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I’m hard of hearing, a life-long user of hearing...
Watching my nan slowly fade with dementia was more difficult than I could ever put into words. I felt so alone, like no one was listening. The last year of her life,...
My 80 year old Dad was diagnosed with Alzheimer’s in 2020 just after having a triple heart bypass.Dad lives alone and is very stubborn that he looks after himself,...
My mother suffered from Vascular Dementia for 3 years...
My wife, who devoted her life to being a carer for...
Dementia entered our lives 8 years ago. My grandma...
My grandma died in 2021 -in a care home during Covid...
I have been emotionally damaged by my experiences with my mum over the past 18 months.
Mum was diagnosed with dementia after an emergency hospital admission and...
My mother is 78 years old. 2 years ago she started to be a little forgetful, but nothing very concerning. In April this year, she left the UK for a holiday in Spain as...
My Beautiful Mum , after loads of messing around at hospitals; she was finally diagnosed with Dementia; I had 2 mothers from that day forward .The first one was my...
Losing our mum to cancer on New Year’s Day 2022 seemed like the cruelest blow my sister and I could have imagined but little did we know our dad’s illness would...
My dearest mother Joan died with dementia in 2015....
I’m hard of hearing, a life-long user of hearing aids and a couple of years ago, on retirement, I was lucky enough to be partnered with a beautiful sound support dog, Bert, trained by Hearing Dogs for Deaf People. One of the reasons we were partnered is that Bert is very calm and comfortable on public transport and I live in London. Every week or so we go to Bath by train to see my mum, who is living with dementia. She has her own flat in a Methodist Housing Association ‘Living with Care’ facility. Her sister also has a flat there.
My mum has had Alzheimer’s for over 12 years now. The care she receives is wonderful and she is clearly much loved. Luckily for us, she is happy and settled and seems to understand that in order to be safe, she needs to allow people to help her and accept some limitations of independence. She does this with remarkable good grace and retains a wonderful sense of humour and fun.
She doesn’t always remember me, but she adores Bert. Bert feels the same about her. When we go there, he gets increasingly excited and when we see her, his whole body wiggles with happiness. However, as a really well trained dog and a very gentle soul, he never jumps up but offers her his velvet nose and topknot mop for a cuddle as he enjoys her loving crooning.
Mum is 96. She literally gets on the floor to play with him (he has a couple of soft toys which live there). They both have a whale of a time playing tug’o’war and find the toy. Sometimes I have to help mum up afterwards which amuses her greatly.
Other residents where mum lives, some of whom are living with memory loss, also enjoy talking to and patting Bert and we have heard lots of stories of their long gone pets.
Last year she had a fall and broke her pelvis, and sadly she had to go to hospital.On visiting, it was heartbreaking to see her withdraw into herself as everything which was familiar and felt safe had disappeared. She wouldn’t look at anyone, talk or eat, and visits were heartbreaking. Very kindly, the hospital allowed me to bring Bert in (he is a sort of ‘Tier 2’ hearing dog, who, unlike a full jacketed hearing dog, does not have automatic legal access to places where pet dogs aren’t allowed).
Bert rushed up wiggling and wagging as usual but very quickly realised something was wrong. He instantly slowed down and really gently put his chin on her knee. He looked straight at her eyes, not dropping his gaze at all. They were like this for a few minutes. She reached for his head. Slowly, she met his face with hers and started caressing him and crooning. Within a few minutes, she was smiling and talking to me again.
Mum has always adored animals and it’s so nice to see that this part of her has never left her. Sometimes she sits beside Bert with her arm round him and asks me if I have a dog too. Their friendship is so special and lovely to see.
What I’ve learnt from this is that the role of contact with pets for those people living with dementia who have always loved animals shouldn’t be underestimated. .
My mum has had Alzheimer’s for over 12 years now. The care she receives is wonderful and she is clearly much loved. Luckily for us, she is happy and settled and seems to understand that in order to be safe, she needs to allow people to help her and accept some limitations of independence. She does this with remarkable good grace and retains a wonderful sense of humour and fun.
She doesn’t always remember me, but she adores Bert. Bert feels the same about her. When we go there, he gets increasingly excited and when we see her, his whole body wiggles with happiness. However, as a really well trained dog and a very gentle soul, he never jumps up but offers her his velvet nose and topknot mop for a cuddle as he enjoys her loving crooning.
Mum is 96. She literally gets on the floor to play with him (he has a couple of soft toys which live there). They both have a whale of a time playing tug’o’war and find the toy. Sometimes I have to help mum up afterwards which amuses her greatly.
Other residents where mum lives, some of whom are living with memory loss, also enjoy talking to and patting Bert and we have heard lots of stories of their long gone pets.
Last year she had a fall and broke her pelvis, and sadly she had to go to hospital.On visiting, it was heartbreaking to see her withdraw into herself as everything which was familiar and felt safe had disappeared. She wouldn’t look at anyone, talk or eat, and visits were heartbreaking. Very kindly, the hospital allowed me to bring Bert in (he is a sort of ‘Tier 2’ hearing dog, who, unlike a full jacketed hearing dog, does not have automatic legal access to places where pet dogs aren’t allowed).
Bert rushed up wiggling and wagging as usual but very quickly realised something was wrong. He instantly slowed down and really gently put his chin on her knee. He looked straight at her eyes, not dropping his gaze at all. They were like this for a few minutes. She reached for his head. Slowly, she met his face with hers and started caressing him and crooning. Within a few minutes, she was smiling and talking to me again.
Mum has always adored animals and it’s so nice to see that this part of her has never left her. Sometimes she sits beside Bert with her arm round him and asks me if I have a dog too. Their friendship is so special and lovely to see.
What I’ve learnt from this is that the role of contact with pets for those people living with dementia who have always loved animals shouldn’t be underestimated. .
Cecilia
Watching my nan slowly fade with dementia was more difficult than I could ever put into words. I felt so alone, like no one was listening. The last year of her life, people finally started to help. But this battle had been going on for 7 long years. The help they offered? Drugs that would sedate her enough so that she would just sit quietly, like a lifeless doll. Surely there is something better than that? The government need to do something. Because surely sedating dementia patients until they are like a zombie has a more detrimental effect on everyone involved. To me, that feels uncaring and inhuman. There must be another way.
My 80 year old Dad was diagnosed with Alzheimer’s in 2020 just after having a triple heart bypass.Dad lives alone and is very stubborn that he looks after himself, his flat and personal care started getting neglected and I battled with him to get help. I have managed to get care to come in three times a day although if I ask Dad if the ladies have come in he always says no. Unfortunately dad still doesn’t engage with his care team and has s health is declining I have for the last year been arguing with social care to help me get Dad into a nursing home so he will be safe but they still feel that a man who has left cigarettes burning on the floor put neck warmers in the toaster has room in the community. Dad pays for his care and would pay for a nursing home, I feel let down and constantly worried about what he will do next. There is such a lack of help for families trying to do the best for a loved one all you get is pushed from pillar to post and treated like you are being ignored.
The thought of putting Dad in a home was not an easy decision as I feel that I would be taking his freedom away but it’s what’s best and safe for him that matters.
The thought of putting Dad in a home was not an easy decision as I feel that I would be taking his freedom away but it’s what’s best and safe for him that matters.
My mother suffered from Vascular Dementia for 3 years & was in a Care Home.
She had a major fall & was transferred to hospital, where she was treated. After 2 weeks they transferred her back to the Carehome.
She had entered the final stage & had stopped eating. She passed away in my arms, as I tried to warm her emaciated skeleton of a body laid on the floor, as she had fallen out of bed many times.
Nobody deserves the humility & indignity she went through. 😢 😢
She had a major fall & was transferred to hospital, where she was treated. After 2 weeks they transferred her back to the Carehome.
She had entered the final stage & had stopped eating. She passed away in my arms, as I tried to warm her emaciated skeleton of a body laid on the floor, as she had fallen out of bed many times.
Nobody deserves the humility & indignity she went through. 😢 😢
My wife, who devoted her life to being a carer for others, succumbed to the long goodbye desires we think about ten years ago. It started with memory loss, now I can no longer look after her in the manner that she deserves, and she will live in a care home from next week.
I am losing a life time friend and companion, and I have lost my foundations. Listen to the voices of the silent ones.
I am losing a life time friend and companion, and I have lost my foundations. Listen to the voices of the silent ones.
Dementia entered our lives 8 years ago. My grandma passed away recently on 21/09/2024, however Dementia took her away many years before. I mourned my grandma for years. The day she asked me who I was, was the day the grieving process started. Now she has passed, the family feel guilty. We somewhat wanted this, she wanted this because there were times she would beg God to take her. She was tired, she was fed up and she was in pain. Mentally and physically. Grandma is now pain free and looking down on us, she knows exactly who we are again ❤️
The family fought with social workers, doctors, caregivers for what was best for my grandma, we put our trust in those we believe we could have trusted but unfortunately was failed by them. Specifically right at the end of her life. Governments need to put just as much time and effort into Dementia as they do with other charities, before my grandma had dementia and I lived through it, I never heard of it. Include dementia and the brain with dementia into education, science lessons and life lessons.
Because watching my mum grieve her mum, broke my heart over and over again for 8 years. And the reality of it is, our hearts are broken, but we are somewhat relieved. She has her quality of life back, it's just in the stars with grandad ✨️
The family fought with social workers, doctors, caregivers for what was best for my grandma, we put our trust in those we believe we could have trusted but unfortunately was failed by them. Specifically right at the end of her life. Governments need to put just as much time and effort into Dementia as they do with other charities, before my grandma had dementia and I lived through it, I never heard of it. Include dementia and the brain with dementia into education, science lessons and life lessons.
Because watching my mum grieve her mum, broke my heart over and over again for 8 years. And the reality of it is, our hearts are broken, but we are somewhat relieved. She has her quality of life back, it's just in the stars with grandad ✨️
My grandma died in 2021 -in a care home during Covid ( we were allowed to with her at this point) but had not seen her for many months.
The social strain on dementia - the impact on caring for grandma as my grandad was severely disabled their roles switched in the end. She used to look after him and then he became her carer. It was heartbreaking to see their struggle. Married for 65 years. The lack of local services and the evident my grandad felt when asked ""how Pam was" he didn't cope well. Nothing from the GP. Social care would throw carers for a short period of time if she needed respite etc. different carers everyday no consistency no dementia training. I could go on and on on.
The social strain on dementia - the impact on caring for grandma as my grandad was severely disabled their roles switched in the end. She used to look after him and then he became her carer. It was heartbreaking to see their struggle. Married for 65 years. The lack of local services and the evident my grandad felt when asked ""how Pam was" he didn't cope well. Nothing from the GP. Social care would throw carers for a short period of time if she needed respite etc. different carers everyday no consistency no dementia training. I could go on and on on.
I have been emotionally damaged by my experiences with my mum over the past 18 months.
Mum was diagnosed with dementia after an emergency hospital admission and subsequent discharge to a care home, previously she was living alone and independently. Because she has always objected to being in a care home and there is no power of attorney in place, social services appointed an advocate for a possible Court of Protection section 21a challenge to the DOLS. 18 months on this is still not resolved. I have also been wrangling with social services over Deputyship because someone needs to be appointed to manage mum's affairs formally and sell her flat. SS are insisting I apply to be Deputy despite me saying many times I don't feel able to take this huge amount of work on. If I don't do it the Council will have to, and they are very reluctant. While the flat can't be solved I have to deal with her bills, bank account, benefits, Council tax (she now has to pay Council tax for the first time, as she can't claim any exemptions as she is not living in the flat, but has been in the care home on a temporary contract for over a year!). This has been incredibly stressful for me and I am looking at another year of it because Deputyship is a long process. My life is on hold and mum is in limbo, and I feel barely human sometimes. All this while grieving my mum who I miss every day, but go to visit the remnants of her every week. Each visit is another loss.
Social services and the NHS have been ripped apart by successive neoliberal governments. Until we change the kind of people in charge of us, things will continue to deteriorate.
Mum was diagnosed with dementia after an emergency hospital admission and subsequent discharge to a care home, previously she was living alone and independently. Because she has always objected to being in a care home and there is no power of attorney in place, social services appointed an advocate for a possible Court of Protection section 21a challenge to the DOLS. 18 months on this is still not resolved. I have also been wrangling with social services over Deputyship because someone needs to be appointed to manage mum's affairs formally and sell her flat. SS are insisting I apply to be Deputy despite me saying many times I don't feel able to take this huge amount of work on. If I don't do it the Council will have to, and they are very reluctant. While the flat can't be solved I have to deal with her bills, bank account, benefits, Council tax (she now has to pay Council tax for the first time, as she can't claim any exemptions as she is not living in the flat, but has been in the care home on a temporary contract for over a year!). This has been incredibly stressful for me and I am looking at another year of it because Deputyship is a long process. My life is on hold and mum is in limbo, and I feel barely human sometimes. All this while grieving my mum who I miss every day, but go to visit the remnants of her every week. Each visit is another loss.
Social services and the NHS have been ripped apart by successive neoliberal governments. Until we change the kind of people in charge of us, things will continue to deteriorate.
My mother is 78 years old. 2 years ago she started to be a little forgetful, but nothing very concerning. In April this year, she left the UK for a holiday in Spain as a happy and healthy lady. 4 days into that holiday, she (in a matter of hours) was unable to recognise my Dad, where she was, or that she wasn't in the UK. On her return to the UK she was sent for numerous tests as a priority and 6 weeks later was diagnosed with Alzheimers and Vascular Dementia. Her deterioration continued at a rapid pace.
We vowed at the beginning to care for her at home, but 7 weeks later the Community Nursing team stepped in over concerns at my Father's health and mine as Mum's behaviour had become so challenging.
We were operating on 3 or 4 hours sleep per night for weeks and struggled to keep her safe. She would run into the road to get away from the people she didn't recognise and her home that she no longer recognised. She frequently thought she had been kidnapped by us which was incredibly frightening for her, or thought I (her daughter) was actually her Mum. There were too many incidents to mention but we were in a constant state of alert, worried what she would do next.
The nurses had arranged a Care Home place. The guilt was overwhelming. She has since deteriorated further but we also know the Care Home is the best place for her with wonderful staff.
Now, the hardest things to deal with are the delusions which she believes are very distressing memories, and her constant references to suicide. Both my Dad and I love her dearly, but this disease is so devastating I have no words to describe the depth of the hurt, the frustration and the hopelessness.
Sometimes we see flashes of my Mum but those are getting fewer and we're already grieving for a mother and wife who is still with us.
We vowed at the beginning to care for her at home, but 7 weeks later the Community Nursing team stepped in over concerns at my Father's health and mine as Mum's behaviour had become so challenging.
We were operating on 3 or 4 hours sleep per night for weeks and struggled to keep her safe. She would run into the road to get away from the people she didn't recognise and her home that she no longer recognised. She frequently thought she had been kidnapped by us which was incredibly frightening for her, or thought I (her daughter) was actually her Mum. There were too many incidents to mention but we were in a constant state of alert, worried what she would do next.
The nurses had arranged a Care Home place. The guilt was overwhelming. She has since deteriorated further but we also know the Care Home is the best place for her with wonderful staff.
Now, the hardest things to deal with are the delusions which she believes are very distressing memories, and her constant references to suicide. Both my Dad and I love her dearly, but this disease is so devastating I have no words to describe the depth of the hurt, the frustration and the hopelessness.
Sometimes we see flashes of my Mum but those are getting fewer and we're already grieving for a mother and wife who is still with us.
My Beautiful Mum , after loads of messing around at hospitals; she was finally diagnosed with Dementia; I had 2 mothers from that day forward .The first one was my Sparkly blue eyed mamma ; the second one was someone fragile ; shaky confused and talking to daffodils, I wanted to Laugh and Scream at the same .time. This wouldn’t have changed anything ; instead I listened and calmed her whilst she babbled on about being a little girl and where was her mum , then in an instant she would ask me if I wanted a cup of tea , Heaven forbid how she would make me one as she was at this stage in a lovely care home, It felt like we where in a living hell ; Dementia is the worse illness I have ever experienced, I lost my mum 3 times when she finally took her last breathes I felt that I had danced with dementia and until a loved one succumbs to this cruel disease you don’t know how you will feel , but I truly hope that whoever is reading this will never be in this position
Losing our mum to cancer on New Year’s Day 2022 seemed like the cruelest blow my sister and I could have imagined but little did we know our dad’s illness would completely swipe the rug from under us! At the time we knew something wasn’t right as his lack of empathy and understanding to our mums situation was baffling, from not letting nurses into the house to complaining about her laying in bed all day, our dad who had worshipped the ground she walked on had seemed to have changed overnight. After a long road of finally getting a diagnosis in 2022 the pressure it put on both us, our partners and our young families has taken its toll.
For the last 2 years we have became unpaid carers, managing the running of his house, cooking, shopping, managing his bills, dealing with GPs, banks, taking him to appointments, managing his personal care, liaising with services (energy suppliers, TV license, TV packages, insurance companies etc) all who make life difficult with need for paperwork before they can help him/us all this whilst holding down jobs and running our own homes. The strain this has had on all our lives has been devastating and for the love of our partners and children I’m unsure how I personally have made it through. The support of my employer and manager who have understood our situation and allowed me time to leave work for 20mins here and there to support him or go find him when he has wandered off or when he has been in need of support has been unwavering.
At times our empathy has turned to apathy and I have to constantly remind myself he is ill and it’s not his fault but I become riddled with guilt for feeling this way! In a strange way I thank god for taking my mum when he did as I wouldn’t have wanted her to be left to deal with this heartbreaking illness. My dad worked his whole life to support his family and now we are having to place him in a care home that I know will break his heart but I know its best for him as he is no longer safe and able to make correct decisions. There is a severe lack of support for families dealing with this cruel illness and more support is required from the top to bottom.
For the last 2 years we have became unpaid carers, managing the running of his house, cooking, shopping, managing his bills, dealing with GPs, banks, taking him to appointments, managing his personal care, liaising with services (energy suppliers, TV license, TV packages, insurance companies etc) all who make life difficult with need for paperwork before they can help him/us all this whilst holding down jobs and running our own homes. The strain this has had on all our lives has been devastating and for the love of our partners and children I’m unsure how I personally have made it through. The support of my employer and manager who have understood our situation and allowed me time to leave work for 20mins here and there to support him or go find him when he has wandered off or when he has been in need of support has been unwavering.
At times our empathy has turned to apathy and I have to constantly remind myself he is ill and it’s not his fault but I become riddled with guilt for feeling this way! In a strange way I thank god for taking my mum when he did as I wouldn’t have wanted her to be left to deal with this heartbreaking illness. My dad worked his whole life to support his family and now we are having to place him in a care home that I know will break his heart but I know its best for him as he is no longer safe and able to make correct decisions. There is a severe lack of support for families dealing with this cruel illness and more support is required from the top to bottom.
My dearest mother Joan died with dementia in 2015. She’d been diagnosed 5 years earlier. She lived an adventurous life, working in Morocco for the Red Cross and then as a GP in Hong Kong in the 1960-70’s. Adored by many, she was the life and soul of a party, intellectually curious and very well read. It was heartbreaking to see her loss of confidence and her confusion. She retained her charm and (mostly) stoicism until the end. But what a terrible burden for anyone to endure.
Alex
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Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?