Geraldine

Brief Outline:

Geraldine was in hospital and ICU with Covid for 22 days, which include several days on a ventilator. Her main motivation to get better was her daughter, who was in hospital herself. Covid meant that they could not see each other whilst both critically ill. Interviewed for the study August 2021.

Background:

Until their respective hospital admissions, Geraldine and her adult daughter lived together. Ethnicity: Asian British (Sri Lankan).

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Onset

In November 2019 Geraldine’s daughter, who had been diagnosed with a brain tumour 19 years ago, aged 15, was admitted to hospital after a fall. Geraldine saw her in hospital regularly, until she herself fell ill in early April 2020. She had a cough, and her brother-in-law, who lives in the USA, advised her to see a GP. The GP suggested that she call 111, who in turn recommended she call 999. The ambulance came and took her to hospital. Geraldine thought at the time that she was only going to be in hospital briefly, so she did not take her phone or any clothing, other than the pyjamas she was wearing.

In hospital

Geraldine remembers very little from the time the ambulance arrived at the hospital onwards. Later she was told that her heart had stopped. She was in a very bad way: “it was touch and go”. She was in a medically induced coma, ventilated, and had a tube going into her neck (called a tracheostomy).

Without her mobile, Geraldine had been unable to contact anybody from hospital before she was intubated. Her brother-in-law eventually contacted the hospital. With Geraldine’s daughter also in hospital, he became the point of contact for communication with the hospital. He was updated by the clinical staff about how Geraldine was doing. The family decided that it would be best if Geraldine’s daughter knew no specifics, so as not to upset her.

Waking up from the coma

After two weeks Geraldine awoke from the medically induced coma. She found herself in a hospital gown, with a nurse bringing her breakfast. At this point she had no idea that she had had Covid, nor why she was in hospital or why she could not go home. “Nobody told me anything”. Although this surprises her now, it did not occur to her to ask. When the doctors saw her on the ward round, and asked her how she was, Geraldine answered that she was fine because she wanted to go home and see her daughter in hospital. When the doctors returned the following day for their ward round, Geraldine asked whether she could go home again. They explained Covid and her condition to her, and that this required her to stay.

A nurse gave her a shower the next morning. He washed her hair. Only then did Geraldine realise how weak she was, and why she was not ready to go home yet. Nevertheless, she felt she would be better off at home as she could not sleep in the hospital as the ward was so noisy. It was difficult to eat regularly, which she needed to do because of her diabetes.

In those initial days after waking from the coma, Geraldine felt like she could not think; it was like there was “a fog in [her] head”. She had no memory of how she got to hospital or the phone number of her brother-in-law when she wanted to make a call, which she usually knows it by heart. Geraldine was alarmed by her gaps in memory. She told herself to remain calm, and her brain told her to “take baby steps”. Then, slowly but surely her memory came back: about her calls to the GP, 111, 999 and the ambulance.

The general ward

Geraldine had a fall in the bathroom on the ward. She hit her head and landed in front of the door on her right side. She could just about shift aside so that the nurse could come back in to help her. She reassured the nurse it was not their fault, and that she had felt like she could do it, but her legs and knees had no strength in them. She was given a walking stick then and instructed how to use it. Geraldine felt motivated to get out of hospital as that would mean she could see her daughter.

When Geraldine was ready to go home, it was a bank holiday. Because there were no ambulances this delayed her discharge from hospital to home by two days. She was discharged home with the walking stick.

After leaving the hospital

Although she had been in hospital 22 days, it felt like she had been there for months. When Geraldine came home, she could not climb the stairs. She felt “like a ragdoll”. The ambulance crew helped her into her chair on her landing.

Cheered on by the physiotherapist, Geraldine trained herself to walk again by taking a few steps for the first week, and then a few more in the week after. Once she was on one level, she could walk perfectly, but stairs caused her to pant. Initially she was scared of the stairs, but “her brain encouraged her to push [her]self”. She used the walking stick for the first 2 ½ weeks, and slowly gained more confidence on the stairs. At the time of the interview, about 18 months after her discharge from hospital, Geraldine does not have any professional support. She was offered someone to help her do the shopping, but she declined as she prefers this help to be given to somebody who needs it. She wants to become more independent again.

After her discharge from hospital, Geraldine saw her daughter on skype a number of times and was asked to come in for a visit once. Her daughter’s eyes lit up when she saw her mother. Geraldine was able to stroke her head, and to tell her she was sorry she had not been able to come see her. She passed two weeks after Geraldine’s discharge from hospital. It is hard to live without her.

Compared to how things were pre-Covid, “Everything is different”: Geraldine has to force herself to eat, to prevent hypos. What she feels, thinks and does is different. “It’s like I am a different person”. She says that is not recovered but recovering. Geraldine is still hesitant about going out of the house, although she does, carefully, wearing a mask. But Covid has also has positive effects: Geraldine finds herself more assertive in her close relationships, and now focuses on positive things. She is happy in her skin. Her head is her “invisible teacher”. She wants to do things her way, and in a positive way. She could have died, but did not, and is therefore grateful to the doctors, and to God who has brought her back to life.

After waking up from ventilation, Geraldine did not know what she was doing in hospital nor how she had gotten there, which scared her.

You said you remembered having breakfast and that nobody had told you that you had Covid, so you had no idea why you were there?

Yes, because I didn’t even ask. Now, looking back, I’m thinking to myself now, when I came back home in May…sorry, April, why did I not ask my nurse why…what am I doing in the hospital? What really happened to me? It didn’t occur to me to ask. And then the thing is…the worst thing was I cannot think every time. My memory was bad. And then my…I heard my brother, my youngest brother was talking because I recognised his voice. But then I remembered that is my…then I remembered his name and then I told my nurse. She was in charge of the ward. So, I said oh [interruption]…

You were saying you couldn’t think. What do you mean when you say that?

Memory. I feel like I switched off my memory. I can’t remember things. When the nurse asked me, when she was on the phone with her, I saw her, she’s got a mobile, so I said can I borrow that mobile of yours? I can ring my brothers. And then she said to me do you remember his phone number. And then I had to think a while and then I said I don’t think I know. And then my brother was hearing it and then he said to me…I said to her can I talk to my brother.

So, then I think she asked did he want to speak to me and then he came on the phone to me and then I said to him that time can you ask my neighbour…I’ll give you a shopping list, whatever I can remember at the time. I just mentioned bread, milk, butter I think, I think banana or yoghurt or something. I remember telling a few things, but I couldn’t remember more. I wanted to say just buy me some salad or something, some pasta or something. But anyway, he got…he’d written it down. He said I’m writing it down. I said I can’t even remember my home number. I told him that. I said normally I remember everybody’s phone number.

And I was frightened. It invited some sort of fear come into me, to find that I feel like I’m not here. It’s like it’s not real to me. The feeling, that feeling if you like, it’s like fear getting into me, how is it I can’t remember. If I can remember my daughter, my daughter’s name, I can remember my name; how can I not remember my home number, landline? Mobile; I can’t remember my mobile number. I know it is beginning in something in 0-7-9, but I can’t remember the rest of it. So, it is really frightening to me. It is really alarming me. And I was telling my brother I can’t remember my home number and he said don’t worry, it will all come back to you slowly, when you recover. So, he was more calm than me.

Geraldine did not realise how weak she still was and wanted to go see her daughter, who was in another hospital.

That’s the first thing I tested: whether I can move my legs. And I could move my legs. So, if I can move my legs, sitting down, maybe I can get up and walk out. I can discharge myself. That’s what I thought. And then the doctor said…asked me how am I, so I said I’m okay. And then he asked me several questions. I don’t know what I said. And then I think I must have said I want to go home, and he said no, you can’t go. I was getting alarmed, and he said you can’t go. I said why, why can’t I go. And then he said you are not well. You need to stay some more. I tell you I was stubborn. I was very stubborn that day. I said no, I don’t want to stay; I want to go and see my daughter. She’s in the hospital. I want to go. He said you can’t go.

This is why you wanted to go quickly?

Yes. So that was it. So, I think from that day onwards every nurse, doctor, coming in, I’m telling them I don’t want to stay here. And I can’t sleep here. That’s it. I told them I can’t sleep here because they make a lot of noise. All the long corridor in the community, you know, hospital, they are… It’s a long corridor to walk anyway, from the ward to the door, the way out. And then I want to go home. I didn’t want to stay. What was the point of staying here? But anyway I, sort of, argued…it’s like I feel like I’m arguing with the doctor, which I normally don’t do. I was getting a bit annoyed. Why am I staying here for? The doctor said you are not well; you can’t go now. You, on the 12 April, I was telling doctor look, I want to go home. My home is nearby. I told him why don’t I just…I’ve got my freedom pass, I can just hop on the bus. I thought I will be able to just go, like how I was before. I can walk.

And did you at any point realise how weak and…?

I didn’t think of anything that day. That day when I woke up, I wanted to… All my thoughts, my strength, whatever was left over, geared to see my daughter.

And I thought I could walk out, and I didn’t realise. Actually the…because I was not using the stairs in the hospital anyway, they have lifts so you can go down and come up and it’s really easier. But I didn’t bargain with steps. With ambulance always taking the patients home anyway. Then they are [inaudible] because the doctors are saying it’s a public holiday. I remember it so vividly, even today. Public holiday, we can’t…because they had to pay for ambulance guys.

Yeah, so you stayed two days more.

That’s it. Two days more. I didn’t mind about two days more. It is okay, fantastic, I’ll be home. But I didn’t bargain when climbing up the stairs. Then [when I was discharged] I realised I’m in a bad way. A really bad way.

Yeah.

Maybe it happened to everybody, poorly Covid patients. I don’t know because I had arthritis, neuropathy, what other things…stuff going on, aches and pains. It’s only my legs that were weak. Very weak.

A physiotherapist showed Geraldine how to use a walking stick when going down and up the stairs. Geraldine was motivated to master the stairs by the prospect of seeing her daughter, who was in hospital at the time.

Some physiotherapist came, meanwhile, and then I told them that I had a fall. So, she said – very lovely nurse – she said to me not to worry, they’ll give me a walking stick to walk about. And then she said you can take this one home. It will be easier for you when you try to climb up, climb down. Ah, that’s it, physiotherapist. I told the physiotherapist I’m having this problem, I explained to her, because there was a fall now and I’m not able to do a lot of things.

And then she said she would contact this community service. They said they’d call me within seven days, I think, or maybe took a bit longer. One chap he called me, he said he’d give me a date when he can come and show me… Because I was saying I don’t’ know how to use the walking stick; this is my first time ever having a walking stick to go down the stairs, to do exercise. Because that will help me to do more exercise.

So, he showed me…he came to the house, he showed me how to do it and to hold the banister, take the walking stick this way, each step. And he showed me how to do that with the walking stick on the next step, hold onto the banister. And I did that. So, he said first seven steps, from my landing to the second floor, do that only those steps. Go up and go down. And then do that for several times. And then if you feel tired, you rest. You can’t do everything too fast. Just do it at your own pace, just do it and you’ll be alright and when you feel comfortable you go up to the next level.

So, I was…and then I followed all his advice, and he rang me up to find out how I’m doing. So, I told him that. So, I said I would like to go down - more forward, to the ground floor. And he said to me now, I’m becoming ambitious now. I’m getting a little bit more confident now, on the steps. But I can see…I remember thinking when my daughter had…after the brain tumour she was scared of the stairs. I was like that: scared of the stairs, going downwards. I told myself I might fall down.

But then my rational mind was telling me you’ve got a walking stick; you don’t have to worry about it. Because by this time I’m listening to my brain, what it tells me. So, I told myself that is…you know, it’s like it’s encouraging me to do…you know, slowly. Just take baby steps, telling me to take baby steps. I need that. So, the day came. It was, like, two and half weeks I’m doing my seven steps only, going up, going down. I was really huffing and puffing at that time, sweating a lot. And I’m thinking shall I give it up or not. But then I’m encouraging myself to do it a bit more so I can go and see my daughter, take a taxi and go and see her.

That’s all going on in my head when I came home, until I had the call. So, and then two and a half weeks I did that. I told myself next week, the following week, I’m going to go down the next 14 or 15 steps, and I did that. First, I didn’t want to do it. I thought no, I don’t want to do that. I was hesitant to go down. Then my mind says hold onto the banister, take one step at a time. So, I did that. The same method: putting the walking stick onto the step and then lean on and hold onto the banister. Slowly, one at a time, one at a time, I did that

And then by the time I came to the 15th step, 14th or 15th step, I gained a bit more confidence. I was thinking I did it. How did I manage to do that? And it looked like a mountain, when I’m looking up again. And then, I don’t know, I came down, now you need to go up, up again. So, I was doing each step like I did before. I’m telling myself I’m doing good. This is good for you, it’s good for your body, good for your arthritis, good for your back pain. Do it, do it, slowly, slowly. I went like that. So, I only did it twice and then I thought I’d better go and rest, so I climbed the next, last several, steps to my room and I opened my door, and I went in.

Yes, so as I said just now, I was gaining my confidence on the stairs from that day onwards. I was okay and then I remember telling this guy, the physiotherapist, on the phone, I was telling him, I said I gained my confidence on the steps, with the stick. I followed all your advice. And then I said thank you. I thanked him for, you know, helping me with that. And he said to me that if I ever need any further help in the future, to contact them. They will assist me and everything.

Geraldine reflected on how Covid had “changed everything” for her. Since her admission she struggles to go out spontaneously.

So, I was panicking. I don’t know for some reason I was panicking to go to this place, even though I used to be in [place]. I used to work with children in [place]. But I was thinking to myself why am I panicking? There’s nothing to panic… You can go there, you’ve got a freedom pass, you can…you know you don’t have to…it’s easy to get on the bus, it’ll take you to the destination. And I was hesitating. It’s like two days prior to that I want to go there, between Wednesday and Thursday, I think, the weather wasn’t too bad then. A little bit of rain but I could have taken an umbrella. But then I didn’t want to go. For some reason I didn’t want to go.

So, then I thought to myself, why don’t I go on Saturday. This is what I’m doing now. I don’t do it at least spontaneously. So, it's like hesitating to go out and then…this never happened before Covid. Mind you, I just normally get dressed, when my daughter was alive, I just get her dressed up and then we’d just go out. But after Covid things are different. Everything is different. Food is different. Food, when it comes to food, I eat it because I…I have to force myself to eat the food, which I want to stop having hypos.

So, I need to do everything like testing blood and whether sugar is up or down. And then, you know, just carry on with normal things. So, everything is different. What I feel, you know, what I feel, what I think, how I behave is different. How I, you know…doing things…everything is, sort of, not like how it was before. Nothing is [inaudible] nowadays. No, I have to think before I do anything. Even watching TV, only the TV.

Why do you think that is? Why is it all so different?

I have no idea. It’s like I’m a different person. It’s like I’ve changed in somewhat. I don’t know how. How could I change? This is me and I used to just talk to myself. I just opened the mouth and asked myself what am I doing? Why am I thinking like that? You were not like this before. You know, it’s like I’m telling…it can’t be Covid, can it? Because things are… But I find I’m a bit different. A little bit different, maybe not in a big, big way. I’m not a person who will go and talk with people or knocking on my neighbour’s doors or anything. I’m in my little flat, I’m, you know, thinking to myself you can do things. So, the time has come now for me to take charge of my life. I cannot be living in my past or past gone before. And, you know, this is your future, you come out of this Covid, you are recovered, you are recovering.

I came a very long way, now I think about it. Survived the Covid and I kept myself to myself, only went out when I had an appointment like a blood test and things like that. And then to get a bit of shopping on the net or outside, just for the exercise, went out, bring home a bag of food and then just stayed indoors.

Of course, and then I found out they are telling on the BBC, variant, Delta variant. And I thought to myself, my God, I have to be extremely careful because I know you can get Covid again. It’s not safe. It really is not safe to go out. But then I thought to myself no, don’t think like that. You wear your stupid mask and go out. You are protected, you’ve got your vacc… And then of course I had my two vaccines by then.