Real stories

Being a keyworker and carer during coronavirus

Heartbreaking does not describe it. My dear sister has Alzheimers and has been in a home for over three years. From lockdown on 9 March I have emailed weekly ito ensure she is well and receive a short reply. I contacted the owner and said that more should be done to keep relatives up to date. A newsletter once a week perhaps and not only on social media....not everyone can access that. Since then there have been a few photos (on Facebook!). Also a window to talk through. I was there like a shot, but it was a difficult conversation mainly chatting to the carer. My sister said she knew me and her niece, but I doubt it. I fear she has forgotten us.
With a husband with stage 4cancer I have resigned myself to the fact that although I try to see my sister weekly I may never see her again and my promise to always be there for her (no other family) will possibly not be fulfilled. I have no complaints about the care, but I do feel that when the doors were locked it was almost as if the relatives were overlooked. We do not need to see posts on Facebook about all the thank you letters /gifts to the staff, we know they are amazing and working in desperate conditions . We need (for our own mental wellbeing) to see evidence of our beloved relatives for whose care we are paying vast amounts of money. There are three floors and my sister is on the top floor so there is no chance of waving to her and my biggest worry is that she does not understand why I appear to have abandoned her.

I totally get Tony's situation and empathise more than you can image as all he thinks and/or fears is true. When I was warned that the home where my very close relative resides was going into lockdown for at least 3 months, I immediately applied to become a volunteer. I felt my relative would deteriorate prematurely, mentally, emotionally and physically and the impact on both of us would be detrimental. That filled me with horror, more than the threat of coronavirus (sorry). I am on my own so could promise to self-isolate (and I am less likely to bring in coronavirus than staff members). I am fully 'protected' with face-mask, gloves and apron (changed each time after a visit to a resident). The home has no coronavirus, thank goodness. I feel very privileged that I can see residents and help where needed either with a chat, doing a cross word, enable video calls, all sorts of activities, simple physical movements, singing songs. It is energy zapping but extremely rewarding and I feel almost like saying that the disease is cruel, but lockdown and as a consequence the lack of social intercourse is more damaging. What in my opinion has been lacking in general is a holistic approach.
My comment may not be uplifting to many of you but please note that I am totally on your side and totally with you. Just a last suggestion, video calls are great but some do not understand (e.g. why is my child on TV); little notes with a photo of yourself sampling doing something (please write on the back your name and how you are related or place - a carer/volunteer may not know and it opens up the opportunity to ask the resident: what can you tell me about ....).
Sending you all love, light and peace.

I have been facilitating meetings so relatives can see their loved ones but it’s via a window and masks are worn .The reassurance is heart warming but emotionally it’s tough not to hug and also the mask is a barrier. However relatives and residents are reassured .

I so sympathise with all these people. My mother had Alzheimers and lived in a care home....I would visit as often as possible - usually twice a week and she still recognised me and always said she lived for my visits. I went to see her on 23rd March before the care home locked down but could not bring myself to tell her it would be 12 weeks before my next visit....she would have been so upset. I knew I wouldn't be able to communicate virtually with her as her sight and hearing were not good enough for that. Then, 3 weeks later, I got the dreaded call to say she had passed away...........not from the virus but 'natural causes'. I suspect she felt abandoned and gave up........I will never know for sure. I am just so sad not to have been able to be with her and say goodbye....................and suspect I am not alone.

I have been through this! My son and I said goodbye to my wife in March just before lock-down began. We had separately realized that this might be the last time we saw her alive and so it transpired. She died on 18th May. She was diagnosed with Alzheimer's in 2009 at the age of 64. She entered residential care in August 2014. She had been in the vary late stages of the disease for some months when she died. I used to visit every day to feed her lunch and she would usually react to my voice, chattering wordlessly, nodding her head and sometimes chuckling. She did this a couple of times on video calls in the past few weeks. I would have been allowed to visit during the last days of her life but as I am shielding I was not allowed out.

I empathise with everyone who have posted comments. My wife has dementia and went into a Care Home in early March. She was then transferred to a mental hospital to help with her condition. I do have video contact with her and this does give some comfort but have not otherwise seen her for three months. The staff are excellent and no complains, I just miss being with her and having a proper discussion. It is also upsetting that we celebrate our Golden Wedding anniversary tomorrow (June the 6th) and will be apart.
I fully understand the reasons for not being able to see her and have great support from family and friends but she is always in my thoughts and feel helpless.

Whilst I can fully understand all the points that have been made, I would like to give a very positive point of view about the care home my husband went into only one day before lockdown began. . It was unexpected move but I had no choice. I had 3 hours to explain to my husband as much as I could and like others I’ve not seen him since that day. However, the staff at the home have been amazing helping my husband settle in. To begin with he was distraught, phones calls all day wanting to go home. It was so upsetting for everybody but gradually with the staffs’ kindness he now is happy, he has activities, company, a garden, all things I could not provide. I write an email letter to him each day, he FaceTimes me when the staff can arrange it and no it’s not an ideal relationship but I thinking that as long as he is settled and happy, my feelings are irrelevant. The staff have so much to do without having to worry about visitors. I realise I’ve perhaps been very fortunate but I cannot criticise my care home at all.

I am in a similar situation, my husband went into a nursing home with dementia in November 2019, that was very hard but at least I could visit most days which helped me considerably. I have not seen him since March 15th and sometimes feel desperate to see him. Zoom calls are difficult for him and I feel I have lost contact with him. I am so concerned he will forget who I am. We lived together for 51 years.

My mom 86 had dementia and fell 4 weeks ago at home where we were cocooning her, she had to go into hospital, my mom went in ambulance all on her own as we were not allowed to go with her or visit her. As she was used of me and my sister caring for her every day when she went into hospital she died 4 weeks later and not from covid but I firmly believe it was from the isolation of not seeing her loved ones and not knowing what was going on. Through totalling fighting I got to see my mom the day before she died as she was in a private room, at that stage she was unconscious . It breaks my heart that this pandemic took the last 4 weeks of my moms life from us and I will always be bitter about this. Feeling heartbroken 💔

I feel exactly the same and maybe worse as my mum was only just settled into a care home just before lockdown . She must feel we’ve abandoned her , it’s awful to not be able to see her , we tried video calls but she couldn’t understand it and talked about us to care home staff as if it were a photo . So all we can do is a 2 minute phone call every day , short because there’s no 2 way conversation , she says yes to every question and we run out of things to say . Sometimes she doesn’t hear or understand and sometimes she asks what time am I coming , it’s heartbreaking !

I too am in a similar position to Tony. My Dad died in December last year,, my mum has been in residential care since April last year. Her needs have now escalated and she needs to be moved to nursing care.. We have not been able to see her since March and she doesn't understand what is happening via video link. I am a health care professional and have offered to provide my own ppe not to use vital supplies and would of course follow strict guidance. I too fear I may never see my mum alive again... 😢

Both my parents have suffered with dementia. I am so glad that my Mum died a year ago. I and my Dad would have been desperate to be with her had she been in her nursing home at this time. I am so very thankful that my Dad can be cared for in his own home and that now one- to- one visiting, albeit outside, and keeping socially distant is possible. Just to see one another and be in the same space is absolutely vital for his wellbeing and mine. Surely it should be possible, in the context of a care home, to take precautions such a having a PCR test in advance of visiting , wearing PPE, meeting in the garden etc for loved ones to visit.

I am in exactly the same position as Tony and have the same concerns and worries. I am also very disappointed that neither the Residents or the Care Staff have as yet been tested at my Wife's Home. I thought that from the recent high profile publicity, testing in Care Homes was supposed to be an urgent priority. Why is this not happening as we have ben told???

Had the Tory government not ditched the Cygnus report in 2016 which stated that the NHS would not be prepared in the event of a pandemic, many lives would have been saved both within the NHS itself and the wider community. It was obvious in 2016 that Andrew Lansley's top down re-organisation of the NHS in 2010 with no consultation whatsoever with the professional bodies within the NHS was catastrophic - professionals in any field know best about their profession than any government minister who fails to negotiate with them. Privatisation has affected the overall distribution of essential PPE protective clothing and equipment. No doubt "Getting Brexit Done" was of more importance at that time which will benefit the few and not the many. And who were the architects of Brexit none other than Boris Johnson and Dominic Cummings.
So many are now suffering heartbreak in so many ways. People dying without mutual comfort from their loved ones. This also applies to people living in nursing homes and those with dementia deprived of the love and close contact and comfort from their loved ones. Had this country the 5th richest country in the world been prepared for this pandemic we would be telling a much different story now.

This is a situation many people find themselves in. My parents have been married for 60yrs next month and have never been apart for this long. As they are both in their 80’s and dad is in full time care time is precious. It’s difficult them been apart. Mam is making herself ill with worry. There has to be a way of them been able to se each other soon in some way or another. Looking and waving through a window is not enough.