Real stories

A dementia poem about my mum and care home restrictions

I feel your pain. I lost my mum in April, locked away with Alzheimer’s in a care home with no understanding , it’s truly heartbreaking, I’m trying to cope with grief and extreme guilt I couldn’t be with my mum. I lost my dad in January too.

This sounds so familiar, we are lucky enough to have 30 minutes each week but dad no longer has any idea who I am, COVID has done that to him, who are you he asks. He survived and recovered from this dreaded illness but is so frail and confused, what quality of life does he have left. Is this all our time left with him will be! It a relief COVID didn’t take him but what has it left in its wake!

My heart goes out to all on here, a truly awful time. I resonate absolutely with Jane and wonder where our strength comes from to absorb and deal with this serving of life. My parents will celebrate 60 years of marriage next month, Mum in a care home with a weekly 30 min visit and my Dad, still alert but ageing, living alone and left wondering! Strong as we try to be for our families sometimes it just doesn’t seem fair.

What an amazing collection of personal experiences and the adverse effect of lockdown and loved ones in Care Homes. There is something which resonates With each of the children moments in terms of with my personal experience with my mother who is 95 years old, has dementia and has been in Lockdown in a Care Home since March. My summary of the past few months is:
- it’s going to be very difficult to forgive the government and their medical advisors, particularly psychologists, for underestimating the trauma those elderly care home residents Have been through.
They have survived the actual Covid -19 Viral pandemic but have been Deprived of personal contact with their loved ones for months and as a result deteriorated both mentally and physically during that period
- they are a generation of trauma survivors and should have received additional rehabilitation support to help their recovery.. instead they have been deprived of exercise and mental stimulation for 6 months and abandoned to the
Daily care of staff, not trained to provide this Specialist support and forgotten by the government and CQC. They have been denied access to their loved ones who could make a huge contribution to their rehabilitation process.
- I agree with those who highlight the fact that the carers come and go with no restrictions on their use of public transport going home to small flats providing shared accommodation. It is not rocket science. With adequate focused planning the government and medical advisors should have capitalised on this vital support Available from family and friends Ensuring that they are subject to the same guidelines as the carers and administrative staff and allowed in on a regular basis
- I also agree with the contributor who suggested that perhaps the reason there has been such a delay is that some Care Homes are even more understaffed than pre the Covid virus. This certainly true in my mother’s care home which is run by Care UK. This is shameful, there could never be a time when elderly care home survivors need more care from well trained staff rather than less.
- what kind of civilised society establishes a regulating and monitoring body which is actually funded by the Care Providers? Is it any wonder that the CQC is a toothless regulating body in the U.K.?
- government and medical advisors need to wake up PDQ to the fact the majorly of families with loved ones in Care Homes have NOT Chosen to abnegate responsibility but for months have been denied to do so. In the unprecedented situation we are currently in, the standard of care is falling. As relatives we are sounding the alarm and calling the government and advisors to account to address this problem as a matter of urgency. We need to do this collectively.

It's been a dreadful number of years. My loving funny always busy lovely husband had all this taken away from him by early onset dementia and depression. In March i agreed with the professionals that my lovely husband needed more help and support than i was able to give him. This was the hardest decision i have ever made. On 20th April i took my lovely man to our chosen residential nursing care home. He died with the virus me by his side on 24th of June. So many questions how did he come into contact with the virus, why did I send him to potentially his death and how will I live with this.He may still be here if he stayed at home with me

Oh my heart is breaking as the words of the poem is describing exactly what is happening with my mum in a care home I didn't see her for four months because of covid 19 then I got 2 half hour visits last week wearing full Ppe gear I couldn't hug or kiss her and it wasn't in her own room which I think was awful. Tho she has vascular dementia the manager told me that my mum was very confused and when she is talking all her words are mixed up so I have to guess what she is trying to tell me it's so sad when I look at her eyes she just looks lost dementia is so cruel disease I just wish things were back to normal so I can see her more and be able to help her more I no the staff are fantastic but I'm her daughter and I think she is starting to forget me
I'm truly devasted but I need to be strong for her.
😘 😘 X

It is awful to say and I feel guilty saying it but my wife died of vascular dementia, She was 72, once so beautiful and charismatic. The thought of not being able to visit and see her, hold her hands and kiss her cheek would have broken me. Until the last wee that she died she always remembered me and had a lovely smile. I am so sorry for ll you suffering relations. All I can say is remember the good times you had

My Mum also had dementia and passed away in April of this year I feel your pain it is beyond me to understand what these poor woman suffer my mum was in and out of hospital all over last Christmas and the new year she just did not want to eat so in the end they could do no more I was fortunate that I stayed with mum to look after her with the help of equipment and Carers in place I could give her the attention she craved although bedridden I would get the occasional smile and was left with a little bit of mum when she passed I know i did all I could for her ,I am sure you are doubting yourself with the situation you are in and it hurts I feel for you i dont know how i would have coped not seeing mum in her last days and hope you get to see more of your mum before that time comes ,at first I was ridden with guilt because I wanted her to pass in the end to rid her of the hurt and the indignity and confusion she was going through and it has helped me to help other sufferers around me I hope you get to spend time with your mum you are in my thoughts

Janes poem really struck a nerve for me as unfortunately due to covid and the inforced but necessary lockdown I lost my husband on Easter Saturday. The home that he was in was amazing but he just stopped eating and drinking and not being there I couldn't help persuade him.
I wish her, her family and especially her mum all the love they deserve.

I am lucky. Mike, my husband loves all his carers and he has not deteriorated as far as I can tell. They do much to keep him stimulated and cheerful.
It is difficult with Skype as he lacks verbal
Articulateness. So I play music at the same time and he responds very positively and becomes very lively and chatty. It also gives us a talking point.
I Skype him every day For about an hour and although he misses me Because of this he is not forgetting me or the sound of my voice..

Jane, I too write some poetry and I feel as if your poem is for all of us. My mum is suffering in the same way as yours. Huge deterioration during lockdown, vascular dementia worsening, garden visits almost hopeless, hearing aid situation, hardly any sight. Significant weight loss. It’s a cruel world and a cruel disease that we are all powerless to change. Thanks for sharing your poem.

Jane, your poem moved me to tears. My Dad has vascular dementia and been resident in a care home since December 2019. Visiting by appointment has just restarted but I can only visit once a fortnight because of course lots of relatives want to see their loved ones and there are only five, 30 minute slots day. Each time I have visited I see staff coming and going (popping to the local shop), so why can't next of kin do the same, with testing and PPE? When i visited my Dad yesterday he was so pleased to me, he still recognises me and I am so grateful for that. Who knows how much time we have left. Dad has been taken to hospital 3 times during the lockdown. We have tried to do video calls but with little success. I call the home regularly but end up speaking to a different member of staff each time and receive conflicting information. I do wonder if it suits the care home not to have visitors around as we have had ongoing issues with the standard of care.

All of these stories resonate with us our mum was 95 this month she has been in care for 6 years she is virtually blind and almost deaf , depending on which carer attends we have been able to see her through the window but we need a carer to stay in the room & open the window wider. Our mum hasn’t been diagnosed with dementia but she suffers from anxiety and has been hearing music, voices and seeing people for a long time. Some staff say she shows all the signs of dementia and as there have been a lot of temporary staff who don’t know her or us we feel they have just dismissed her symptoms. She’s been tested twice positive for COVID but with no knew symptoms, considering she has COPD this is amazing. She spent a month in hospital with an unrelated infection it was hell for us not being able to visit, she was moved 4 times & has lots of unusual allergies, we are usually able to tell them what she can’t tolerate as they always ignore the notes we send in, as expected I had a Doctor call me at 10pm because she was itching. Since returning to the care home her mental health has deteriorated we visit through the window every week and are literally watching her fade away, the care home manager has not been on site since March due to health issues but no-one told us officially and they are not always telling us of important changes to mum’s health & mental state. This is affecting all of us we are a very close family & daily visits were the norm, there is no stimulation for her as far as we can tell and being unable to see or hear very well we need close physical contact, if we were instructed to keep our distance there would be no point in us going back in. Early on I wrote a note for mum to explain as best I could hoping the staff would read it to her, mostly she seems to understand the situation but not the severity we lost a close family member and can’t tell her it is heartbreaking when she asks about him to have to lie to her. We are all in the same hellish position I feel for everyone going through this too.

I am currently fighting to gain an indoor visit to my mam who has been in care for 5yrs and has dementia . Her large family used to visit her daily and she thrived on these visits, now she is deteriorating rapidly after being in lockdown since 12th March. Window visits are difficult as she is deaf and it’s not ideal trying to converse through a 2inch gap. Her physical and mental health have both been badly affected and she is now starting too forget her family. I even volunteered to help at the home but my offer was declined. I can’t understand why a relative can’t be allowed indoor access when the staff go home daily to their families, go shopping , also some also have second jobs!! How is this preventing the virus from spreading!
If my mam dies during this lockdown I will never forgive the management or the government as in my opinion this should be called Lockdown Euthanasia

Absolutely heartbroken reading this as it strongly resonates with me. I’m in exactly the same boat. My dad has vascular dementia and before what is now the new dreaded ‘C’ I visited every day after work and then took him out on Saturdays and Sundays. Prior to him going into the home I was his main carer and so I’ve gone from that, to visiting everyday at the care home to nothing, I have had the odd few visits from outside but I’m made to sit 3 metres away at the end of a garden table and with a mask on. He can’t understand me and can’t understand why I’m wearing a mask and can’t go inside. Sometimes my visits have had to be cut really short because he’s just been too cold. I’ve openly wept leaving him at these times knowing that I won’t get to see him for another week. I live in Greater Manchester and now haven’t seen him for nearly 3 weeks because of local restrictions. It’s absolutely killing me. I speak to him on the phone and I’ve done FaceTime but it’s not the same and it’s so hard to have a conversation (I don’t think he knows it’s me at times). People say it’s better that he doesn’t know what’s going on but it’s not. He’ll say things like, ‘I’m going to have a day out with you tomorrow’ and I’ll have to explain all over again why he can’t. Does he think I’ve abandoned him in there? What is he thinking? I need to hold him in my arms and I would do anything to do that. If it meant not seeing anyone else in my life I would do that. I am utterly depressed and as my dad’s mental health is declining, mine is too. They’ve told me his dementia has got worse and he’ll be a different person when I get him back. Will I get him back? He’s very hard to understand these days but i do get moments where he says a sentence I can understand. He told me he said he was going out to see me at my house and they said he couldn’t go. - that was like a knife through my heart. I want my dad back and I’d do anything the care home asked if I was allowed to go inside again. I can’t sleep, keep crying and breaking down. I feel overwhelmed at the thought I’ll never be able to hold his hand again and can’t see the light at the end of the tunnel. For those going through this, my heart is with you and your loved ones ❤️