Your experiences of loneliness and isolation in the pandemic

[HarrietD]

Hi everyone,

Our Programme Partnerships team is working with the Department of Culture, Media and Sport as part of their Tackling Loneliness Network. They are gathering evidence and looking for recommendations to give them.

Please feel free to share your experiences of loneliness and isolation since the pandemic started. If you have any recommendations for the team to pass on to the government, please let us know.

We know that this is a big issue for so many people at the moment. Your experiences will be really valuable in helping the team to put together evidence of the impact the pandemic has had on loneliness and isolation.

Thanks

 

[Grannie G]

Thanks @HarrietD

I thought I was doing well, keeping myself safe, using common sense, adhering to the guidelines re social distancing, wearing a mask in shops and on public transport and hand washing.

I`ve always felt self contained and independent and do not feel particularly lonely because I have daily contact with family and friends albeit by phone, texts or zoom.

I have face to face contact with my son and also with my adult grandchildren until they left to their respective lives in other cities.

I`ve had visits from one or two friends , in the garden during the summer and am now allowing them in the house, one at a time but keeping our distance.

I have chiropody at home and help with cleaning, all sensible and well managed.

What I have no control over are what I believe are anxiety dreams. These are quite usetting, even though I recognise them for what they are because they nearly always include worrying happenings with my husband who died nearly seven years ago.

 

[Whisperer]

Strangely shielding with my mum since March has produced odd emotions which have taken me time to recognise. I attended a carers group on my own, mum thinking nothing is wrong with her, but it last met in February. I use to work two nights a week in a supermarket but that had to go in March as it was just to risky with Covid19. Initially hopes of a vaccine in my mind meant I could tell myself this was all temporary and matters would soon get back to how they were. Now I realise by the time a vaccine arrives very likely I will be unable to return to work due to mum’s ongoing decline.

I started to notice I was “falling out of the world” for want of a better phrase. I now have Skype siblings not flesh and blood ones. When we have to go out to see the GP practice nurse I see the world, I successfully relate to it, but it just at times feels unreal. Best way I can put it is like watching a film, I am one step removed from events.

My conversations are now virtually all with mum so they are all shaped around events long ago, mum placing me in some before I was born, dealing with her confabulation about what she still does or believes happened in our lives yesterday. I realise now the carers group and work were very important to me at the time, helping me in dealing with mum’s developing condition. Now I realise beyond this forum I have no support at all in dealing with mum’s condition, trying to help her cope with it. The world just sailed off overnight very largely.

I realise I have to reinvent my shrunken world, rearrange the furniture, change priorities. This forum has become much more important to me, reading how others are doing. When mum is settled I have rediscovered reading, listening to music on headphones sitting on my bed, taking them off periodically to check mum is still gently snoring. I knew I was in serious trouble when I started taking pride in doing housework. I have many conversations with myself, but regrettably they are somewhat predictable in outcome.

Here we are early October. Covid19 exploding across the country, slowly moving down towards the south. The news is full of it, Trump this Trump that, etc. Never felt more removed from it all, more isolated, more lonely. Walk up the alley mum? Negotiations are entered into, bribery offered in the form of a mug of tea and chocolate biscuit afterwards. Decide what we are going to eat today, more negotiation and that is the main decision of the day. I look forward to Tuesday finalising the Internet grocery order. Wednesday is mum’s regular shower day so that is very much a get through day. Friday our treat day and a run out in the car. We do not stop anywhere nowadays, we just “watch the world go by” an old saying of mum’s.

Some dark moments I could just sit and cry. Dreading when this might be over and my siblings come and visit mum, only to realise how much of her has gone walkabout since they last sat with her. Easy for me to workaround confusing moments for her on Skype, not so much in the harsh reality of direct contact. Please, please mum still recognise them. Will it be possible to enjoy a laugh at work, or just have to return my uniform and say goodbye. It sits on my bedside cabinet for now. Use to be a positive to aim for, now at some point it feels as if it is mocking my hopes of a return to where we were. Just another reminder of isolation and loneliness.

Now here is the question. Am I just lonely and isolated sharing mum’s increasingly confusing world, or am I passing over a line into depression, losing touch with reality? In truth I do not know. Mum has a teddy she sleeps with. Often I hear her talking to him as she settles for the night, not madness just something she has always done. I wonder sometime should I strike up a conversation with this all knowing teddy bear? Now I know I might be losing it.

Not sure if this rambling post is what others are seeking. Seems to have done me some good posting it. If it encourages others to be honest and hit those keys then some good has come out of it. Best wishes all of those who read these words, rambling words I admit, of an isolated, lonely, uncertain what the future holds carer.

 

[kindred]

Talking to teddies is normal, believe me! Teddies are sort of repositories of love and memories, why not talk to them!! I certainly do! these days it is all about getting or feeling reassurance where we can. I so appreciate your post. Thank you with all heart. We have never been through such a terrible time as this and thank God for all of us on here.
With love, Kindredx

 

[marionq]

I’m very independent and used to keeping busy so I thought I was doing well after my husband died in October last year and on into the current catastrophe. In April his 85 year old sister totally tipped over the edge as she couldn’t understand what was happening with empty streets and closed shops. She was terrified.

To cut a long story short she was placed in care permanently and in the absence of any near relatives willing to be involved I had to deal with all that entails. I then had to pack up and empty her flat.

By the time all that was over around May/June I felt depressed and ill yet I knew it was just stress and the current circumstances. This was a new and very disquieting experience for me. She in the meantime has flourished. Put on weight, is occupied and has company, and once deputy ship/guardianship goes through the LA will be responsible for her and she will no longer be my responsibility.

 

[MaNaAk]

My worst day was dad's first anniversary in June but I kept myself occupied by going out for a walk, shopping and talking to friends on the phone.

MaNaAk

 

[Whisperer]

Talking to teddies is normal, believe me! Teddies are sort of repositories of love and memories, why not talk to them!! I certainly do! these days it is all about getting or feeling reassurance where we can. I so appreciate your post. Thank you with all heart. We have never been through such a terrible time as this and thank God for all of us on here.
With love, Kindredx

Dear @kindred

May as well fully confess my sins now. Mum talking to Crawford the bear about her getting up now the pills and mug of tea are done. I put on a voice for his reply. “That’s right you old bag get up as you are keeping me awake. If I do not get at least 23 hours sleep a day then I am good for nothing”. Mum jokes back “that’s enough out of you Crawford or your see the inside of a charity shop“.

We have shared this little joke as part of the morning pills ritual for many years. Oh mum why can you remember this little joke, but not what day it is, have you been to the toilet, that you have a drink on your side table, etc. Sadly one day it to will go but not today. I fully understand the mental processes and what Dementia is doing but it still hits home when I reflect on matters. Lesson learnt do not reflect to deeply just pick up and run with what you have left.

 

[lemonbalm]

That is a lovely and poignant image which made me smile and cry at the same time @Whisperer . It reminded me of the good visits I've had with mum at her care home. I often took magazines as back up and would say "hang on mum, I'll just put my specs on" , then put them on top of my head and we'd say "there, that's better". It made her fall about giggling every time. The bad visits could be appalling, shocking, distressing, traumatic and I don't miss those at all but I do miss the good ones. The carers tell me that mum still has her sense of humour, when she's not threatening to rip the skin of their knees (I'm afraid I had to laugh at that - such a specific threat to make!)

 

[kindred]

Dear @kindred

May as well fully confess my sins now. Mum talking to Crawford the bear about her getting up now the pills and mug of tea are done. I put on a voice for his reply. “That’s right you old bag get up as you are keeping me awake. If I do not get at least 23 hours sleep a day then I am good for nothing”. Mum jokes back “that’s enough out of you Crawford or your see the inside of a charity shop“.

We have shared this little joke as part of the morning pills ritual for many years. Oh mum why can you remember this little joke, but not what day it is, have you been to the toilet, that you have a drink on your side table, etc. Sadly one day it to will go but not today. I fully understand the mental processes and what Dementia is doing but it still hits home when I reflect on matters. Lesson learnt do not reflect to deeply just pick up and run with what you have left.

Oh thank you with all heart for this, so loved reading it. Yes, absolutely, pick up and run with what you have ...I volunteer in a nursing home and each week do a Shakespeare session ...
The residents nearly all have severe dementia but their memory of famous quotes is stunning!! I try them out completing quotations like friends, romans, countrymen, lend me your .... they fill in the blank and I then try to teach them the rest of the speech. They cannot memorise it but the next time they will help me with the whole speech, It’s such an uplifting thing to do!
Warmest and thank you so much, Kindredx

 

[anxious annie]

The pandemic has had a huge impact on the loneliness and isolation of residents in care homes. They have been imprisoned since March with no prospect of release for a further 6 months. Their crime? To be elderly, frail, many with dementia. Their human rights denied. Residents are isolated from their family, some care homes denying even window visits, and many more scared of the prospect of litigation if they allow indoor visits. The government is happy to blame the care homes for not allowing visits, when in reality they need to support care homes with testing family members so indoor visits can take place safely ( not behind a Perspex screen), but where family can actually hug each other. I am beside myself with grief for my mum in her isolation. She cannot speak up for herself so I have to do this for her.
Rights For Residents

 

[jennifer1967]

i know my husband is not in a care home but he was shielding from march to august so although i had him at home, he wasnt allowed out, nobody was allowed in. i had to forever keep the bathroom anti-backed along with contact points, door knobs etc. i had responsibility to go out early in the morning if we needed anything. i had the fear of coming into contact with virus and giving it to him who with copd had a real likelihood he wouldnt survive.trying to get others to understand what shielding meant and not coming in. his spirits were down and getting out of bed was a challenge. not able to go out and you are not allowed out are different. he had no hope and by august he was going mad. now there feels like a big possibility he will be asked to shield again which we are dreading.i know that in care homes, it was the worst and an inhumane and rigid set of rules leaving residents to deteriate without family but shielding had its own set of problems

 

[Janey B]

The pandemic has restricted my life immensely. My husband is not affected by any of it. He is totally unaware of the virus and does not chose to socialise or go out, he is happy at home.
I on the other hand am going quietly crazy. I miss meeting with friends, company, conversation and going out. I miss my children and their support but most of all I miss my grandchildren.We face time regularly but it’s just not the same. Not being able to see and hug them is like a physical pain.
I am like a single person, I have a partner but he is so lost in his own world that he is no company at all. If I was a single person I could bubble with one of my children and spend time with them but I’m not so it’s not possible.
I understand the bubble was introduced to prevent loneliness for single people well I consider myself single on one level and feel something should be done to support carers/partners especially where dementia is involved.
We are allowed to go out with the people we live with but if they are not able or willing.Where does that leave us.
I am so lonely and bored despite FaceTiming with friends regularly I miss the physical contact.
I live in the north of England and suspect further lockdown measures will be taken. It’s depressing and unfortunately there seems no end to it or anything that will be done to improve life for carers.

 

[Whisperer]

I have just read the post by @Janey B and I can feel her sense of isolation in her words.. This afternoon on Sky news there was a university professor also looking into loneliness, caused by earlier lockdown measures, on behalf of the government. His report is scheduled to be ready in June 2021. Yes folks you heard that right June 2021. Remember this report is into the problems earlier lockdown measures created, no mention of suggested solutions.

I try to be a fairly positive person, glass half full, etc, but this is all starting to look very grim. October not even half done, the worse months still to come, but carers are just not being considered at all as far as I can see. Complete rugby scrum to safeguard pubs, just wish some of that effort and sense of purpose was coming anywhere near adult social care, a part from another meaningless promise this week to fix it.

Sorry long day with my mum, very repetitive today. Maybe my good humours are exhausted but matters are starting to look very grim.

 

[anxious annie]

I can appreciate how difficult it must be for those shielding too and their families @jennifer1967 . I think you too @Janey B should be treated as a single person and allowed to bubble. People living with someone with dementia need to be supported too. Unless you've been in this situation you just wouldn't imagine what it's like. There ought to be those working in social care who could put this point to the government.

 

[jennifer1967]

I can appreciate how difficult it must be for those shielding too and their families @jennifer1967 . I think you too @Janey B should be treated as a single person and allowed to bubble. People living with someone with dementia need to be supported too. Unless you've been in this situation you just wouldn't imagine what it's like. There ought to be those working in social care who could put this point to the government.

im lucky the shielding has paused in august but thinking about staying in again although we are lower rate but do have 2 universities in the city.

 

[HarrietD]

Thanks so much everyone for being so open and honest about your experiences of feeling lonely and isolated during this time. It's very much appreciated.

 

[Janey B]

Thanks so much everyone for being so open and honest about your experiences of feeling lonely and isolated during this time. It's very much appreciated.

It’s been good to be able to vent ?

 

[Janey B]

Just another comment on the effect of Covid on Carers and people with Dementia. There has been a lot of publicity on the plight of people in care homes.
It is heartbreaking and if my OH was in care I truly do not know how I would cope. Not to be able to see your loved one is intolerable and I think unnecessary. It just needs organising properly nurses work with COVID patients safely (most of the time I guess) so why can’t testing and protective equipment be used to facilitate this. Care staff are going in and out of the homes and living their lives in between so why not allow loved ones to visit . Sorry got side tracked my point is my OH is housebound and as we can not have people in the house his children can not visit him This is upsetting for our children ( he is forgetting them) and they want to be able to spend some quality time with him. It’s the same as visiting in care homes but no publicity about us poor people locked in at home.