A-Z

Sarah Z

Age at interview: 59
Brief Outline: Since 2004, Sarah has been making a new life following her husband’s unexpected death. Sarah experienced many difficult years of living with her husband’s primary progressive MS as he gradually became more and more incapacitated.
Background: Sarah, age 59, is a school teacher. She is white British, widowed, with one child.

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Sarah’s husband was diagnosed with primary progressive MS after having symptoms of blurred vision, pins and needles and some difficulty walking. He immediately had to stop work and after a period of uncertainty in which it was unclear whether he would be able to return to work, he took retirement on the grounds of ill health, at age 49. Sarah described this as financially disastrous for them, as they were dependent on his income, even though she worked part-time. As a consequence, Sarah went to work full-time, quite willingly as she very much enjoyed her job as a teacher. But she had huge concerns and experienced what she calls a ‘rollercoaster of emotions: outrage, anger, fear’ as she watched her husband, previously active in all sorts of ‘manly’ ways, reduced to staying at home all day and walking with a stick. He occupied himself for a time with being a governor of a local school but as his physical capacities declined he became less willing to go out, or even to have visitors. Sarah found this self-isolation quite difficult as she felt that she was becoming responsible for meeting all of her husband’s needs, a role she felt ill-equipped to meet.

Sarah’s husband became increasingly disabled, moving from occasional to frequent use of a wheelchair and increasingly isolating himself at home. Eventually he became unable to go out, and need to have care at home. They turned the main living room of the house into his room and, increasingly, Sarah felt that her privacy was invaded as carers came in three or four times a day. Sarah appreciated the carers’ input, as she was still working, but the relationship between them was not easy. She became desperate for respite care but found that her own needs were not being considered by any of the health and social care workers involved in her husband’s care. Eventually, after making repeated requests, periodic respite care in a local hospital was achieved.

In addition to frequent bladder infections which required hospitalisation, Sarah’s husband developed a problem with his bowels and needed to have an operation. Sarah talks about a lot of miscommunication between the hospital, herself and her husband, who by now was slightly confused, and refers to some misunderstandings about her husband’s willingness to undergo surgery. The problem did seem to be life-threatening and, eventually the miscommunications were resolved and he did have surgery. He appeared to recover well but, during a 6 or 7 week period when he remained in hospital because of difficulties regarding the social services care package; he became unwell again and, unexpectedly, died from complications arising from an obstructed bowel. Sarah understood this to be caused by constipation. She was, and is, completely outraged that her husband could die in this way, while in the care of the NHS. She tried for some time, unsuccessfully, to get an acknowledgement from the hospital that their care of her husband had been inadequate.

Over a period of seven years since her husband’s death Sarah has come to terms with being independent, but she misses him all the time and regrets that they did not have the retirement together that they had hoped for. The one thing she is glad of is that she was young enough, fit enough and able enough to cope with being by herself again.
 

When her husband died, Sarah got a lot of support from her mother and from the school where she worked as a teacher. After six months off work, going back to teaching was her ‘sanity saver.’

When her husband died, Sarah got a lot of support from her mother and from the school where she worked as a teacher. After six months off work, going back to teaching was her ‘sanity saver.’

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I was able to take time off work because the practicalities of coping with the death were pretty straight forward. Most things could be done by friends or relatives that was okay. The emptiness of the house, I couldn’t come in here, this room was completely, no I lived my life not coming into this room. And the practicalities of getting through the days were okay I could do all that and not having him here in some ways not having had him here for seven weeks made it a lot easier because I had evolved some sort of routine although it was with an eye to things will go back to the way they were.

The winter was a long hard winter. I was lucky that my mother was alive, she was close both physically and to me as a person and she was marvellous. School were very understanding, I took the full six months that I was allowed to and after a couple of false decisions that perhaps I could go back to work I waited until I knew I could. Two weeks before the end of the spring term I went back to school and I said I will do the two weeks even if it is the most uncomfortable two weeks of my life I will do it because I knew that once I’d done those two weeks I could then have three weeks holiday, it was a small bite. The kids were fantastic school, going back to school was again my sanity saver.

I picked myself up but that six months I saw as a time to let everything unravel. I’m a great believer that stress is responsible for so much, this is why I think my husband’s MS erupted. His mother died in a dramatic way, as I say from heart disease, we were on holiday with her in Scotland and she had a heart attack in the night and the short version of what happened was that my son, I took my son out for a walk and while we were out the doctor arrived and he and my husband tried to save his mum, had another heart attack and she died. And he felt that he’d let her down, that he could have saved her. And that stress and the previous sort of nine months I am sure is what’s responsible for triggering the failure in the weak part of the system. 

I was quite determined that I was going to see how far I would unravel. I’d spent all these years coping and trying to do what I had to do and I realised that this was an opportunity to actually let everything go, see how far, and it wasn’t down, it wasn’t a depression it was just see what happens if you stop doing everything you’ve done and see where you finish up. And actually I finished up very much where I wanted to be which was picking up the threads of a life which had been over busy, incredibly stressfully busy, some days I used to count up how many hours I’d been awake and I’d get to 17, 18 sometimes 19 hours a day, not enough hours in the day to have a sleep and certainly rest was not something that I knew about. Fortunately I don’t have many illnesses but I thought that was my one chance to actually let my body and my brain pick up again.
 

Sarah felt that social workers were ‘dismissive’ of the issues she was facing in living with somebody who was experiencing difficulties.

Sarah felt that social workers were ‘dismissive’ of the issues she was facing in living with somebody who was experiencing difficulties.

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You talked about carers coming in and referred to some 'run-ins' with Social Services around all that. Could you say a bit about that process?

I had run- ins with social workers because, I have friends who are social workers so I’m not unaware of the vast array of problems that they come up against, but I felt that their attitudes were patronising. I felt that they would send in something like an occupational therapist, we got the bathroom done and then they’d say, ‘Well, you need to improve the access at the front of your house.’ Yes, we probably do. And they’d give us all this stuff that had to be done I’d say, ‘So, what help is there to get all this?’ ‘Oh, you have to do it yourself.’ 

And I found them just dismissive of, really, the issues. Everything on the surface may seem fine, and I know we’re luckier than many, but there was a complete lack of awareness of what it was, from my point of view, what it was like to actually live alongside somebody who was experiencing difficulties. They would regard me as a very difficult woman. I was the problem. I’m quite happy for that. But I felt really important that my husband deserved just as much help and care and attention as anybody else. Just because he was a professional man didn’t mean that he was in some way more able to cope or needed less support. He found it difficult to accept but I would still bang my drum and say, ‘Come on. What are you going to do?’
 

Sarah would have appreciated having a ‘mentor’ to talk to when she was looking after her husband, somebody with similar experience who would understand what she was going through.

Sarah would have appreciated having a ‘mentor’ to talk to when she was looking after her husband, somebody with similar experience who would understand what she was going through.

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Looking back over the whole experience are there key messages that you could offer to health and social care professionals that might help them to improve the services that they provide?

Yes I do I think that the MS support groups that exist are fine they usually meet during the day which if you are a working partner of somebody who has MS not much help there. I think it would be really lovely if, what I would have appreciated would be to have had somebody as my mentor, somebody I could have spoken to who’d had experience of living alongside somebody with MS. 

I think it’s this feeling that it’s, you that are doing it wrong, it’s a bit like parenting there’s got to be a book somewhere that will tell me how to cope with this, there isn’t a book but to have had somebody to whom I could have spoken to in the same way as I have spoken to my friend who has a brother with MS, I think I would have appreciated that because the, the aloneness although you know you’re not, to be able to form a friendship or a relationship with somebody who you can talk to, who would understand what it feels like because we all have the same emotions that can then sort of say well yes actually I can understand what you’re saying and so you’re supported in a sense that’s not only physical and mental but emotionally as well. 

Because otherwise you’re fighting on all fronts and I didn’t do a bad job but I didn’t do well, I didn’t do as well as I could have, had there been somebody there, I mean there must be enough people who have been through this who I’d hold my hand up and say yes if you’ve got somebody who’s going through what I have been through, I would more than happily say there’s my phone number phone me as and when. I don’t want to be a friend and move into a social situation but on the end of a phone. I think it’s support in that sense, maybe meeting a group’s helpful, I wouldn’t know I never got there. On a one to one it might be.
 

Sarah’s husband wanted to find out all he could, but she preferred to take each day as it comes.

Sarah’s husband wanted to find out all he could, but she preferred to take each day as it comes.

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I think there were booklets. As I say, my husband was a medical man. He went, certainly not on the internet at that stage we weren’t that user friendly he brought books from the library, he would talk to medical friends we had completely different approaches to it. At the diagnosis I don’t remember us being told anything particular about what would happen next because it would seem that MS is different to different people. I know of another lady who has MS and she goes and they do scans and they sort of say well this is possible, my husband didn’t want to have anything like that at all at that time he wanted to read and find out everything, my attitude was let’s take each day as it comes, I’m up for whatever comes this way, in my naivety at that stage let’s just take it as it goes. But the actual information given out, no I think perhaps, we had enough to chew on that day just being told. I know my husband was, you know, in close contact with his GP and he seemed happy with what was going on. They talked between themselves I was happy just to trot along on the side lines.
 

Sarah relied on a system of written communication with care workers to keep track of what everybody was doing, but when they were in the house she tried to keep some private space.

Sarah relied on a system of written communication with care workers to keep track of what everybody was doing, but when they were in the house she tried to keep some private space.

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And I felt increasingly very controlling in as much as the carers who were in and out probably now three or four times a day, medication, wash and dress, come back give lunch, come back do tea, come back go to bed. It was this total invasion of any privacy that I might have, the whole of the downstairs of the house was fair game for them, they had total right to go anywhere they wished to go downstairs. We’d had the downstairs cloakroom changed into a wet room they’d be in and out the kitchen. I found that I had got two places to go, either upstairs or in the garden, they were the only two places and if, as they did, the carers called upstairs I would not answer them because I felt that if I was upstairs that was my right to say, you do what you have to do but it doesn’t have to involve me. 

We had a massive documentation system whereby they would write down in a book, I would write down in the book, we kept in contact, I didn’t isolate myself but everything had to be written down so that we all had a record of what everybody else was thinking and doing. We had medical deliveries come in, we had people popping in and out, we had a key, one of those key safes on the door and the key would go missing, the key would be left on the inside and the next lot of carers couldn’t come in. I felt as though it was just total invasion but quite rightly so because I wasn’t giving up work, I couldn’t give up work it was my sanity saver but also the place where I could go and hide and not be here, which is an awful admission but…
 
 

Sarah really wanted to spend some time alone in their home but her husband didn’t want to go away. Eventually, she achieved one week respite every three months.

Sarah really wanted to spend some time alone in their home but her husband didn’t want to go away. Eventually, she achieved one week respite every three months.

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When it got to the stage that not only he wouldn’t go out, he couldn’t go out I became desperate for respite and I think if there is one issue about all of this was that I felt that people’s sympathies, attitudes were all very positive towards my husband, all very caring and helpful; but my needs were not at any stage given any voice at all. When we got to the stage of getting carers in which became a necessity helping my husband as obviously working full time I wasn’t here to help him I would ask GPs, I would ask anyone who would stand still long enough to listen, if there was some way that my husband could spend some time not here. I could go away, I could take my son away but I would actually like some time here with my husband away and that was very, very difficult to achieve. It was achieved quite bad temperedly by my husband who didn’t want to go away. His GP, who was also my GP, was caught between two stools and in fact I moved GPs as a result of it. The stress I felt got heavier and larger. We achieved perhaps one week every three months. I found it really hard.
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