Sheenagh

Age at interview: 61

Brief Outline:

Sheenagh is 61 and has 3 adult children. She previously ran a boarding kennels, but gave this up to care full-time for her husband Jim. Ethnicity: white Scottish 

After her husband developed MND, Sheenagh became his full-time carer. Although this was challenging, she is grateful for that time together. Sheenagh has found adapting to life following his death difficult, but has pushed herself to try new things.

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Sheenagh first became aware of MND in the family when her husband Jim’s uncle developed the disease. Some years later, Jim’s father was also diagnosed. Although the family were told that the disease was not hereditary and that only men were affected, they had female cousins who had also had MND, so they knew this was not the case. Their daughter Robyn has since done some research into their family history, and has found around 7 or 8 family members who may have been affected.

Over the years that followed, Sheenagh and Jim lived with the awareness that he could develop the disease. Jim first noticed symptoms around 2005, and although he had a sense that he had MND, it took two years of tests and a misdiagnosis of peripheral neuropathy before this was confirmed. On receiving the diagnosis, the couple packed their bags and enjoyed several holidays. Because Jim’s father and uncle had lived with MND for around 18 months, they anticipated that he would also have a short life. However, his disease progressed slowly, which Sheenagh describes as a “gift”. 

Sheenagh encouraged Jim to have a genetic test after he was diagnosed, as she felt this could be important for their children in the future. Jim agreed, but did not want to be told the result. Sheenagh is not aware of any relatives who have had pre-symptomatic genetic testing. She feels that “there is nothing to be gained from this”, and that it could have negative implications financially.

Sheenagh has been open in discussing MND with her children. They are aware that they could develop MND in the future, although she does not remember a time where they were told this information. Although Sheenagh worries about their future, and sometimes watches them for signs of the disease, she tries to “get on with life”. She sees life as unpredictable, and would rather deal with MND onset if it actually happens.

During Jim’s illness, the couple had excellent support from NHS services, MND Scotland, the local council and their local hospice. As Jim’s condition deteriorated, Sheenagh gave up her job to care for him full-time. Although she did not know about the options available for care support when she made this decision, she would have still made the same choice, in part because Jim did not want outside care. She feels that caring for Jim brought them closer, as they appreciated this time together. Although it was “tiring” and “all-consuming”, Sheenagh describes caring for Jim as “a privilege”. Jim continued to enjoy life until the end and died suddenly of pneumonia after living with MND for 14 years.

Although Sheenagh misses Jim “every day”, she is grateful that he didn’t have to go through the final stages of the disease. Adapting to life without Jim is difficult, and just over a year after his death, she struggles with knowing where her life will go. Despite this, Sheenagh’s experiences have led her to prioritise what she enjoys. Since Jim has died, she has pushed herself to do new things, from travelling with her children to climbing a munro or two.

Sheenagh’s family were told that MND could not be inherited, and that it only affected men. She knew that “right away we were getting the wrong information”.

MND came into our lives about 37, 38 years ago, maybe even a little bit more than that. My husband’s uncle was diagnosed and then a number of years later, his brother, that was my husband’s father, he was diagnosed also. Initially, he was told that he didn’t have the disease and obviously that’s what he thought it was, but he was told he didn’t have it so he had a big party to celebrate, and then it turned out that he did have it. So we were told initially that A, it wasn’t inherited, and B, it was only men that got it. But my… those two men, the two brothers, had two female cousins, I think they both lived in Australia, and they both had it. So obviously, we knew that it, it was in the family and it was not only men that got it, so right away we were getting wrong information. On three counts, first of all he didn’t have it, second of all, it was only men that got it, and third of all it wasn’t inherited, so it was all… at that time, they obviously didn’t have an awful lot of knowledge.

Sheenagh’s husband, Jim, didn’t want to find out whether he carried a gene variant linked to MND. He gave permission for his blood to be tested but agreed Sheenagh would not tell him the results.

Well, there’s loads, there’s lots of genes. The only one available at that time was called the SOD1 gene, and we did… they asked if my husband if they could take some blood and test it, and he didn’t want to have it done. I don’t know why, because he already had the disease and we already knew he had the disease, but he, he didn’t really want to know any more than he had to know. I, on the other hand, said, “Well, you’ve got three children and if by doing this test further down the line, it could help them, then I think, I think we need to do it.” So he did have the test done; he did not want to know what they found; I did want to know what they found. And that was the way it was left, he didn’t know, I did know. And that’s between me and him [laughs].

Sheenagh discovered that there are funds available in Scotland not only to care for the person with MND, but also for “the carer’s care”.

Initially, it would have been useful to have been told right at the very onset that I didn’t have to give up my job, I, that there were funds available for carers. It wouldn’t have made any difference, I still would have done it, you know? But for other people who, who maybe don’t have the luxury of giving up their job, they need to know that there are funds – well, certainly in Scotland, I don’t know about England and Wales and Ireland – but in Scotland there are funds available for carers, a huge amount of funds. And the other thing is that in Scotland, MND patients get care in their home free of charge, so the, there is no charge and there’s various ways that the care packages can be used, so you need to find all that out and that information comes from a social worker. That’s where I got the information, we were allocated a social worker, who was fabulous.

But not only did… I discovered not only are there funds for the MND patient and that patient’s care, there’s also funds for the carer’s care, which we didn’t, I only utilised in the last year I got someone to come in two nights a week for an hour and a half while I went to running club, I think it was, or cinema or something like that. And that was my care package. So carers also have a care package.

For Sheenagh, “the hardest part is afterwards”. Having lost her husband of almost 40 years, she has struggled to find a purpose in life and to feel “useful”.

I think the hardest part is afterwards, when there’s just nothing. There’s just no purpose in life, there’s… I mean, I’m a very, very lucky person. I had a relationship that some people will never have. I had almost 40 years of marriage to somebody that loved me, and that I loved. Some people never get that in life, but I wonder if that’s what makes it worse, the fact that you had that and then you don’t have it. Just the feeling of uselessness. I kind of almost wish I had someone else to look after, just to feel useful. So that’s the tough bit, it’s being on your own, dealing with it. Thank goodness for my dogs. Yep, they’ve kept me going.

Sheenagh wasn’t interested in going to support groups for carers when her husband was alive; everyone’s situation is unique and it’s not how she wanted to spend her time.

I wasn’t going to find that useful, my situation was unique, their situation was unique. I wouldn’t have found that useful at all. But also… you’re totally, if you get a minute of free time, you don’t want to go and sit and talk to somebody else about their problems; you want to go and do something that’s going to be uplifting.

So any free time that I did get was walking my dogs, going to the cinema, going to running. It was all about getting some me-time, and the last thing I was going to want to do was sit and talk to other carers, to be honest. I wouldn’t have found that uplifting at all, or helpful, I don’t think. Even when I go to the support groups… believe it or not, support groups are mostly made up of past carers whose partners have gone, so no, I don’t, I don’t find that particularly useful.

Sheenagh encourages other carers to “look on it as a privilege and not a chore, because you’re only going to get one shot at it”.

As far as the caring is concerned, try and look on it as a privilege and not a chore, because you’re only going to get one shot at it. And I definitely think it was a privilege to be able to do that, I was lucky that I was healthy enough to do it, and I was lucky that my relationship was strong enough to get us both through it, and I wouldn’t give it over to full-time carers at all, unless I physically couldn’t do it by myself. Because you just, each bit that you give away to someone else is something that you’re losing, and I know that a lot of people maybe can’t give up work, but there is financial help there, a lot of financial help, you just need to get it. So I would say that if you are in that position and you love the person, then for that little period of time, give up everything else and be with them and look after them. That’s the way I would say.