Nahied & Rani

Brief Outline:

Nahied spent 39 days on Intensive Care in January and February 2021, where she was mechanically ventilated. Nahied’s older sister Rani, was listed as next of kin, and communicated with clinicians about Nahied’s health. Interviewed for the study July 2021.

Background:

Nahied [45] lives with her husband, not far from her older sister Rani [49]. Rani is married with four children, and supported Nahied through her admission to hospital and her recovery. Ethnicity: British-Pakistani.

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Onset

Nahied was admitted to hospital in January 2021 after having what she and those close to her thought was an asthma attack. She had had asthma attacks before, but not like this one. In the hospital, Nahied was tested for Covid, and the results came back positive. Her husband later tested positive as well, although he showed no symptoms. Nahied, in contrast, become very ill and deteriorated so much that the clinicians decided to admit her to intensive care.

In the intensive care unit

Nahied does not remember much before admission to intensive care, besides the CPAP (Continuous Positive Airway Pressure) mask. She remembers taking a video of herself with it.

Nahied had intense dreams in ICU – some pleasant, such as the one in which she saw her deceased father again, some scary and terrible. She dreamt, for instance, that her sister was involved in an accident, that things happened to both their children, and that her ex-husband became very ill. Since leaving hospital some of these things have actually happened, which scares Nahied. She is most frightened by the dreams that have not yet come true, because she fears that they might come true in the future. She aims to speak to a professional about this and find some calm in relation to it. In Nahied’s dreams Rani was always by her side. Nahied remembers her physically being by her side too when she woke up after 37 days on the ventilator.

Communication between family members and clinical staff

Rani was listed as next of kin and became the point of contact for the hospital staff. She has a family of her own, which meant there were many demands placed on her at this time. The doctors called her every day with an update on how Nahied was doing. Rani communicated what she learned from the doctors and nurses in the hospital with other family members. Those family members then passed on the information to others to help share the work and time of keeping everybody updated. When information changed rapidly, some family members found this difficult to understand, and were unsure whether Rani had understood correctly in the first place. This was stressful for Rani too.

Rani found it hardest emotionally when the doctors told her that Nahied may not survive, and that they would turn off her life support. Rani was already planning her sister’s funeral, when the day after things suddenly changed; Nahied had started responding to the medications and was doing better. Rani was asked to come to the hospital, which she did with her son, to be at Nahied’s side when the clinicians woke her up.

Recovery

Nahied was transferred to a side room on a general ward, where staff was friendly and helpful, but the change from one-to-one nursing to having to buzz to get help was quite difficult. Nahied felt lonely on the ward. Communication between the two sisters happened via video calling.

Nahied learned to walk again with the help of physiotherapists, and speak again – first with a voice box, and then on her own. After some time on the ward, Nahied was transferred to a rehab centre, where she spent another 2 ½ weeks.

Nahied is unable to do what she was able to previously, such as climb stairs, walk long distances, and go shopping on her own. She now requires assistance from her husband and family. She no longer feels independent. She hopes to continue her recovery but finds progress to be very slow. The doctors say she needs to stay positive, and whilst a full recovery is unlikely, her walking is likely to improve over time.

In terms of support Nahied had a carer and physiotherapy in the weeks following discharge from rehab. She feels supported by the ICU staff – she can always call them, and she has an appointment to visit the ward in September – and her family, who were very important to her.

Nahied felt less lonely on ICU because a nurse would talk to her. She missed this on the general ward.

And was there any difference in this, in the Intensive Care, and in the general ward?

Yeah, I get few differences, ‘cause in ICU, the nurse was always there sitting next to me, 24/7. The first thing I wake up, I see my nurse there, the last thing before going to sleep, the nurse is there. But that is not in the ward, that was different.

In the ward, you had to call the nurse.

I had to call them, and I felt a bit lonely in the ward. ‘Cause the nurse was always talking to me, and I was listening. And she was talking about her day, and tomorrow’s her day off, and talking to me about her plans about her family. One nurse’s son was getting married, she was talking about that, I remember now. But I don’t get that in the general ward, I missed that.

You felt a bit lonely you say?

Yeah. It was a side room, but lonely, ‘cause no one was always there. When I called the buzzer, a nurse would come straightaway.

And did you have any contact with other patients in your time in hospital?

No.  No other patients, no. Because of Covid, you weren’t allowed. Yeah.  ‘Cause of Covid I wasn’t allowed, and there was one nurse, she made me porridge. I never ever ate porridge. She goes to me, I’m going to put something here, and you’re going to eat it. So, she made it for me, she put some honey and I ate it. It was nice.

Doctors told Rani that her sister was unlikely to wake up from coma and asked her to come to the ICU.

So, the doctors, they called me, and they said that Nahied’s not responding to any medication at all, we are sending her to the ICU ward for her to get better, and then see what we can do in the ICU ward. If she needs any machines, it will be easy access for them to give it to her. So, she went to the ICU ward, and then her lungs were not working properly, so the doctors decided to put her into an induced coma. And then she was on a ventilator.

At one point, I had a phone call from the doctor, telling me to come in, emergency. It’s not looking good, she was telling me, it’s not looking good. So, I just started crying, just over the phone, and I got my husband, my son, we went to see the doctor, and then she took us to one side in the waiting room, and she said that there’s nothing we can do anymore. We’ve done what we can do, and Nahied’s not responding to the medication, and if she has a cardiac arrest, that means that she’s no more. We will put her to sleep, we will take all the tubes out and everything then.

And I mean, that was really hard for me to take in.  I came home, I told the family that was what the doctors had decided, that if she does have a cardiac arrest, then they want to just put her to sleep, there’s no more better they can do. Because her body was closing down at that time. So, at that time, 100 per cent, we thought we’d just lost her. We’d lost her so…I was planning to, even making her funeral plans, talking to the rest of the family, her children, if you want to go and see her you can, because she doesn’t have long left. So, I was like talking to the family, everyone, making her funeral plans. But the next morning, the doctor called me, and she said that she’s responding. And I was so relieved. Even then, I started crying. And then I told the family. The family didn’t understand, they were like questioning me, how come the doctors were saying this yesterday and now they’re saying this? And I said, well the doctors are giving me the true information as much as they can. It depends on the patient. Yesterday she wasn’t responding, today she is responding. So, that’s like a miracle for us.

And yeah, so I went to see her, the doctor told me to come and see her, we are going to wake her up, so I was there when she woke up from the coma. My son was there. Yeah, so, it’s been very hard. We think that she’s got a second life, she’s come back, she’s got a second life. And the family has come closer, because we’ve seen the death really closely. The family’s come close. Yeah. It’s been really hard for her as well, since she’s come back home. We’ve been there for her as much as we can, the rest of the family has.

Yeah, and what was your life like at that time, when things were so uncertain?

I was very emotional. I was like, crying, explaining to every individual person it was hard for me to repeat myself to everyone. And if you just miss someone, and then they just come back to you, they don’t understand, a lot of things were happening with me, and they just say, oh, how come you don’t tell us? Yeah, they won’t understand. So, I had that pressure as well. But my family’s been supportive with me, back then. But it was very emotional, very emotional, yeah. But I think the family’s bond has grown more closer than we were before. It has, yeah.

For Rani, dealing with the many calls around her sister’s admission to ICU was overwhelming as she was also looking after her husband and children.

Yeah, when I found out that Nahied was admitted at the hospital, at the beginning it was just like an asthma attack.  But then, after a few days had passed, she was tested COVID positive, which we didn’t know that she had COVID.

And then, I was her next of kin, so the doctors and the nurses were like contacting me to discuss the plan, what we need to do next.  So, I was like in the middle of everything.  I speak to the doctors, speak to the nurses, and then speak to the rest of the family, to put the input of the family as well.  And then I used to have constantly people calling me, what’s happening, what’s going on?  It was a little bit too much for me, because I’ve got my husband and my own children to look after as well.

But, on top of that, at that time, Nahied, was the top priority for me at that time.  So, the doctors, they called me, and they said that Nahied’s not responding to any medication at all, we are sending her to the ICU ward for her to get better, and then see what we can do in the ICU ward, if she needs any machines, it will be easy access for them to give it to her.  So, she went to the ICU ward, and then her lungs were not working properly, so the doctors decided to put her into an induced coma.  And then she was on a ventilator. 

Rani’s children helped her through the time when the doctor had told her Nahied may not survive.

And what would you say was the most difficult?

Losing her, that time when the doctor called me. It was like eight o’clock in the morning, and he told me to come as soon as possible. It’s not looking good. That’s what he said over the phone. That’s the moment I knew what he was going to say. And before even reaching the hospital, I was just crying, at home, and yeah, my son came with me, and he was telling me not to cry, not to cry, but even he started crying, when he reached the hospital and spoke to the…I stopped crying, I put a brave face on, but my son started crying. So, that was the most scary time for me, when the doctor said that, there’s nothing else we can do, and we might have to switch the machines off.

The occupational therapy team had adjustments installed in Nahied’s home. A physiotherapist and nurse came twice a week initially, and later once a fortnight.

Do you want to say a bit more from when you came home from the hospital?

When I came home from hospital, I had a plan from the hospital, a carer’s plan. They used to come, first before me getting discharged, I had an item fixed, like a bedrail, like this I’ve got here, and a toilet frame, shower seat, another rail for me to get up the stairs. So, the hospital helped me quite a lot.

And then I had a care plan for six weeks, which was for nurses coming home four times a day. Getting up me, coming in the morning for my breakfast, getting me up, giving me a shower, giving me my medication and my breakfast. Then lunchtime, she used to come and then in late afternoon, then in the evenings. Giving me a shower in the evening as well, dressing me up.

So, I did rely on them coming home. But then slowly, I also had physio coming twice a week, then as time went by then that reduced to three nurses a day, then two nurses a day. But now I have one nurse coming every two weeks, which is good.