Impact on work and finances
Having a relative, partner or close friend in an intensive care unit (ICU)is often a sudden and unexpected event. When the patient was first admitted to ICU, as well as having to deal with the shock and distress of the situation, most people also had to make practical arrangements to enable them to be at the hospital all day, including taking time off work. Many had also taken time off work, at least for a while, when the patient was first discharged from hospital and had needed a lot of care and support at home.
Here people talk about the effects on their work and finances when a relative, partner or close friend had been critically ill in ICU.
In order to visit the patient in ICU, sometimes all day, every day, many people said they'd had to take time off work. Some said employers had been 'fantastic', one woman saying she'd been allowed four weeks compassionate leave. One man said his employers had been extremely supportive and he'd been on full pay for four months while his wife was ill. He later accepted a redundancy offer so he could care for her full-time for several years. Many others had been pleased with the support they'd received from employers and colleagues when the crisis had happened. Some people said they'd been self-employed and could take as much time off as they'd needed, though of course this meant not having any income during this time.
- Age at interview:
- Administrator, married with two daughters. Ethnic background/nationality: White British.
Were your colleagues supportive?
Very supportive. Yes. Very supportive. We had actually had a bad year at work. A number of people had had tragedies. My close colleague, her father had died of a heart attack in the June, and then my manager had a car accident that she was lucky to escape from. And as I say my managing director had had a serious accident, so actually 2003 was a very unlucky year for us all and I think, because we had all suffered something, they all knew what support I needed. And because I have been there a long time and I don't take time off sick or whatever, I am quite a loyal employee, there were you know exceptions made, rather than just three days compassionate leave. I was given two weeks off and that really helped. And then I found going into work I didn't dwell on things. You know I got on with my work. I put on a happy face and that for everybody I didn't take it into work with me. So that I think helped a lot as well rather than, like I say, sitting at home or sitting in hospital for 24 hours a day, just thinking about what was going on really, and what could happen.
Many people said that it had been impossible to continue working when the patient was ill in ICU. They felt they'd needed to be at the bedside and, under the stress of the situation, wouldn't have been able to concentrate at work. One woman lived some distance from where her sister lived so took two afternoons a week off work to visit her in hospital. In the meantime, other relatives were visiting her every day.
When the patient started showing signs of improvement or recovering some relatives returned to work part-time, often because they'd needed to take their minds off the critical illness.
Most people had also taken time off work, at least for a while, when the patient first came back home and needed a lot of care and support. Some said that employers had, again, been understanding and supportive, though a few said they'd felt pressured to return to work as time went on. Several said they returned to work part-time at first, and phoned home regularly to check the ill person had been managing without them. One woman said she had a 'phased return' to work after her husband died in ICU, and now also had several financial matters to take care of.
- Age at interview:
- Social services employee, widowed with one child. Ethnic background/nationality: White British.
Over the last few months what have been your main concerns now, more recently?
I don't actually know. Obviously financial concerns, although fortunately he was very well organised as far as his pensions and things go. I don't know, being an early, a young widow, is very different from being an older widow I think because you have got ages and ages and ages to go, haven't you, do you know what I mean [laughs]. A long, long, long time and I really can't envisage there being a time when I would be interested in another relationship. So I have been spending a lot of time finding things that I can build on. So I am going back to college and doing some further training and so, you know'
I would advise people to go to the Inland Revenue, phone them up, phone up the DHSS, phone the Council Tax office, [laughs] and speak to the bank and you will find that everybody that you speak to is very, very helpful indeed. And as far as the financial situation goes you need to really go to the Citizens Advice and find out everything that you are entitled to.
- Age at interview:
- Customer services advisor, married, no children. Ethnic background/nationality: White British.
After a few weeks, I guess it must have been about two and a half months since the accident, I'd been at home a few weeks, I did begin to feel a little pressured about having to go back to work. So I made an arrangement to go back part-time when [my husband] was able to do more for himself. I'd help him get showered and dressed in the morning, have a couple of hours together, then I'd go to work. Seeing to his needs took up a lot of time due to fatigue. He'd rest all afternoon until I came back home.
Three months after the accident, the Personnel Department at [my husband's] work advised that they could no longer continue paying his full salary, as the statutory sick pay period had lapsed. That was a bit of a worry. With [my husband] being the main wage earner, we were concerned about how we would continue to pay the mortgage and money worries generally. But he was able to arrange for some of his holiday to be included in his recovery time for another month. That gave him a bit of extra time without the pressure of having to get back to work straight away. His manager at that time was one of his biking friends and he was instrumental in devising a gentle return to work for him. Just a few hours a week, where he could just go in and check his emails and not really have to do very much else. Then he could come home and rest when he needed to.
Some people talked about the pros and cons of being self-employed. Several said that they'd often worried about the fact that they weren't earning but they had been able to take off as much time as they'd needed. A few said that stopping work while their relative was been ill had huge financial implications and they'd lost money.
Some people returned to their normal work routines because, although the ill person was still weak and recovering, they'd been able to manage alone. Several said they'd found it difficult to concentrate when they first went back to work but soon resumed work as normal. A few said the ICU experience had made them re-evaluate their lives and they now wanted to work less or in less stressful jobs or environments.
Some people said that it was only after the ICU experience that they realised how expensive it had been for them to visit ICU every day.
- Age at interview:
- Sales assistant, married with two adult daughters. Ethnic background/nationality: White British.
I think the whole time that he was in hospital and it cost me '23 a day to go to [place name] between the petrol, to putting money on his television card, between him phoning me, between perhaps taking bits up there and going through the tunnel each way, it cost over '20 a day. And because he wasn't working and he wasn't claiming sick pay for all that time, we went through '3,500 of our saving paying, just paying the bills really. Yeah. And just getting to see him every day at [place name], yeah.
Some people had been retired and said the critical illness hadn't affected their lives in terms of work or finances. Others, who had been working, had to return to work because of financial constraints. One man had to pay for his wife to have private physiotherapy care and eventually took a part-time job because the private care had been so expensive. A few others also said they'd used some of their savings on private treatment. They though it had been 'money well spent' but that it wouldn't have been necessary had there been more support for ICU patients once they were back home again.
A few people said they'd had to give up work because the ill person's health had deteriorated so much after critical illness that they had to care for them full-time.
- Age at interview:
- Retired accounts manager, married with two adult children. Ethnic background/nationality: White British.
The financial aspect I think is the biggest thing of all because we have gone from having two incomes to having none. I have been, or my husband has been awarded Disability Living Allowance, but we are still fighting for Incapacity Benefit. He is not 65 yet so he doesn't get the old age pension. And although I am 60 my state pension is very low because I have always paid married woman's stamp. So that really leaves us with just my private pension that I've claimed early and his private pension that he has claimed early and they are not very big because we have only had them for a short space of time.
So I think until such time as he gets his old age pension or we know if we are going to get this Incapacity Benefit we have to think about what we are doing with money. You know because we still have a mortgage which I am going to hopefully clear with the lump sum I have got from my pension, but until I actually get that lump sum I can't actually clear it to see if it is enough. So yes, it is a worrying aspect, but I have been inclined to deal with all the money rather than worry my husband about it I think probably because I was an accountant anyway, so you know it helps to be able to you know manage.
But long term, once he has finished his hospital appointments, and we know about his leg definitely and how much mobility he will have, obviously because we have such a very large garden, I think we will probably look to downsize and therefore realise some of the equity in the property which will alleviate the money problems. But I mean there was no option. I could not carry on working because I would have had to pay a carer and the amount it would cost it just wasn't worth it. I would rather do it myself. So that is what we are doing.
Many people said they were unsure what benefits the ill person or they, as a carer, were entitled to claim. Some felt they'd been given very little help or support in terms of claiming benefits.
- Age at interview:
- Part-time driver, married with two adult children. Ethnic background/nationality: White British.
Husband' No, no, had no information. Nobody gave us anything. I had to find it out all myself. To get disability living allowance, that was a nightmare for her. It's so degrading the questions they were asking and the forms you have to fill in. It was unbelievable. It's like a thick book you have to fill in.
Did you have anyone you could ask questions about that or could you ask your GP at all or anyone?
Husband' Well the GP had to fill a form in for it because I believe the people sent it to the GP for information from him. But as regards filling in the form, no didn't have any help at all. I suppose we could have rung up the DLA people up and asked them.
Wife' Why we applied for the blue badge.
Husband' When I applied for the disabled badge, the blue badge scheme.
For your wife?
Husband' For the car. They said I couldn't have it because she wasn't getting disability, she wasn't getting disability allowance.
And it's only with disability allowance'?
Husband' Yeah, yeah.
Wife' Because I broke my back, their opition was that they think it's going to heal.
Husband' Yes that's right because they think that she's broken her back they would, they think it's going to heal. And that was a real, that was a struggle. We got, it got quite heated when we were filling the forms in. And I was getting cross with her. When the doctor had to come to visit her and when he was asking the questions I was getting quite angry. And the thing is he didn't know. Because when we sent the form in, we filled it all in and told them about her back and everything and when he came here he didn't know about her broken back.
Two women said that, because their partners had had brain injuries, their memories had been affected and they now took care of all financial matters.