Mike

Brief Outline:

Veronica was admitted to intensive care with Covid 19 in January 2021. The month that Veronica relied on a ventilator for survival was the hardest month of Mike’s life. Over a year after his wife’s discharge, he still feels restricted by the threat of Covid. Interviewed for the study in December 2021.

Background:

Mike and Veronica have been married for 18 years. Both have three daughters from previous marriages. Together they have 19 grandchildren. Due to Covid, Mike and Veronica retired early from their work in horticulture and the care sector respectively. Ethnicity: White British.

More about me...

Early pandemic

At the start of the pandemic, Veronica worked in a care home. She was very careful not to contract Covid, as she tried to protect Mike from it. Both believed that Mike would be vulnerable as he often had a cough.

The pandemic devastated Mike’s business, in horticulture and education. The public health restrictions meant that Mike could not visit his father and brother, both of whom lived in care homes, with Alzheimer’s and Frontal Lobe dementia respectively. Both of them died during the pandemic. With everything else going on Mike found little time to grieve them: instead, to try to ensure the continuation of the jobs in the tree nursery he had helped build, the staff had been furloughed, but he and two colleagues continue to work. Mike had hoped that there would still be a job for him at the end of it, but his company collapsed due to the pandemic.

Onset of symptoms

Mike and Veronica spent Christmas together in 2020. It was then that Veronica began to feel poorly. She took to bed. She tried to go to work the following day but came home early. She tested positive for Covid. Mike and Veronica believe she contracted Covid from a care home resident who was discharged from hospital into the care home, testing negative upon departure, but positive just after arrival in the care home.

Veronica’s symptoms steadily got worse: she had a cold at first, felt flu-like, and had a headache, later she experienced shortness of breath. Mike cared for her whilst she was ill. It was two days later that Mike also developed symptoms; he felt fatigued, had a high temperature and a mild cough. Both were poorly for a few days. Because of the infectious nature of Covid and the isolation requirements, it was not possible for their families to support them. When Veronica’s symptoms became more severe, Mike called an ambulance.

Hospital admission

Veronica was taken to hospital, from which she was discharged 18 hours later. After another 12 hours Veronica was again struggling for breath. Mike called an ambulance again. It was in the middle of the night, and they waited three hours for the ambulance to come. Mike remembers these as difficult hours.

Veronica was readmitted to hospital. At the time visiting was not permitted. The couple kept in touch via phone calls, until it became difficult as Veronica became delirious, such that she had to be restrained on the ward.

Admission to the intensive care unit

When Veronica continued to deteriorate, she was admitted to ICU and she was induced in a coma. The doctors felt this may help her get the rest she needed to recover. At this point already her lungs were scarred from the pneumonia.

Communication with ICU

Veronica spent a month in coma. Mike says these were the most mentally challenging month of his life. Mike received a daily phone call from the ICU doctors. Mike spent a month waiting for that daily phone call. He describes this waiting as “torture”. Mike spoke to many different doctors, who called whenever they could make time. For Mike this meant that he never knew when the call would come. He says, “Your mind plays tricks on you”: he tried to distil meaning from the time of day the doctors called. It would have helped him to have a set time at which doctors called, although he recognises that this would have possibly meant that he would have been anxious about calls at any other time than the agreed time. Mike never called the hospital, feeling he “had no right”, and that all time spent on the phone meant that doctors and nurses spent time away from the patients who needed them. Staff were honest with Mike, which he appreciated. He did not want any false hope.

Dealing with Covid symptoms whilst caring at a distance

Initially, Mike felt physically weak due to his own Covid infection. It was difficult to get down the stairs. Mike did not allow his daughters to come into the house to help him, as he was afraid of passing the infection onto them. He kept in touch with them via text. He felt so distraught and needed to stay strong to them that possibly he did not want them to be too close either. It took him about two months to recover from his own Covid infection. So, he did not see anybody for a month. When he felt slightly better, he did chores around the house. Mike feels his recovery will have been delayed by the mental and emotional pressure of the uncertainty that accompanied Veronica’s admission.

Passing information on to others

Because Mike was the contact person for the hospital, he needed to pass the information he received onto others, which he found hard to do. He texted the information he received from the hospital on to their daughters. The only thing that was reassuring was that a friend of his daughter worked in ICU. She could see and speak to Veronica. Mike sent voice messages that could be played to Veronica and photos that could be hung up by her bed for when she would wake up from the induced coma.

Waking Veronica up from Ventilation

At the end of the 28th day, the doctors decided to bring Veronica out of her coma, as they were afraid of other problems emerging if they waited longer. They asked Mike to consent to a tracheostomy, which he found a scary thing to do, but he did consent. The doctors woke Veronica up over a long period. Around this time, Mike let one of his daughters into his bubble. They went on short walks together, as long as his breathing and energy would allow for it, which Mike found helpful.

Veronica began to recover. Doctors were amazed at her recovery. At this point Mike could videocall her, even though Veronica could not yet speak due to the tracheostomy. It was the first time he saw her in two months. Veronica stayed in ICU for another three weeks during which she was supported by the physiotherapy team.

The ward

When Veronica went to the ward, Mike and Veronica were in touch via text. She still had the tracheostomy, which meant she could not speak. She texted Mike to say that she found being on the ward was difficult. Having little to do, she observed the care on the ward, and told Mike that she felt it was frequently not up to standard. Veronica felt neglected and had no way of speaking up.

Discharge/Follow up care, and the lack thereof

Veronica was increasingly desperate to come home. When she did, she was still bedbound and dependent on full-time care. She could just about make it from the bed to the bathroom a distance of about eight metres.

Mike feels that there was no cohesion between the care inside and outside the hospital. In the absence of any form of professional support, he provided all care for Veronica. Whilst the couple had been told that the GP would be in touch, they did not receive a single call. Mike tells me that although he coped reasonably well, providing the care for Veronica took a toll on him. After four weeks, he called the GP who said that they “were aware” of Veronica. They sent a district nurse, who then arranged for an Occupational Therapist (OT) to visit and referred her for physiotherapy. The first time the physiotherapist visited was six weeks after Veronica’s discharge.

Cumulative loss

After 4 months, Veronica needed less and less support from Mike. Whilst it had been his objective to facilitate her in getting her independence back, when she no longer needed his care, and this left a void. When the worry and care for his wife finally eased up, Mike could for the first time feel the loss of his job, loss of (the care for) his father and brother and start to process the anxiety of Veronica’s time in hospital. He fell into a depression that lasted six to eight weeks. After that, he became angry and frustrated – at the fact that this virus would always be threat, and at others for behaving as if nothing had happened. When Veronica’s brother died, Mike and Veronica wore masks at the funeral, which he emphasises was the sensible thing to do, but it made him feel like an alien. Mike notices that when he expresses his anger, others do not always seem to be okay with it. Mike has lost contact with two family members and a colleague over Covid: “It splits the family a little”.

The effects on Mike have been profound: he is angry, scarred. “The anger is there a lot; it is thrust in your face every day”. He is unable to watch specific programmes on TV anymore. “Things have changed for me completely.” In his relationship with Veronica there is now “a barrier there; and that’s Covid. We are both scared.” It is like there is a “padlock” on their social life: “you’re not free to go wherever you’d like to go.” Veronica has frequently asked herself why she should have become so ill and has suffered bouts of survivor guilt.

Support, and the lack thereof

Mike was offered support by ICU staff but turned it down. He feels that he is used to dealing with problems on his own and that this is no different. He feels he has been let down by professional care in the care for his wife and does not want to depend on them.

Mike and Veronica have been to the hospital with other patients to meet the doctors and nurses. One of the ICU nurses has come over for tea. Mike liked seeing that they had developed such a bond with Veronica, but it also worried him, because the staff have lost so many patients to Covid.

What things are like now

Reflecting back, Mike says Covid has meant that he lost everything: he lost his job, his brother and father and the possibility to visit them at the end-of-life. Mike nearly lost his wife. He has lost his sex drive and his mental health has been affected.

Nearly one year on, Veronica continues to be breathless. She is still on statuary sick pay but will not go back to her job in the nursing home – Mike says her condition would not allow it, and neither would he. To him, the risk of reinfection is too big, and neither of them know whether they could go through a hospital admission again.

The fear of Covid has wider implications for both Mike and Veronica: both are afraid of reinfection, and this significantly limits the events they can attend. When Veronica’s brother died a few months after Veronica’s last hospital discharge, they decided to attend the service but not the wake, because there would be too many people. The emergence of the Omicron variant has only enhanced their concerns and worries.

Messages for others

Doctors calling at a set time would have helped Mike, as well as more support from the government when his company collapsed due to the pandemic, and more support once Veronica was discharged. Mike encourages people who find themselves in a situation comparable to his not to lose hope, to stay positive in the face of adversity.

Mike and Veronica went to the ICU to meet doctors and nurses who had taken care of Veronica when she was critically ill.

It’s only natural they developed an emotional bond with her because of the intensive care that she was getting, and they were all willing her through. One of them came to tea and we had a good, lovely morning and had a giggle and a laugh and a smile. We’ve met others since as well, you know. Meetings at the hospital and everything. It’s good to see them. It’s good to thank them. Good to know that they’re all right and they haven’t contracted Covid or anything like... you know, it’s just so wonderful. And that side of it was... that’s good. That’s helped my recovery in many ways, is meeting the nurses just rather than a videocall. You learnt about them and they’re another human being with another story to tell. So, it does worry me slightly though when you see them and you realise what a bond they had developed because they have to do that on a professional basis day-in, day-out and experience the losses as well as the gains. Must be really, really hard to do.

And if anybody deserves counselling, they do. That’s for sure, you know. But it was nice to meet them. It was lovely.

Mike always waited for doctors to call him, because he did not want to be imposing.

Did you ever call the hospital?

No. No, because. I don't like imposing on people you're professional, very busy people and I wouldn't want to do your job for all the tea in China. And I had no right to. If there was ever a day, there was there was one day we didn't get a phone call. I didn't get a phone call and I was worried to desperation about it. So, the daughters kept saying, have you had the phone call? Have you had the phone call yet? And I said no in the end they rang up for me 'cause I couldn't do it. I couldn't do it. It was too hard. I don't like interfering with people you know if you're busy. I was always told if you want something done, ask someone who's busy. That's very, very true. But professional people that are busy like yourselves and your profession. I don't think I have a right. I don't feel I have a right to impose myself upon you. There might be a day when they need you or meal. But if I've just got a question, I find that imposing. Yes.

But I'm like that with everybody. If I want something done, I'll do it myself, but I won't ask anybody.

Mike became depressed when his wife regained her independence, for it was then that he felt the loss of his job and care responsibilities.

And after about, I suppose, four months, she needed less of my support and, you know, I had a goal in my mind to give her, her independence as quickly as possible and, you know, I wanted her to do whatever she wanted to do for herself, but then it left a void for me. Because suddenly after all these months of intense worrying about whether she was going to live or die and then months of intense care of looking after her, and then suddenly she was able to do things for herself. And that left a void in my mind, and I became very depressed, you know. It was like all the air going out of a balloon, I guess, you could say. And of course, I’d given up work, I decided to retire early. You know, it wasn’t the right time, but I decided to because financially we lost so much the previous year, it was very difficult. We lost everything and I couldn’t get any support because I was a limited company. So, there was no furlough or anything. But anyway. But I was very depressed for about six to eight weeks.

I didn’t speak to the doctor or anything, but I found it very difficult within myself now that I suddenly had some time to myself. I was lost. And then I became angry and frustrated with people because I felt that we got through this Covid and, you know, we survived it, but I felt that people around us were becoming lackadaisical with it all again and not focusing on the problem of the ill-; Because in my mind, I knew it would never go away because I knew... Because it’s a virus, it’s always going to mutate. I know that much, you know, and it would always be a threat for years to come until medication can deal with it, you know, like we do the flu now.

And I just get... I was getting angry with my children the grandchildren and they were just sort of... It’s like nothing had happened, you know. I always felt people were behaving as nothing had happened, you know, and I couldn’t cope with it. I couldn’t cope with it because I’d put so much in to, you know, trying to get Veronica back and other people were getting on with their lives and I couldn’t. I couldn’t do it.

You know, it was really, really hard. And I still feel like it today quite a lot. It’s intense inside me. I worry about it every day and I see people out on the streets and in shops and no one’s got a mask on, or no one puts any gel on their hands when they enter a premises or anything and I just feel so angry, you know. I don’t want to feel like that because I’m not an angry person. My strength is for being so placid and calm, you know, but this has changed me completely.

Mike phoned the GP and physio when there was no follow-up support for Veronica for weeks after her hospital discharge.

Are you alright speaking a little bit more about when Veronica came home, and you said the first month there wasn’t any care?

None at all. Doctor, nothing.

So, can you talk about where you went to seek support and what that looks like?

Well, we were told that the doctor would be contacting us from when she returned home from hospital, but somehow, something... They’d keep an eye on her and all the necessary letters were sent from the hospital to the surgery. And it wasn’t until... Important to me was the physio. She needed to keep that sustained. That needed to continue because, you know, she needed professional support for that. I’m not very good at that sort of thing. I could get up and walk anywhere, but she needed the proper exercises. And after about four weeks, I was getting a bit frustrated that no one had turned up. So, we were given these phone numbers to call in the lists that came home. So, after four weeks, I rang the GP surgery and said that, you know, Veronica’s been home, and no one’s come and seen her or checked her medication.

You know, because she was on so much medication when she came home. Do we need to continue with this after a month? We made the call, I made the phone call and then the doctor rang back and said, oh, yes, I’ve got all the notes in front of me, we are aware of her. I thought, well, that’s encouraging. He said, I’ll send a district nurse out or a nurse from the... No, it was a nurse from the surgery, sorry. And a nurse came out, spent an hour with Veronica, discussed everything and we went through everything, but never happened again. Nothing. Nothing at all. And then of course the physio... I rang up the number that I was given for the physio and got no reply for a week. I had to leave a message on an answer phone. Got no reply and I rang back. They said, oh, messages got deleted. I said, well, you know, my wife’s been at home for a month now, she’s receiving no physical support from a physio or anything.

Oh, right. we’ll look into that then. Then the district nurse came out and assessed her. It was at that time she was issued with some equipment to help us around the home from OT. And then you’re on the list to have a visit from physio, and that occurred about another two weeks later. So, we were about six weeks in before we got any real support, really. But then, you know, I’m a determined so and so and I did what I could for her, you know.

How were you feeling about that at the time?

I was frustrated, yes, and angry. Very. I was angry. I was frustrated and angry for her because she was just forgotten about. She was four months out of intensive care and the GP couldn’t even call, couldn’t even make a phone call. And I find that disappointing to put it mildly. Very disappointed. And I felt disappointed that the communication between her leaving the hospital physio department and being put onto whatever you call it on the outside, there’s no cohesion there. You know, it should have automatically been passed on and carried on. Not just, oh, forgotten about. We are aware of you. Well, I don’t know.

The feeling that he needs to protect his wife has changed Mike’s demeanour and their relationship.

I’m trying to protect her. We’ll see. Now we’ve got the dilemma of Christmas now. Last year was a disaster obviously. Well, it was for everybody. Nobody could see anybody. We’re back here again with Omicron threatening. We’ve agreed that some children can come on Boxing Day, but they all must be tested before they come. I don’t know what else you can do, really, but I will still be under threat. I should feel vulnerable, you know, and I don’t like being vulnerable. It’s not me. So, I just feel... I think in many ways I worry that because I’m so protective of her and the way I put things across to people comes a little bit stronger than people are used to. You know, they used to, I’ll accept anything, you know, what is, what is, but now I’m a little bit more forceful and I don’t like it. I don’t like being like it. I think everybody should be free to make their own opinions and do what they want, you know, but I’m having to make rules and I don’t like it.

I don’t know if I’ll ever get over it. I honestly don’t. Anyway, we are where we are today. Whether I... I don’t know. I don’t think I’ll ever get over it because in my mind, there’s the thought that I might have to go through all that again, and I don’t want to, and I don’t think I will allow myself. That’s how I feel.

And would you say it’s affected your relationship to your wife?

Yes. Things are not the same. We still love each other intensely. There’s no denying that, but there’s a big barrier there and it’s Covid. I have to say it is. We’re both scared. We’re both scared. There’s no doubt about it. You know, you can’t... You can say man up and grow a pair or whatever you want to say, but I’m afraid most people who say that haven’t been visited by those feelings yet or that experience. They haven’t had it, you know.

And what does it mean practically when you’re both scared?

Well, you don’t feel free, you know, to express or do things that you would normally do or go places you would... Everything’s got a padlock on it, and you’ve got to unpick it before you go.