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
It has been a tough year, but we are finding new & creative ways to support each other. The future is bright and we will get through this if we continue to support each other
Mum was diagnosed with both vascular dementia and Alzheimers just before lockdown #1. As my (not so useful) Sister moved in Mum can remain in her bungalow HOWEVER Mum isn’t encouraged to keep an active mind, nor to appropriately observe day/night as they don’t dress and get up so late that meal times are all over the place. Luckily I’m the financial POA as I alone can safeguard it!!! Now with lockdown 3 I can’t go round. Nothing I say makes any difference so Mum’s going downhill.
Mum was diagnosed with Vascular Dementia a few years ago, we plodded on and both of us developing coping strategies. Early in 2020 it became apparent that more support was needed and I approached our local Social Services. Lockdown halted all requests an no support. I tried to arrange extra care myself but there was no capacity. Eventually I was forced to look for a care home. With more support Mum might have stayed in her own home
I have given up my job to look after Mum as we couldn’t put her into a care home that we couldn’t visit
I have given up my Job as we were not able to look around care homes and visiting was so limited.
My dad went into a care home in May 2020. Video calls have been possible, but he doesn’t recognise us. Yesterday, his carer put him on the phone. To my amazement, he responded with five words - “Hiya Julie... Brilliant… Love you”. I felt both elated and broken-hearted. Who knows how much he could have retained had we been with him in recent months; to hold his hand, hug, encourage and reassure him directly. Please, let’s not waste any more time.
I have tried so hard to get to see my husband and be able to touch and hold him. He has dementia and Parkinson's cannot talk, walk hear very well and is now on liquid foods. I have been on BBC Look East so many times asking the government to let me in so that I can touch my husband. Have written and emailed my MP and Suffolk Health minister. Feel I cannot do much more. Would love to be on this new pilot scheme so I could at last hold my husband 50 years before it is too lateTorture of the heart
Dad went into the home at the very end of January after suffering a stroke, we had just got him settled in with a visit from someone nearly everyday. Then lock down, dad became ill, lost weight, behaviour changes but worse of all we lost that very close connection we had. On the rare occasions we have seen him, he responds to his carers more than he does to mother and myself. In my heart I know this would happen eventually but the lock down has just sped this up and I fear we we have lost dad .
The start of my poem from July 2020. Mums deteriorated even more:
I’m losing my mum to Covid
But not as you might think
It’s been 4 long months now
But not as you might think
Mum has vascular dementia
I’d visit her every day
But now because of Covid
They are keeping me away
My mother was diagnosed with Alzheimer's in 2017 and went into hospital for 3 months due to her Diabetes in Feb 2020. She was discharged into a nursing home because of the decline in her mental state where visits were possible in the garden up until October. Now only window visits are possible where my mother becomes so distressed and agitated because she can't understand why she can't hold my hand or have a cuddle or even hear me through the window. I'm heart broken and so is she.
My husband was fine in February 2020 he was fighting Alziemers disease but was pretty fit then Covid hit in March my husband went downhill rapidly, by July he could do nothing for himself we had to feed him toilet him his mobility just went we had to have nurses in to help care for him by September he was admitted. Into a nursing home sadly due to no visiting rights Adrian passed away on the 30th of October at least with his family round him .
I am in a permanent state of anxiety wondering if or when I will be able to see and hug my husband who until he had a stroke 18months ago was my carer as I am wheelchair bound with MS.Why don’t people realise how vital it is for both of us to have regular contact.To deny this is no less than cruelty.This sort of life is a living death.I am desperate to bring my husband home.At least I will see him even if it will not be easy with his confusion.He feels I have abandoned him in his tie of need.
Diagnosed with vascular dementia in 2018, my mother Jessie had to deal with the effects of her illness and then, aged 99, with her diagnosis of Covid in hospital, isolated from her family. The one thing that matters to Jessie now is contact with her loved ones, including her first great grand daughter Ivy, who she has never yet been permitted to hold. Now that Jessie is facing palliative care, she is finally allowed face to face visits, though sadly this seems like too little too late.
Dear Mam, you have not been forgotten or abandoned. I think of you everyday and look forward to being able to hold your hand again and to listen to music together.
I have only been able to see my lovely Mum in her care home twice since March and then only through a window slightly ajar. We are missing precious time together as each day I am losing a little bit more of her. Dementia is cruel but it’s even worse when I’m not ‘allowed’ to see my own mother.
Love you lots Mam xxx
Unless you have been through this battle with someone with dementia you will never understand how difficult it is. My husband does his best to look after me, but struggles at times.
My sister was diagnosed with dementia in 2012 , this simply broke my heart , so hard for me because I live in Scotland , and she lives down south , I used to go down and see her as often as I could , but since the virus , this has been impossible, I get to speak to her via FaceTime , but I find this upsetting , because all she says to me is will I see you soon, I lost my other sister in April this year to cancer , and COVID prevented me from going to her funeral
I also lost my husband in 2018
I live with my 96 yr old mum. She has vascular dementia and i am her sole carer. We saw nobody during lockdown but starting from the end of July a private carer who used to come on Saturdays to give me a break started visiting again using appropriate PPE and safeguards. I don't know if I could have managed without this weekly break restarting. I am so grateful for her kindness, professional skills and willingness to continue caring in this way. I would like all carers to be paid a decent wage.
I miss you so much Tony, and now the government has decided that window visits are a good idea for people who are suffering with dementia, which shows how little they know about this cruel illness. I was beginning to see a little light at the end of the tunnel but was devastated by the news yesterday. The answer is so simple to stop all this suffering, give us keyworker status. This cannot be allowed to go on much longer, we all have human rights, and they are being violated by this government
My mum has been in hospital since 14th August
Her dementia has spiralled downhill and she is to be discharged into a care home she is very frail and I and my family need to be able to see her before we lose her
We don't want her to die thinking none of us care
I believe her dementia has got worse through lack of family visits
It's cruel and inhumane to keep family away from poorly loved ones
My mum has Alzheimers, but because she still functions well day to day, she doesn´t need any external care. Instead my dad cares for her. They manage quite well together, but lockdowns are taking their toll, particularly on my dad´s mental health as he tries to care for my mum without the additional support that I would be able to provide by visiting.
More consideration needs to be given to enabling support bubbles to be formed with vulnerable households with more than one adult.
My mum 93 has Alzeimers her 24hr carer who has been with her since lockdown ,is fantastic but she’s not had 1days respite for fear they will catch Covid . I’ve managed five visits but have been isolating myself ,so each visit seemed like a risk for us all , but one I needed to take all our mental health . My mum is slowly deteriorating is confused sad lonely and the money won’t last much longer Will she have to go into a home and be more isolated ,this is heartbreaking .
My husband was diagnosed with Alzheimer's at the age of 61. We live away from family so lockdown means it is just me and him. There has been little support since his diagnosis and Alzheimer's society has been the only life line. Just realised I am limited by how many words I can use - it is tough, not just on the individual but does anyone think of the carers?
After locking down in March, I was only able to visit my Mum in 5 occasions through August, 4 of which were garden visits. On each visit my Mum cried as she couldn't understand why I'd not been visiting nor why I wasn't able to hug and kiss her. In September the home closed again and I've not been able to visit since, each time I whatsapp she's more and more distant with me, and I can only look on as she deteriorates further. It's inhumane and barbaric treatment for the dementia sufferer and fam
My husband was diagnosed with dementia last October.We had people coming then everything stopped because of the lockdown.No one phoned from the Dementia Clinic at the hospital and my husband has tonic clinic seizures due to epilepsy.He has many more ailments and basically no one gives a damn.So now I don't ask anything anymore but I will continue caring for him until the breath in my body has gone.We have been so let down and it's not only his mental health suffering but mine as well.
Two members of our family have been allowed for garden visits with Grandma every 2 weeks. This is so much better than most care homes, but its so sad that today, on her 99th birthday, we couldn't be there in person. Happy Birthday Grandma.
I have seen my nan once in 8 months. She has aged considerably and looks even more lost than she did before this pandemic. My nan had Alzheimer's and probably feels like we have abandoned her. The long goodbye of this horrible disease has been worsened by your protocol in care homes. it is ok for carers to come back and forth between their work, shopping, family life and be within 1 foot of my nan...but we cant. Why are we being robbed of the last months or days with our loved ones...shocking ?
My husband has been shielding at home since March, in order to keep him safe.
I have been caring for him for thirty years, through Aplastic Anaemia, a brain haemorrhage, epilepsy, Multiple Sclerosis, a mini-stroke and MS Dementia for at least eight years. He has bladder, bowel, mobility and sight problems and memory issues.
I have Osteoarthritis, Carpal Tunnel Syndrome and Cervical Spondylosis in my neck and spine, not helped by 24/7 caring and putting him first always.
Mom had lived in assisted living just about a year when COVID 19 came in America. By the time we were able to have an outside visit with her, it was obvious the quarantine had been taking a huge toll on her dementia! We moved her out at the first chance we could get or it undoubtedly would have taken her life for sure! My sisters and I had moved her into my home. It was good at first but ended up being more than we could handle. We found a wonderful new assisted living home and she's loving it.
Jim has Lewy Body dementia .When he was last taken into hospital in September I was able to visit an hour a day . In 7 days he was well enough to move to a care home for respite. After that he came home and was well for some weeks. Now he is in hospital again but not in a dementia ward. The staff do not seem to understand dementia needs. It has taken a week for me to be able to speak to him by phone (visits not permitted). He was in tears as he has hallucinations I had died, plain cruelty.
I am glad my love is not here now.But the guilt of him dying in a home won’t go away.I begged social services to allow him to come home.They declined and said I was not capable,it had to be in his best interest.(12 weeks in a home) my promise to bring him home was meant to be when he was alive. Can’t forgive social services who only arrived on the scene approx 15 weeks before I lost him. Lonely lost and still angry.
Freda was diagnosed dementia 2 years ago and was coping quite well, but after lockdown and not being able to socialise at the gym, club or with family her memory has deteriorated, now cannot remember family members, even did not recognize her son recently, can no longer remember friends, I have created a photo album with family names with each photo. Freda cannot cope well with cooking or recipes, even has trouble using the microwave, I have made a step by step chart of what buttons to press
Being together is still the most important medicine for Joyce.
Due to Lockdown and the closure of Day centre. Dot’s family cannot visit her. She has not been to the centre since March 2020. Dot is an active 92 year old who enjoys interacting with peers and staff at the centre. This is not good for her emotionally, physically and psychologically. We love you Dot!
My thoughts and prayers are for you and with you and all who suffer from the cruel disease of dementia
This is my Mum at the start of the year, fun and happy despite her dementia. Lockdown has had a devastating effect on her, she is the shadow of her former self. We miss her dearly and she needs us more than ever.
My husband, aged 74 years, was diagnosed with vascular dementia in 2014. Until Lockdown in March 2020 he was doing so well. He enjoyed walking, singing, socialising and a reasonably stable mental health. We were able to enjoy life to the full as advised by his Consultant. After lockdown all of this, except limited walking, was taken from him. After six months he is a shadow of his former self, constantly in need of reassurance, guidance and care in all aspects of everyday life.
Mum raised me & my sisters alone for 15 years. We have always been the closest family. At 58 she was diagnosed with Alzheimer’s. It has been devastating watching her slip away from us, but we have been there with her through it all. We’ve cared for her at home & were there when she had to go into a care home. We visited her, we hugged her, we listened to music with her, we laughed with her. Covid has now taken that away. She is near the end now & we can’t see her, we are broken and it hurts.
We haven't seen our dad since 28th July. Initially due to a hospital admission where there was no visiting, and now as he's in a care home. We've gone from speaking and facetiming every day (during lockdown) and now struggling to contact the home where he is as the staff are understandably busy. He quite often tells us he thinks he's 'done for as he doesn't understand why he's there without us and why we're not seeing him. His mood is so low that the staff have to prompt him to shower and eat.
Please let this virus go away so we can get back to seeing our lovely mam and dad who are 94 and 91
I cared for my mum who had dementia. She died just before the covid outbreak. I often think of how I would have coped in terms of "shielding" her. Also how I would have coped with my own well being which, at the time of her death, was at breaking point. Covid will pass, but the repercussions of mental health as a result of lockdowns, etc will be an issue for years to come and, it seems, of no concern to our politicians.
I am 35 years old and not one day went by when I never seen my grandad, he developed mixed dementia and went into a care home nearly 2 years ago where I continued to visit as much as I could .Before lock down his dementia had progressed a lot since diagnosis some days he didn't recognise who we were. It’s now 8months since we were able to visit him the only contact is by sending cards and photos the care home post . Everyday I wonder will i see him again and if so will he recognise us.
In March I was told that I couldn't see you..
You didn't understand.
Kept in a home with maybe a phone call..
You didn't understand..
Thinking you had been dumped, the dementia got worst..
You didn't understand.
You caught the virus and was kept in a room..
You didn't understand.
Fight or flight, you chose to fight, so they sectioned you...
We didn't understand.
Your now sectioned 3, asking everyone to help you..
They don't understand.
I'm trying to get you out mum.
I do understand.
I have only seen them through the window 🥺
They have been married over 50 years and are both in seperate care homes due to different illnesses and needs.
My grandad has alzheimers and my gran parkinsons disease.
Before coronavirus i would take my grandad to my grans care home to see her but now im unable to and they both miss each other loads.
I miss them both too. I miss taking my grandad on our walks. Hopefully we can all meet again someday 😪
Something needs to be done ASAP for all of us who have loved ones ( especially with dementia) so we can see them , hug them , they need this as much as we do. I’ve seen my dad once for 3 minutes in 7 months window visit he looked liked he aged 10 years it broke my heart We are loosing more and more precious time as this virus goes on. I appreciate all the hard work care homes are doing keeping them safe and I’m truly grateful but I need to hug my dad. Please
Mum I am still here waiting to hold your hand one day soon. I have kept dropping off goodie bags at the home and video calls but I know this is not something you understand any more. Human contact is all that makes sense to you now.. Know that we are fighting to get back to you.. We love you xx
Mum. I see you weekly on Skype and I saw you 3 times in the garden. We are cuddly and you were confused as we were so far apart. I feel I have lost 6 months of your life but hang in there and we will cuddle at some point. I miss you so much and love you more than ever. Thank goodness for the fabulous carers.
I haven't seen you other than in a photo since March. You do not understand or respond to technology as you are in late stage dementia. You do not understand why I have not been to see you, and you may not know me when I'm with you, but I miss you, love you and want to tell you so in person whilst giving you a hug and being there to hold your hand and resaaure you. Close family need to see their loved ones in care homes.
Lockdown will leave me with a lifetime of trauma over my parents being locked in a care home away from their family. They went into care 1 week before lockdown if they have any feelings left they must feel abandoned and lost, wondering where all their family has gone. It is heartbreaking beyond belief as they are at the end of their journey and this time can never be reclaimed. We need to be able to hug them now before it’s too late.
Sheila is in a care home and is missing her family very much and they are missing her greatly too. They want to be there for her - to kiss her cheek, hold her hand, give her a hug. Sometimes she forgets why they cannot visit her which is heart-breaking. This is precious time which, once lost, can never be regained. The family and loved ones of care home residents are not visitors - they are a vital part of their care and well being. Safety is key but there must be a compassionate balance.
Dad passed away 20.06.20 after being isolated having a cough, no tests available l believe loneliness had some part in his death. Having been deaf and non verbal since childhood.
Mum passed away 12.10.20 deaf from childhood so sad my mum missed my dad. Always asking when l was going into see her. She said she was depressed and in prison. Cried, asked me is it right your dad died. 💔
Both went into care home together and both have died in this horrible lonely time.Dementia & loneliness.
Throughout lockdown myself and my Brothers were unable to visit our Mum in her Care Home, she was in the final stages of Dementia. When visiting was allowed in the garden, it was limited to half an hour,keeping 2 metres away, and only one nominated Family member. Yesterday my Mum deteriorated, I was unable to visit until this morning, when I was five minutes too late, and she passed away, my Brothers were not allowed in the home, I sat with Mum and held her hand for the first time since March.
Im Highlighting this Issue To help get a Cure for Dementia. which needs to be Addressed.
Were all thinking about you and wishing we could be with you.
I have seen my mother only 3 times since lock down. The first two times we were shivering in the cold very far from each other and the final time indoors where she was sitting in reception and I was sitting even further away near the exit. I really don't understand why we can't be near each other with proper PPE or at least a screen. Even in prison they are allowed visitors. She has little control over her life at it is, the very least she should be allowed to make a choice .
I have been a volunteer with Alzheimers Society for many years. Latterly I visited and regularly took out Maureen for an outing until such time as she had to go full time into a care home. Now not only can I not visit her but her wonderful husband, Bob who used to visit hr 3 times each day now cannot go in to see her at all. She is way beyond listening to a phone call or seeing him through a window but her condition has rapidly gone down hill She is bereft of her loving and caring family
My siblings and I have been caring for our mum for 11 years, through her dementia. She has been in care for over 5 years but, after a Court case, mum is allowed to stay with me for long weekends. We have been with her almost every day for 11 years and now, due to these restrictions, we cannot even see her from the garden of the home. You must allow visiting to these vulnerable people. They need and deserve their loves, they need to know their families still care and are with them.
I have seen my Mum a handful of times since March, while i'm thankful for these few visits they have been outside and we have been behind perspex. making it virtually impossible for her to hear or see me properly . She was used to me visiting nearly every other day before lockdown , the months apart have left her lonely and confused and the decline is dramatic. She spent her life looking after her family and all i want to do is give her a big hug and look after her when she needs me the most.
This was the last time I saw my mum smile. I’d cared for her for 20 years. She’d only been in the care home for 4 months when Covid came. I could no longer see her and she didn’t understand why. She gave up on life, stopped eating and drinking and died 3 weeks after this photo was taken. She must have felt so lonely and abandoned. To not be with her during her last weeks was heartbreaking and I will forever feel the guilt of not being with her. It’s a sadness that will last forever.
This isnt the answer, these residents need to see there families and they should be treated as key workers.
My mum used to be out with someone from the family everyday, receiving love, affection, getting physical exercise and mental stimulation. All that has gone since March and she’s only seen her husband (of 57 years) once face to face...her physical and mental condition is deteriorating quickly without the family support. This support is life saving and needs to be reinstated, please help us save a life!
We need to be in contact with mum her dementia and her mental health has got much worse, she needs physical contact with her family.
June has been in a care home in Cheshire for 8 years and celebrated her 90th birthday during lockdown. She is blind and has had dementia for over 15 years. I used to visit her several times a week to help with her meals. She has had an interesting and exciting life. We were allowed to visit her in the garden of the care home and once inside but because we are now in T2, all visits have been stopped. We all miss her greatly and can't wait for visits to be reinstated.
The reality of lockdown and the Covid restrictions have changed my fit, active 51 year old Son into a hospitalised, unhappy Man. He has early onset Dementia and taken a massive dip due to all his activities being cancelled and Carers unable to come. I am unable to give details of our names etc.as he has teenage children who are totally against any publicity. My Son has lost two and a half stone in weight and is now looking at a very unsure future. I can visit for one hour on two days.
My lovely Mum was forced to moved from a care home where she had been for 2years, to a new nursing home where she knows no one. She was all alone in the journey and doesn’t understand why I cannot see her for more than ½ hour every 10 days. I visit outside come rain come shine. She sits inside begging me to come in. A carer monitors our visit. We cannot have a private conversation. When am I going to get carer status and be able to look after her before she dies of a broken heart.
My Mum is in a care home with Alzheimer’s disease. Her mental health has deteriated since not being able to visit her properly. She becomes very tearful on a night time and does not understand why she has to stay in doors with no visitors. This is very hard for us as a family hear. FaceTiming is not good as she doesn’t have the mental capacity to understand it. Being able to hold her hand and see her face to face is the only way to communicate with someone who has this illness.
My mum was in a beautiful care home for nearly 3 years but sadly she passed away on 19th October. Unfortunately lockdown had a detrimental affect on my mum from April she sadly deteriorated and lost a lot of weight. Garden visits were then confined to her room with only myself being able to visit wearing PPE. The only time other family members could see mum was at the end of her life. Shall miss my mum so much.
Keep them safe from covid u say at what cost decline in physical and mental health. The elderly thinking they are in prison !! Lonely feeling abandoned leads to giving up as they feel a burden and unwanted. Please allow safe visits with ppe and testing organised by the goverment
My Mam Shiela has been in a care home for 6 years. Thank God, that she is totally unaware of what is going on now. My sadness is for my Dad he is 90 years old still at home. He is a wonderful man, a joy to his family and stoic in every way. However he has not been seen his wife, my Mam in the flesh since March 17th, 7 long long months. Until then, he visited her every single day to settle her into bed at night. It breaks our hearts, to see what a brave face he puts on for us. The is cruel!
My dad was sectioned in February 2020. Very poor care and lockdown mean he contracted Covid and his physical and mental state plummeted as well as his confusion and distress. By the time we were asked to find a nursing home several months later he could no longer walk, toilet himself or eat or drink himself. This disease is all about decline but it could have been slower, he could still be with us. We only got to hold his hand when he was slipping away this month. He’s gone now.
We have seen you once since March, we can't hold you or kiss you or let you know how much you are loved when we look in your eyes. We facetime but you are confused and sometimes are having a bad day. You don't know dad has passed and without being with you it feels like we have lost you both. We need to be with you mum, to hold your hand and to tell you how much you mean to us.
Is Mervyn the same person who worked for Brownhills Council in the 1960's
I've seen you once since March. You missed my birthday, your birthday, the anniversary of Dad passing and you don't know your sister-in-law has died yet. It feels like I'm grieving for you already. You won't understand why I'm not there. Sorry Mum x
Dad went into a care home during lockdown. There are times where he doesn't understand why I can't see him and he gets very distressed. This maybe an unpopular opinion but, my Father's care home don't value visits enough for the residents wellbeing. As long as we are careful, why can't we visit more regularly or more skype/video calls. More personalised, holistic care is needed for those in care homes.
Mervyn has very bad, frightening nights, which is a strain on the care staff. The Home try very hard to help, sometimes allowing me two half hour visits a week. If I could sit with Mervyn for at least an hour on a daily basis, I could calm him. He has admitted that he is lonely and misses me
I’ve gone from seeing mum daily to a brief visit weekly if I can get a slot. Mum doesn’t cope well with the glass panel between us as a big part of our interaction needs to involve touch, helping her eat and doing activities together as she can’t hold any kind of conversation especially through a microphone. We have always been close and never apart for very long. It’s heartbreaking to know that she is only down the road and I can’t see her more often.
Prior to lockdown, my 97 year old mother who has advanced dementia, recognised me. She called me darling and told staff i was her daughter. My role was to check that she was being treated well and was provided with the few remaining things that made her life bearable, such as familiar classical music. I was her voice. Now she doesn’t have a clue who I am. I have seen her just 3 times since lockdown. She has no one to sit and hold her hand. This once highly intelligent, loving woman has no one.
I miss you.
I can't treat you to a strawberry cornetto whilst you have your hair done.
I can't sneak you another chocolate when Mum isn't looking.
I can't watch you pull a toy out of your handbag and set it off across the table.
I can't read our favourite book The little Red Hen to you (so her did).
I can't give you a hug when you are sad.
I can't hold your hand and sit next to you watching the world go by.
I can't blow kisses to you.
I miss you.
In March we made the dreadful decision to put mum into a specialist demential home. Little did we know that a week after she would go into the home, lockdown would be enforced. After my Dad died last year who was Mums carer, I moved in to look after her. I went from seeing her 24/7 to not seeing her at all for 18wks. The day I did see her through glass I couldn't believe the difference in her. She could'nt speak and had absolutely no idea who I was.
Lockdown again and once again I cant visit
I need proper contact with my mum, I was her carer until she had to go into a care home, we needed her to be safe at night and it was great before lock down because I still took her out everyday and her life was still the same expect she felt more secure. Then lock down happened and she hasn't been out with me from March, she is still well cared for but she dosnt understand why her children cannot get in to see her, she thinks she's abandoned, she has lost four stone in weight
Contact for both is so important I looked after my dad for over 5 years the last year he lived with my family did everything for him he was still inside at times when he smiled and said he loved me and call my name I knew my dad was still there at times I never of Cope not being a part of his life I am sure he of given up to he went in hospital for last few weeks of his life where he given up i went up twice a day spending time with him everyone needs that contact
Missing you mum hope can see you soon love
Lockdown hasbeen hard on my dad. The reality is our loved ones have deteriorated through lonliness
Our mum is in a nursing home & has been since March following surgery which resulted in her having a below knee amputation. We have not seen her except through a window. She has dementia aswell & doesn’t understand why we can’t visit her properly or take her out for lunch or a drive like we always used to. She is going downhill & psychologically we can see her decline. The staff are wonderful but she needs her family. We would happily wear PPE & take a test to ensure her safety. This is cruel.
The digital divide has never been more obvious. The pandemic has highlighted the problems with care homes that lack funding, staff or the actions to help connect family members with residents in their care homes during one of the most unprecedented times of peoples life time. We are grateful that our dear Nana is safe but we have no way of seeing her as the care home will not purchase tablets or the time to make be use of digital options to connect loved ones. Consistency is key.
Since March, I've had a dad shaped hole in my life. He is 58, suffering with Early on-set Alzheimer's and has missed out on more than half of my daughters life through lockdown. Loosing the dad I know, so slowly to Alzheimer's has been utterly heartbreaking but lockdown has added another level of pain. I want to be there for him, make him feel reassured, loved and to know that we are there. They are in a prison & I believe one family member should have key worker status as a matter of urgency.
Missing Our walks
June is my mother and in 67 years we have never been apart for Xmas, birthdays, Easter, holidays but 2020 and Coronavirus has undoubtedly changed all this. Mum has always been my best friend until dementia took her away from me and she had to go into a care home for her own protection. She slowly lost us all but I visited every day at least to keep her memories alive and everyone loved her and commented on how she was able to share a joke and keep others smiling. Since lockdown I have hardly see
Please let us see our mom. Three distant visits since March 16th. Now locked down again Heartbreaking. We need care homes open if only one person visiting per week. Surely could arrange one room for visits.
Carers go home every day to their families plus mix with others. This can't go on we need to see our loved ones.
My brave husband has gone from walking and climbing stairs in March, and going out from his carehome and enjoying so much of life still, to having to be hoisted from his bed to a chair and just sit as now unable to walk. We've gone from daily contact and outings to barely seeing each other since lockdown in March. Through this awful time I've had to transfer him to a different home as his care needs have increased during lockdown. He's only 69, its so tragic words can't describe the pain.
Missing you, but ... I’m glad you’re not here to experience lockdown in a care home. You died three years ago and if I think about you now I imagine how it would have been for you. Pain, heartache, tears that never stopped because I could never explain why I could no longer hold your hand and hug you close. It would have broken your heart.
As a keyworker trained in use of PPE and having regular tests (all negative) I am not allowed to visit my Mum who has Dementia in her care home room. Dementia has led to the sale of the house my Dad worked two jobs for, it has decimated my savings and given endless stress. Now, the care home tell me my Mum is in her final days and I can't sit and hold her hand as she dies. Too late for us but I wouldn't wish this heartache and guilt on my worst enemy.
We're so sorry Mum that we haven't been able to visit you for so long. We really have tried!
Unfortunately when we were allowed to visit you in your care-home room it was too late for you to know.
As you're bedbound and have cataracts and impaired hearing, garden visits i-pads and phones were out of the question and window visits terrified you.
We're not allowed to hold your hand and comfort you in your final hours. Please forgive us..
Our darling Mum has Parkinson's dementia. She has been in a nursing home for six years. She has deteriorated significantly both physically and mentally since March. Our best form of communication with her is being with her and touch. We have seen her become increasingly distressed due to this lack of connection. I don't know how long we have left together. Our hearts are breaking. The government must look at the care home situation as a matter of urgency during this pandemic.
The families of care home residents have done everything asked of us and now we NEED something in return. We need KEY WORKER STATUS, we need to be able to visit on a regular basis, fully trained in PPE requirements, we need to have access to regular Covid-19 testing with a fast turnaround so we can support our families. Our families don't have time to wait and we are no longer willing to wait. This would be the greatest Christmas gift of all. Help those who cannot help themselves. Thank you.
I have not been able to visit my mother since before lock down, not been able to hug her, kiss her, have time with her. As this horrible disease progresses I don't know how much time there is left not only for her to remember who I am but how much time she has left to live.
Video calling can only replace a physical meeting partiality. How much longer do I have to wait before I can visit her?
Seeing her family keeps her in touch with the here and now and keeps her mind active. Stop this agony.
Mum lives with me and my wonderful husband Barry in Weston super Mare. Her Alzheimer's diagnosis was in 2013 and after an early seizure was taken off medication and 'signed off' by the mental health team. In the last 7 years no medical / social care practitioner has called to monitor changes or to ask if / how the family is coping. No attention has been paid to the brain disease which robs her of the life she once had. She is now 95 and lockdown has curtailed whatever activities we did.
Jenny is my wife, and has been for 60 years, but now has advanced mixed dementia and is a resident in a care home. She no longer talks and is bedridden. I am unable to visit her due to current regulations, please find a way to enable us to meet again before it is too late!
Dear Dad, I wish that we could have been with you in your last days as you struggled with Covid. You were exposed because the government encouraged hospitals to discharge Covid positive patients into care homes. We all miss you so much, especially mam who visited you everyday before the mandate went out that care homes should be closed to visitors. Even though you no longer knew who we were, we still knew you and loved you no less.
We couldn't even all attend your funeral
When I spoke to my mum on the phone yesterday the only coherent sentence was, ‘Will you come and see me?’ I can’t. How do you think that makes me feel? The effect of the pandemic on elderly people in care homes and their families is acknowledged but not understood. My mum and countless others don’t have time for ‘normality’ to return or for pilot schemes. We need family members as key workers now. We need to be with each other at this sad but precious time.
My darling husband has had Alzheimer’s for five years and, until the Covid crisis, we were able to get out to visit family and friends. Unfortunately Ian was diagnosed with prostate cancer in December last year and we have been coping with hospital visits and home care (from me!) since then. The last time we saw most of the family was at New Year. Our dear daughter does her best to visit, but just sitting outside, when she can but she and her family are now under lockdown as well.
Although there are two of us in the house because David has Dementia therefore we have no interaction ie conversation, activities and more important laughter, I feel I am living on my own. As a single person I would be able to spend time with my family and equally they would be able to visit me. In no way do I blame David or feel sorry for myself but it is a lonely life and I can see nothing but a long black tunnel with no light at the end in the near future. I miss my husband David.