieving now for the life I’d lost as well as the wife I’d lost, a double whammy. But they were not about to give up. For 45 minutes they poked and prodded, laughed and cajoled at how my world was crumbling around me until at last I admitted to the realisation that things would never be the same again. They all retreated smugly but still were only finished with me for now.
Lockdown gave them all free rein over me. Jo’s dementia journey continued unabated going off in all directions my adversaries taking advantage and ambushing me at every turn. Just as I thought I had a handle on Jo’s trajectory one or more of them would pop up and scupper me. Despair and isolation had joined forces to lead the pack but the others were there backing them up each and every step of the way. A different feeling of loss, of goodbye, of grief completely different from what had gone before. They laughed hysterically as I stumbled to understand, to grasp the same emotions but with different feelings and outcomes.
I was looking for fight and persistence to help me but they gave shallow and little comfort. Maybe they were spies in my camp, every time they seemed to set me up to fail.
2021 came and went. Kick a man when he’s down was the new approach and I took it, as exhaustion and stress joined the ever increasing team against me.
February 2022 saw my knight in shining armour appear by my side. Annie from the Alzheimer’s Society rode in on her white stallion charging through my adversaries. We talked about the dementia journey and diagnosis for so long I was convinced her ears would be bleeding. At last someone on my side, someone to listen, and more importantly someone to hear me. It’s difficult for anyone to understand what a lifeline that initial and subsequent conversations were for me. I could go back into battle with Annie supporting me unconditionally. The amazing grasp Annie had so quickly on what made me tick, what I needed and what I wanted to do allowed me to kick back at my adversaries and win some battles, although I knew I could not win the war. The encouragement and opportunities Annie gave and offered me including the start of my work with the BBC gave a sense of self worth, a confidence to help others , to shout about dementia from the rooftops. But it wasn’t just me. Jo too began to fight back with Annie helping and supporting her Jo found a new lease of life, Jo too had found a friend, someone to share her love of life with who would help her and me unconditionally. That input from AS continued when a video crew came to film our story. As I said at the time
“‘But now I’m typing with tears running down my face having watched the video 3 times. I love it. It’s so moving. You have caught the essence of our life together and delicately put it out for everyone to see in the most loving and carefully thought through way.
I wasn’t sure what to expect but this transcends anything I did think about.
Jo has just watched (we watched together so 4 times for me) and the emotion she displayed was incredible. She likes it too but maybe in a different way from me. Her feelings were palpable as she watched.
You made a lasting impression on Jo as she remembered you.
Thank you for such a professional job, it means such a lot to me to get people talking about Dementia and showing that life may be different but it’s not over after diagnosis and you’ve done that.”
Another boost for us both and a powerful push against adversity. As my involvement with various people from AS continued so I realised that my new found colleagues both national and local as I liked to call them were always there when I needed them. Offering help support and guidance. Allowing me to help campaign and influence whenever I can.
They all instinctively knew that the support Jo and I needed was not about joining groups or other activities but about advocacy and getting the world talking about dementia and that is what they provided by the bucket load.
Jump now to December 2022. My adversaries regrouped and took another assault. Jo’s mental and physical health went rapidly downhill and took mine with it. They came at me all guns blazing each of them outgunning the last. My AS cohort unable to stem the tide, as the vestiges of my resilience, resolve and resistance were destroyed along with my will to fight back.
Jo was dying and they each took what I thought would be one last blow. Loss, goodbye, grief, and despair banding together in yet another guise another set of emotions for me to deal with again different from those gone before. Only isolation admitted defeat thanks to Annie et al.
Jo left me. the sense of adversity overwhelming again so very different from each of the other stages.
But they were not giving up. To this day they all fight me with a war of attrition. The sense of each of them never far from me. Yes the loss is different, yes the goodbye is different, yes the grief is different but they are all still there changing each time.
So it’s not a journey or a cycle it’s a different emotion a different feeling and a different affect.
Thankyou AS for all you’ve done and continue to do for and with me a year on from Jo’s sad and untimely death.
Bill
My name is Graham, I am now 82 years old. and I am married (for 60 years now) to a wonderful French girl who I met on Broadstairs (UK) beach 62 years ago.
We live in the South of France., and have a one hectar ( 1.5 English acres) of garden on a sloping hill.
Two years ago (regrettably I always thought I was 18 not 80) I went down a steep slope to feed a little horse going by with it’s owner. I slipped on a hidden rock and fell 16 feet amongst the rocks. This necessitated in a a five hour op (right leg femur split in two vertically and broken hip).
Since then I have been diagnosed with Alzheimer's.
I have been prescribed Rivastigmine Arrow 9.5mg patches which I change every 24 hours. As this is a powerful treatment I have had to have a heart specialist check if my heart could cope with this. As I used to play lots of squash and football this was OK .
I find I do forget lots of things, but luckily have a very supportive wife. Within the next 3-5 years we will move back to to Broadstairs where we still own a flat.
All working life was spent (with IBM) as as a Systems Analyst/Programmer . I think it is essential for a someone with Alzheimer's to try try to keep as active and as positive as possible., which I do.
Best Regards to all other suffers
Graham
We live in the South of France., and have a one hectar ( 1.5 English acres) of garden on a sloping hill.
Two years ago (regrettably I always thought I was 18 not 80) I went down a steep slope to feed a little horse going by with it’s owner. I slipped on a hidden rock and fell 16 feet amongst the rocks. This necessitated in a a five hour op (right leg femur split in two vertically and broken hip).
Since then I have been diagnosed with Alzheimer's.
I have been prescribed Rivastigmine Arrow 9.5mg patches which I change every 24 hours. As this is a powerful treatment I have had to have a heart specialist check if my heart could cope with this. As I used to play lots of squash and football this was OK .
I find I do forget lots of things, but luckily have a very supportive wife. Within the next 3-5 years we will move back to to Broadstairs where we still own a flat.
All working life was spent (with IBM) as as a Systems Analyst/Programmer . I think it is essential for a someone with Alzheimer's to try try to keep as active and as positive as possible., which I do.
Best Regards to all other suffers
Graham
Graham
My dad has got vascular dementia he was diagnosed with it quite a few years ago now, slowly it took away his ability to walk and he is now in a nursing home and cannot walk at all bless him. We lost our mum to cancer 8 years ago and dad did try very hard to stay at home until he could no longer manage. I wish alot of people understood the way in which dementia affects people in different ways I love my dad so very much and would do anything for him not to have dementia.
Christine
My husband Mick was diagnosed with Parkinson's dementia when he was 62 but they thought this had been going on since his 40s, the symptoms were very subtle but it gathered pace quite quickly, all he had was a memory test and I was on my own, I cared for him alone and after many falls he was admitted to hospital and within two weeks he sadly passed away after 40 years together in hospital in 2021, I know how tough it is for carers,it is so lonely, nobody is there to see what a struggle it is to care for someone with dementia it is utterly heartbreaking to see the person you love slowly getting worse and slipping further away from reality, I felt this and I was left devastated with he left this world another sutistic,we need to be heard and listened to,we are supposed to be a forward thinking country, when will it change?, for all the the people who have this dreadful disease we must help them NOW! and their carers.
Yvonne
My mother died with dementia, my two sibs also. Around 10 years ago after cranial trauma and surgery, I re-learned how to live, while also experiencing increasing memory problems. I'm on dementia watch with my GP, but a more indepth assessment would help identify what is really going on. Can't get it. I'm more informed than most and active, pushing mind and body, so I stay on the margins, thus far. Investigation and diagnosis would help enormously. Life is good.
tony
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