The reality of dementia in lockdown

The impact of coronavirus has been shattering for families affected by dementia. Urgent action must be taken to better protect people ahead of the winter.

Dedicate a message to Government to make them address the reality of lockdown for people affected by dementia. 

Share your lockdown reality

Mum - I miss you more than you can know. In all my life I have never spent more than a week without seeing you. Only seeing you twice in 7 months has devastated me. I know you are safe and secure in your care home but this is time we can never get back. I love you more than you know.

24/10/2020
Thomas Truesdale

I work in a care home which has many people suffering from dementia. The residents don't understand what is going on but are depressed because they see so little of their spouses and children. However the visiting husbands and wives are suffering too. They are only allowed short 15 minute visits and must sit 2m apart. Their loved ones want their usual cuddles and can't understand why they can't touch their spouse. The government must address the issue and give relatives key worker status.

24/10/2020

I am begging this government to allow a family support bubble to be formed between care homes and their loved ones who have dementia . We have only seen my mum once since March and she has deteriorated so much that she is now in heart failure and i know part of this is because she has had no family contact. As a family we are distraught. please listen and do something quick 😢

24/10/2020

Martin is 58 with early onset Alzheimer's. The Home do a fantastic job but nothing can take the place of family, which Martin thrives on. Dementia is a long grieving processing losing your loved one over time and you grab every smile you can at this stage. We will never know if Martin feels lonely and that we have abandoned him though sometimes I see the hurt in his eyes. We will never get over the heartache this enforced separation has caused - it is a human rights issue. Please help us.

24/10/2020
My grandma

Ive seen my 95yr old grandma 2x this year. At Christmas she had a slight inclination of who I was, in September she didn't know me at all. Sitting behind a screen to visit her was better than not visiting at all, but I couldn't give her a hug or hold her hand. Speaking over the phone isn't an option. It breaks my heart to see the lady vascular dementia has changed her in to, and I miss the lady she was before. I want her to be kept safe, but at 95, I'm not sure how much longer I'll have her

24/10/2020
Our mother Joan

Please, please help. Our mother is 96 and bedbound having suffered with Alzheimer's for over 20 years. We can only communicate with her by touch & in very close proximity. We have not been able to do this for 7 months, even when the care home allowed us to visit outdoors in July, we couldn't get close enough so mum didn't know we were there. I'm dreading the day I get the call to say she has passed away.

24/10/2020
Jo Churchill MP

Dear Mrs. Churchill, Sally has Alzheimer's Disease. Her life has gradually become difficult & disturbing. Everyone is affected negatively by the Coronavirus epidemic & it is very sad situation. Those who have dementia are doubly affected. It is less easy to see friends & to keep up with family. The closure of dedicated local activities has meant a severe lessening of support. This means the sufferer is even more confined - the opposite of what is essentially needed.

24/10/2020

We lost our beautiful Mum at the beginning of the pandemic. She was in a nursing home and had dementia. The nursing home had been on lock down for weeks when Mum caught covid. I sat with my Mum for a week, alone on a covid ward, not able to be with family and saying goodbye to her alone. This government has forgotten our elderly in care homes, my heart is with you all who cannot see your loved ones. Lets hope you can be reunited soon xx

24/10/2020
Mr John Howe

I have now not seen my husband for 7 months in which time his condition has deteriorated. we have been mar ried for 40 years and never apart like so many others and believe there should be at least one person allowed to visit as a key worker in order to give some sort of normality stability and so that they at least recognise some part of their partner which lessens all the time as we know. It is very confusing for me so God knows what it does to the inmates who are cooped up 24/7 at the mo.

24/10/2020
My Mum!

At the moment life is tough, but so are WE!!

24/10/2020

Boris please help us be able to visit our loved ones locked away like prisoners in Care Homes Homes!!! I have already written a short story about our mum but feel I have to write again to say: whilst some Care Homes have opened for inside and garden visits the home in Newham remains closed for us family! This is having a huge impact on mum and our mental health!!! Safety is key, but a way must be found and we are getting no solid information when this home will open its doors again! HELP PLEASE

24/10/2020
My husband,Mike

My husband has vascular dementia and Alzheimer’s, also limited mobility. We have no car so relied on buses to get to the local shops twice a week. I don’t feel safe on public transport now so a walk to the shops at the bottom of the road is our ‘day out’. He is often verbally abusive and physically threatening. I get little sleep but have coped for the last six years with him and running our home. I now feel we could use some outside help but it is not available.

24/10/2020
My Dad

My father has had three mini strokes and 4 falls during lockdown and now his care home is evicting him as they cannot manage his needs without the daily 1:1 support that the family provided before lockdown. He has been rejected by 72 care homes due to his complex needs and still we get no adequate support from the health & social care system. We, like most families living with dementia desperately need help but the Government continues to ignore the health & social care crisis.

24/10/2020

My Dad is in a Nursing Home. When my Dad was diagnosed with Alzheimer’s we promised him ( my Mother and I ) would never abandon him. We last saw him on his 80th birthday on 16th August. Before that it was in March. At the garden visit, my Dad would not keep his distance from us and kept taking his mask off. He didn’t know or understand the rules for the Covid-19. It was heartbreaking! He is going to die from Alzheimer’s. We should be able to visit him in his room. He thinks we’ve abandoned him

24/10/2020
Mary Smith

The reality is before all this started although she spent a lot of time in her bedroom talking to the her friend in the mirror she would go out with me now she doesn’t want to go outside at tall so that Makes life a lot harder for me

24/10/2020
My lovely husband

Dear Jon Ashworth MP Leics Sth my husband had a seizure today I was unable to hug and comfort him, unable to see him, he must be scared and feel we’ve deserted him. I am broken hearted I cannot hold his hand let him know we love him dearly. I fear he his declining rapidly, I feel stressed every day. Please fight for us to see our loved ones.

23/10/2020
The Government

I care for my husband who has dementia and during lockdown I was unable to get my half day respite. My husband has suffered by not having any other company or activities to stimulate him.

23/10/2020
Jean

With thanks....

23/10/2020
Mrs Ella Lung

The lock-down has over-taken a social services deprivation of liberties, that the Ombudsman is investigating: double trouble! On 19 october 2020, at the care home, my frail impaired 95 year-old mother demanded her right to family life with her son. My 7th journal title quotes my mother from her phone conversations: So, You've Got A Prisoner Mother. https://www.smashwords.com/profile/view/democracyscience

23/10/2020

How sad to drop off toiletries for Mum today but not be able to see her. Haven't seen her in a month. I drove home in tears. Knowing how important every day is now, when Mum might still know who we are, its so sad to lose this time. Alzheimer's is taking her away from us and we are not able to make the most of being together. Love you Mum.

23/10/2020
Mavis Trought

Mum i really miss spending time with you. I'm praying you don't die alone without family around you. I wish I could see you and give you some comfort and stimulation. What is going to happen? For months we haven't been able to see you? How long is this going to continue? I have video called you but what use is that if you are blind and partially deaf. There wasn't even a member of staff to hold the phone by your ear so you could hear me. No one to cut your fingernails or do your hair.

23/10/2020
My Lovely Mum Annie

My Mums routine was interrupted when her day care had to close. There was a dramatic deterioration in her Alzheimers and my mum moved into a care home. My mums condition was worsened because of the restrictions on visiting. Wearing PPE and social distancing only confused her. My Mum had to go to hospital even more confusing as I was unable to visit, unless it was end of life. My Mum died unexpectedly, alone without me. I had always been there for my mum and could not do this for her.

23/10/2020

Keith had been enjoying Day Care three times a week. When lockdown came he would look for the minibus and wonder why they were not coming for him anymore. Things became very difficult for him and me with no help and he was taken into care in May. The home is lovely and staff very caring . I have window visits but he gets upset that I cannot come in and I go home in tears. If I there had been more help during lock down I could have kept him home for longer. When will I be able to hug him again?

23/10/2020
My mum and dad

Both my parents have become very frail since lockdown they have always been active always out and about they live in wales so once again i cant visit and im the only mobile one and usually visit regularly.mum is very depressed and is giving up shes 82 and feels theres no point any more i phone regularly but feel useless as i cant shop for them or visit .they are normally very placid but have become very snappy its very upsetting

23/10/2020
John Shrosbree

My father went into a Dementia Care Home in April 2019, he was forced to move to 3 different Dementia Care Homes within a year as none of them could cope with him. He died in hospital on 4th April 2020 from Covid 19 which he contracted while in hospital with pneumonia. His health deteriorated when the home he was in went into lockdown on 13th March. The neglect, lack of care he received in the care home and the lack of contact with his family were the main causes of his deterioration.

23/10/2020

My mum has Alzheimers and is in a care home. Once again they have shut their doors to visitors.Mum’s dementia has gotten worse and she now struggles to find words.Skype and phone calls do not work. We need a way to continue that all important contact.To add insult to injury the care home have put their fees up twice this year the second time blaming COVID, mum now pays £1050 a week! The situation needs addressing. Please do something!

23/10/2020
Eva

Not been able to see Eva my Mum since March 2020, before this I would visit 3 times a week for 2 or 3 hours. Facilities for visits available after July but outside when not raining!! Eva is on 3rs floor of a dementia care home and does not like going in the lift so cannot get her downstairs & outside. No way could I visit & have to sit 2metres away from her as she would think that I was annoyed with her & would upset her more to visit.

23/10/2020
The Government

My husband and i have been in lock down since March 2020, My husband has got Dementia and he can't understand why we can not visit our family,we are getting really down with it all but, i also understand why you have to do this,if only people would do as the government ask we MAY get through it .

23/10/2020
Rose

My mother lives in a care home on the Wirral. I have not been able to see her since March. I was in hospital. I was told that she had covid-19, then she might die. We struggled for our lives together. She has always supported me with love. I want to support her. She is brave and compassionate. She was a teacher and has always cared about other people. She wants to see her family. She does not deserve this isolation and is perplexed and saddened by it. I fear it harms her.

23/10/2020
My mum Edith

I have only seen my mum for a total of 30 minutes in the last 7 months. Prior to lockdown, I visited her for 2 - 3 hours daily at her care home. I was her "chosen one". The person she knew she could trust. On the 2 short occasions I did visit her, she asked me why she was in prison and that she must have done something very bad to be locked up for so long. Being deprived of seeing loved ones suffering from dementia is nothing short of cruel (for both sides).

23/10/2020

Since March I have seen my mum 3 times all in the garden of her care home.The last time was on the 9th of August her birthday when she was sat on the other side of a wall.Why can't my Dad have visiting rites,like a key worker be tested for covid on a regular basis.Its inhumane to keep people locked away from there loved ones.Protecting the body but destroying the mind even more of a person with dementia.As a family are mental health is suffering.Please let us be reunited before it's to late

23/10/2020

Dear Mike We haven’t hugged each other since March. Because of frequent lockdowns we have seen each other Very rarely, behind a closed widow or a screen. You were once fit and walked miles, now you can barely totter. You are still cheerful, but sometimes while we are Skyping and laughing, tears roll down your face. You don’t focus your attention very well sometimes. I want key worker status so I can be with you now and not just on your deathbed. YourLoving wife Anne

23/10/2020
My dearest Aunt Jilly

Jilly, who has Alzheimer's, nearly died in April of a combination of diabetic crisis and Covid, caused by her care home. I am her only lifeline, but I've only been allowed to see her three times since March, and I now don't know when I'll ever be able to see her again. She has nobody but me to help her keep memories of her rich life alive; and her general cognition is suffering terribly as a result. This is incredibly worrying /heart-breaking for me and nothing short of a living death for her.

23/10/2020
Derek my lovely dad

My dad has Alzheimer's and is in a care home. I have only seen him a few times for 30 mins only. He has gone down hill rapidly because not having any visits from his family and friends. The government think it's more important for people to play sport or get drunk rather than provide testing for relatives of vulnerable people in care homes. They should be ashamed. I miss my dad. I am NOT a visitor I am his family and should be allowed to spend more time with him.

23/10/2020
Nicole

I've been allowed one 30min. visit with my wife since 13th.March. We do have a twice weekly video call but Nicole is in the late stages of dementia and is unable to communicate or move, sleeps most of the time and now has dysphagia. Imagine watching someone struggling to swallow, near to choking, with fear in their eyes and not be able to comfort or reassure them. It's a little like watching someone drown in a horror movie. The feeling of helplessness, sadness and guilt. It's inhumane.

23/10/2020
Vera, my wonderful mother

KEY WORKER STATUS FOR FAMILIES Today is the 23rd of October 2020 and it is the birthday of my Vera, my wonderful mother. I am visiting her today although I don't know for how much longer this will be possible. I won't be able to hug or kiss her. When I was told my mother need 24 hour for her dementia, I found a good home with an excellent manager and kind carers and I visited nearly every day. Life was different for us both but we told each other we loved each other every day, laughed and had

23/10/2020
My Mum Elsie

My 91 year old Mum went into a care home in crisis on 8th April after her dementia escalated due to lockdown. The family have only seen Mum via short video calls; Mum is also profoundly deaf making the whole thing very stressful. She feels abandoned. Mum was rushed to hospital from the care home with a pulmonary embolism, no one could go with her or visit and her dementia has now deteriorated further. It is stressful for both Mum and the family; I keeping wondering if I will ever see her again.

23/10/2020

After hearing news that care home providers are being asked to accept COVID patients from hospital in to COVID pods if they can it’s an outrage after the last episode of the virus Please help stop the government from going ahead with this for all our mental states Thank you for caring

23/10/2020

During lockdown my mum has deteriorated tenfold. The staff at the home have Worked tirelessly to make sure residents are happy now second lockdown and can’t even speak through windows.. the key worker idea sounds marvellous but when will it happen .. I’ve been nowhere to make sure I didn’t get virus so I could do this .... when!! I’m tempted to bring mum home to me but just not that easy ! Boris you promised to sort social care out we depended on you and you have not delivered.

23/10/2020
Steve Baker

Dear Mum We kept you safe & happy in your own home since being diagnosed with vascular dementia last October. We are sorry that you are now deteriorating at a fast pace due to being a prisoner in your own home. Your day centre closed, the carers no longer came, as a family we have done everything possible , but the system has failed you and for that we are truly sorry. You no longer have capacity to look after yourself safely and you no longer recognise us as your children. Sorry mum x

23/10/2020

My Dad entered a care home in February after a broken hip and chronic chest infection, he could sit and chat, laugh and cuddle, 6 months later he is bed bound, asleep all the time, unable to chat or giggle, this is mainly due to lack of contact with his family, we used to see him every day, he survived a major operation and hospital borne chest infection to be locked away , we need rapid testing to enable us to visit, love giggle and cuddle again, for a lot of people it will come to late

23/10/2020
All the elderly imprisoned in care homes

My mother was in a care home. I used to visit her every day. We were not allowed to see her for months. Eventually we were able see her from afar for booked 20 minute slots twice a week. We had to wear masks. My mum couldn't hear very well anyway. She didn't understand why we stopped visiting. She chose to stop eating, talking or walking. When she saw us she would turn away from us as she was so distressed. Then she passed away of loneliness and misery

23/10/2020
My Father

There needs to be some form of rapid testing that allows care home to let relatives in to do the stuff families do, love touch cuddle, without this they die before you

23/10/2020

Hope @more help

23/10/2020
my mum mary

to my local mp in north east derbyshire

23/10/2020

Since your day care and the clubs we attended closed down in February you have drifted further and further away from me. You don’t talk, you hardly smile, there’s no interaction at all, you shuffle about like a little old man. You don’t even react to our grandchildren and they were your buddies.I’d already lost a lot of you to dementia but now I’m losing myself too. Not to dementia but to loneliness and isolation. I still love you but I don’t know how much longer I can carry on. I miss you 💔

23/10/2020
Kenneth Blackburn

My dear husband has been in a Care home since Jan.I have seen a deteriation in his condition as I am no longer allowed to hug or kiss him.He doesn't understand why I am no longer allowed in the home(I used to visit several times a week.We have been married for 52 years and it is very sad that I am not allowed to touch him.Surely there must be another way.

23/10/2020
My mum

My mum has Alzheimer’s. my dad tried to take her out every day. Since lockdown, she couldn’t understand why she couldn’t go out. In June she fell & broke her hip & fractured a bone in her shoulder. She now can’t walk & has carers & has deteriorated. All because you can’t get people to visit to do their job. My dad can’t go out now. People ring or say they will & don’t.

23/10/2020
My mum Pat

The decline in mum’s mental and physical health since lockdown is shocking and started a few weeks after lockdown. She had to be sectioned in May and is now in a secure Dementia home. I’m allowed an outdoor visit once a fortnight. I haven’t been able to hug her for seven months. Why can’t just one family member be COVID tested before every visit. It’s disgraceful how the elderly in homes have been treated by this Government during lockdown. Will I never be allowed to hug my mum again?

23/10/2020

Mum is in care with late stage Alzheimer’s. Since the lockdown our daily visits were stopped and we couldn’t see her for 3 months. We were then able to make sporadic arranged visits in the gardens weather permitting under strict supervision masks etc. Those 3 months without family contact had a devastating effect on mum who withdrew into her already dark and confusing world and she was unable to speak to or acknowledge us.

23/10/2020
Our mother, Joy

We haven’t seen you since March. We have heard your dementia getting worse and your capacity to communicate diminish. We couldn’t be with you on your 96th birthday - and now they’re telling us that our only means of seeing you will be through a Perspex screen while wearing masks. Your deafness will prevent you from hearing us and the masks might mean you won’t even know who we are. Is it worth causing you such potential distress? We don’t know what to do.

23/10/2020
Our closest friends

No day centres open which would give much relief,my friend is ill herself and the day to day struggle is relentless. Certainly COVID has made the situation much worse more quickly.

23/10/2020
My husband, Paul Dintinger.

My husband has been in a care home for two years now. He is in the final stages of Parkinson’s disease with Lewy Body dementia. I moved house last year to be nearer to him. When the virus struck I wasn’t allowed to see him and knew he wouldn’t understand why. It was distressing and also I hadn’t had time to make new friends here. I felt and still do feel isolated, lonely and useless. My companion of 54 years is no longer with me. I can visit once a week now as he is in palliative care.

23/10/2020
Mum

Not being able to see my mum, who is living with Alzheimer's and lives in a Care Home, for weeks and weeks on end, not even being able to use Facetime as she just doesn't understand whats going on, is absolutely heartbreaking. Why can't one family member be tested weekly so that our loved doesn't feel that they have been forgotten and abandoned. The deterioration in my mum has been so dramatic. It is surely in the best interest of residents of Care Homes to have that family, loving contact.

23/10/2020
My Wonderful Mum

Lack of social interaction during Coronavirus times has robbed Mum of her voice, she says very little these days.

23/10/2020
Relatives of those with Alzheimer's

I have a friend in her 80s who has a brother with Alzheimer's. He is in care. I often take her to the care home where she can visit for half an hour in the garden. This week we didn't visit. He was sectioned for violent behaviour. Turned out he had a UDI, liver and kidney infection. That's care in 2020.

23/10/2020
Mary Green

I lost my Mother on May 9th this year, she passed away in a residential home and had vascular dementia. I firmly believe that lockdown and the fact she wasn't able to see me for over 8 weeks contributed to her death. Mum couldn't understand why I was unable to visit and felt abandoned and cut off completely. She stopped eating and became more confused. I rang her every day, but she had lost the ability to talk and would become upset and frustrated. I am now left carrying so much guilt over this.

23/10/2020

My dad’s condition has deteriorated during the lockdown periods. He is able to socialise with other people, attend his classes or enjoy the things he used to. I’ve watched his mental health take a turn because he feels trapped. It’s not his fault - my mum and I share all caring responsibilities, and we work full time. It’s hard for us to entertain him and work at the same time. It’s caused noticeable changes in him

23/10/2020

My Mum has Alzheimer’s and has been in a care home since August 2018 she is 94 and still mobile. She loved to go out a in the community and my family and I would see her regularly. She particularly liked seeing her Grandchildren and the family dogs. She also enjoyed getting her hair done, having a manicure or pedicure. All this has now been denied to her. It breaks our hearts not to be able to hug her and comfort her, to see her so forlorn. I would happily take regular tests to enable visits.

23/10/2020
Tim lundon

My dear husband in care home is crying out for me he needs me to help hem as before he as dementia an cannot understand why I cannot hug hem etc my depression is very bad not because we cannot be together he is my husband this is so wrong

23/10/2020

I live alone with Young Onset Dementia, having no involved family nearby. Prior to lockdown, despite living with acquired disabilities, I lived a busy, active life, running my own Young Onset group, being an advocate and research involvement. Now my only contacts are online and my local Alzheimer's Society office has permanently closed. I continue my work online via Zoom meetings and groups, they cannot replace meeting with others in the same space, exchanging hugs. I am now on antidepressants

23/10/2020
Bertie

I know it is difficult for you not to be able to sit near me, or for me to hug you during garden visits, but I am always thinking of you and I know you will get through lockdown

23/10/2020
John

The conditions for Dementia suffers are degrading -You wouldnt think the NHS was establish for treatment for all at the point of need -nor that people who have worked all their lives,paying taxes should be subjected to means tested assessment for care! Adding insult to injury in the pandemic is isolation and lack of protection. It beggars belief that now one has to give stories of genuine distress to a government more concerned with money than social reponsibility

23/10/2020

Love you so much xxx

23/10/2020

Government rules have locked our loved ones away. The very thing my parents dreaded has come true. No touch or sight of family is slowly killing them. Covid rules have ripped the heart out of the whole family. My mum has dementia and is deaf. How do you think she can manage to converse with someone in a face mask. She is frightened and alone even when among other inmates. I use that word because that is what they have been reduced to. Image being put into prison age 95. It’s beyond cruel.

23/10/2020
All family carers

Message space is limited, what I would like to say doesn't fit. My dad has dementia, lockdown has been hard for him - more anxious and frustrated, more repetitive. Lockdown has also been hard for us as his family, as his carers - seeing the dramatic change in him is hard, but we've also not been able to get the respite we normally would (pre-covid), which makes our ability to remain calm and provide dad with the best care even harder. The government needs to look at help given to family carers.

22/10/2020

Our Dad had to move care homes at 93! Residents were lost to Covid 19 where he was. It required improvement, became inadequate & got closed by the group. After not being able to visit in months we have been unable to be there for Dad to see him into the new home we had to find. Added to the stress, social care failed to find a home without an extra fee. This will be taken from the capital left in Dad's ex council house. Not fair.. A good working man being failed by a Government care system

22/10/2020

To our lovely Dad. We hope can bring your harmonica again soon and hear you play Santa Lucia & the other favourites you recall magically when you pick it up. We hope you sing to the new carers make new friends at the new home you have had to move to. Xxx

22/10/2020
Tony

Never in a million years did I ever think we would end up in this situation, dementia seperated us after all these years, then along came Covid and the Government decided to punish you even more by depriving you of seeing the people that love you most. How dare they do this to us, what right do they have to stop a husband and wife from seeing each other. You should hang your heads in shame, you haven't listened to common sense and allowed loved ones to be given keyworker status.

22/10/2020
Jean

My dear mother passed away in August xx

22/10/2020
My father

My father enjoyed his care home , he took part in daily activities, he made new friends and his general health improved after struggling with care in the community. He had regular bi weekly visits from my sister(40 miles away) and Myself (80 miles away)However C19 took all of that away from him. He died in May -I had not seen him for the entire lockdown. He told me how scared he was if the people in masks, that he didn’t know who they were or what was happening. He died without my touch, alone

22/10/2020
My Dad

My lovely dad passed away in April, without his wife of 30 years, or his loving family around him. Someone had visited him in his care home every day prior to lockdown and although no longer mobile, he had a good appetite and was relatively strong. Five weeks later he passed away. We will never know whether this was COVID as he was not tested. Thankfully, the rules changed the day before he died and we were able to visit to say goodbye. We thank the staff for being with him when we could not be.

22/10/2020
Dad (Brian)

We are fortunate dad still lives in his own home, we do self fund a couple of care visits each day but the remainder of care is mainly provided by Andrew (24 hours per day) with Michael assisting when not working. Of course we want to provide the best of care for our father which he is receiving but its becoming so challenging, difficult, tiring and impacting on our own lives but we will keep going to do the very best for dad.

22/10/2020

A different approach on this, I lost my Dad to Dementia last year before Covid and I would just like to say I wouldn’t have known how to deal with it if he was with us now, he needed to know if we were ok, where we were and rang us asking us to go to see him even though we had just visited him. There are no words to describe how myself & my sister would have coped, it would’ve been heartbreaking for him & us as a family, I’m just glad he didn’t have to go through all of that

22/10/2020

I haven’t been able to see my Dad and hold his hand since 17 March. While I accept the reality of lockdown, I ask what is life for if not seeing the people you love? My poor Dad doesn’t understand what is happening or why I can’t visit. He’s dying a lonely death.... helped only by his carers. My heart breaks for him.

22/10/2020
Ken (My Dad)

Dear Dad, I'm so sorry we haven't been allowed to visit you since early March. We think of you throughout the day and send our love - but that doesn't make up for the in-person support you so desperately need from us. It's a disgrace that the national and local govts have failed to support people in care homes. There are safe arrangements that could be made to allow family members to visit their loved ones without putting anyone at risk - but all we've come across is box-ticking incompetence.

22/10/2020
Alan my husband

My husband has been in care for 8 years. I have seen him every day until lockdown. I can no longer comfort him, hold his hand and tell him I love him. Apart from a few garden visits standing 2 metres away I have not been able to see him In his room.. The carers FaceTime me but he is unable to understand what’s going on-he has no idea that I am his wife and it’s heartbreaking

22/10/2020
My lovely mum Monica

Mum contracted Covid in the residential home. Mum has mixed dementia and the virus had a disastrous effect on her neurologically but the home said it was the dementia, wouldn’t accept that the delerium was due to Covid so they evicted Mum. We were devastated and had to find another home for Mum in the middle of lockdown. Couldn’t view any homes or make an informed decision for Mum. She was thrown out like a piece of rubbish . I need to cuddle and kiss my Mum. That’s all she has left .

22/10/2020
George (paddy)Pittam

After trying my best to care for my husband at home the toll his dementia and disablement had affected me finally arrived last Friday and I had to put him into respite for both our sakes but I was not informed he would be in isolation for two weeks I was devastated to think this might be the last time I would hold my husband of 51 years I came away from there bereft it felt like a bereavement I was mentally in a bad place after caring for him nearly fourteen years was this it please reconsider

22/10/2020
Pam

We largely travel your Dementia road on our own. No carers group, E consultations only when I need help and guidance, mum increasingly in her muddled world and me feeling increasingly alone, anxious about tomorrow, not knowing the questions to ask let alone what would be the possible answers. All alone together.

22/10/2020
Mervyn Howdle

My husband is 81 and has PCA. He needs me to sit with him and hold his hand. I am alone.

22/10/2020
Michael

No visit from a doctor, only a video call. Refused our requests for you to be taken to hospital. We were told that you had a stroke and for six days you suffered. We were refused a post mortem, although a nurse at the home suggested one. You had lived with dementia for 21years but until March we were still going for walks, you had a good quality of life and at 75years old very happy. The final blow, your brain couldn’t be donated for research as planned because the laboratories were closed.

22/10/2020
My Mum

Please let me kiss and hug my 95 year old Mum in advanced stages of dementia who does not understand why her loving daughter does not do what she has always done.We should be Key Workers doing what our parents want us to do .Please remember Christmas is coming..This is cruel to all involved.Please reunite us and give our loved ones the Christmas they deserve.Please let us be tested weekly and go into Care homes. My Mum needs her loving only child to be with her and I need her.

22/10/2020
Eunice Fleming

Eunice lived in her own home, supported by care staff and by me. We all had a good relationship. After several falls Eunice was admitted to a care home just as lockdown began. We were relieved she had 24hr care, but felt terrible that we could not help her transition into a different life. We could see her through a closed window, that was all. At first quite happy, she began to decline rapidly. As lockdown eased she stopped eating and drinking, and passed away - in only a few short months.

22/10/2020
May Haines

My mum very sadly passed away after waiting months to see the family she adored and all she lived for was seeing them every day. Rest in peace mum . We love you xxxx

22/10/2020
Mum

The Government have my full support they have been marvellous in handling COVID. However, assistance must be given to the families of those loved ones with dementia by providing respite. My 92 year old dad is my mums sole carer and he is unwell too, mum is blind and has full dementia and is up 24/7 and needs continuous care. Where is the help ???? No where..... they have both paid taxes all their lives. Please put social care for loved ones with dementia on the top of the Government agenda.

22/10/2020
My mam

Lockdown has been a total nightmare. My mam is in a care home. She’s has Alzheimer’s and is 92 years old. I haven’t seen her properly since mid February. I have had a few 1/2 hour visits but these have stopped now as well. Of course no touching, hugs or hand holding was allowed. I feel totally robbed of the precious time I have left with her. I can’t see an end to this and am very worried that I will never see her properly again.

22/10/2020
Peter

I am so very sorry I have not been allowed to see you since 11 March 2020. When I left you, you could walk, talk and we used to watch the rugby together. You used to play rugby - you don’t remember; but, I do. Now, you don’t walk at all, have to be hoisted in and out of bed, have gone down to just over 10stones. Occasionally you thank the care home staff when they give you a drink. They say they talk about me to you and you smile, how I would love to see that smile myself - no visits have been

22/10/2020
My Mum

My mum will be 93 this weekend. She is blind, increasingly deaf and in the early stages of dementia. She has 5 children, 6 grandchildren and her first great grandchild was born in lockdown. She has not met him yet and under current rules will not be able to until goodness knows when. Will she last that long and will she know the significance of the event? I have not been able to visit her as she lives in Hove and I live in Wales and am not her nominated carer.

22/10/2020
Maria Miller

Please Please Take Notice Of This Dementia Desperate Situation, Far To Many People Losing There Lives, I Myself Have Been Diagnosed With Dementia, Which Has Had A Massive Affect On My Mental Health, Which Has Required Me On Two Occasions To Be An Inpatient For Two Months In Mental Health Hospitals, Action Now Needs To Be Taken.

22/10/2020
My Dad

My Dad was admitted to hospital in April and because of lockdown noone could visit, we couldn't contact the ward and noone thought to contact us until he had been in there for 3 days. Dementia patients don't have mobile phones to call home so something should be put in place so the family get a call each day to inform of their progress. He went in again in August and my Dad liked to sing, when he was crying out in pain the staff thought he was singing?! He passed away in there on 29th September

22/10/2020
My Dad

Dad has late stage Dementia and in February of this year it was decided that he could no longer be cared for at home. Dad has been in care since March. I can count on one hand the number of times I have been allowed to see him. In this time his condition has deteriorated considerably. I feel that Covid has robbed us of the precious time we have left with him. I just want to hold his hand and tell him I love him.

22/10/2020
Margaret (mum)

I'm sorry i haven't been there for you and you can't understand the reasons why

22/10/2020

Not only did you have to fight Alzheimer's, you had to fight covid too, unfortunately you couldn't fight either, and died in a nursing home without us by your side, we love and miss you dad, seems so surreal that I'll never see you again.

22/10/2020

I have been unable to see my mum in her care home except through a crack in the window since February Sh was a happy laughing lady with dementia who loved her visits out singing, getting her hair and nails done, spending time in my house with her family and dogs who she loves, having coffee and cake mornings with me out and visiting friends. Now she’s a shell. She needs her family, she needs me!

22/10/2020
Sheila, a very special Mum, Grandmother, Great Grandmother and Aunt

Our amazing Mum, Sheila is in a care home. We greatly appreciate everything that the staff do for her & the affection and care that they give her. However it cannot replace the love and support of her family. We miss her greatly.Her first Great Granddaughter was born in March and she had has not been able to meet her and she has not been able to see her Great Grandson's who always bring a smile to her face. It is heartbreaking when she asks when she will be able to see them, what do we say?!

22/10/2020
Betty

My mum is in a care home with dementia. I hadn’t seen my mum since March due to lockdown. Then in June mum had a fall and badly broke her hip. She was in hospital for nearly a week and then returned back to the home. After being home for about a week they phoned to say mum had become unresponsive and they had put her on the Pathway. We were allowed to go and see her. When mum saw us she became responsive again and so I was asked to leave again.

22/10/2020
Keith Payne

Once again today I face timed you and saw the sadness in your face as you don’t understand why I can’t visit you. I worry as the weeks go by so do the times that we could share and your dementia is so much worse than seven months ago.You told the other day life isn’t worth living and to be honest that’s how I feel at times All I want is to sit by you and hold your hand I love you and I miss you I do hope it won’t be long until I can see you again love you always Jane xxx

22/10/2020
Government

Not allowing contact with relatives and going out from home's is increasing her suffering greatly.

22/10/2020
My mum Carole

My mum was admitted to hospital at Christmas she became be bound and released into a care home in January . Both myself and dad visited her every day until lockdown in March. I haven't seen her since then. Dad managed three 15 minute outside visits before they were stopped. We ring her everyday and can tell she is getting more and more depressed. She has Parkinson's and vascular dementia. She is not allowed physiotherapy. We can't even window visit as she isn't on ground floor. It's mental totur

22/10/2020