Niki
Niki is 66 and prior to her retirement, worked as a Speech and Language Therapist. She recently lost her husband Stuart, with whom she has two adult children. Ethnicity: White British.
Niki cared for her husband Stuart over the 5 years of his illness. Questions remain over what his diagnosis could mean for other relatives. Although Niki finds this a difficult position to be in, she plans to keep an open conversation with their children.
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Niki first became aware of MND in the family in 1995, when her husband Stuart’s mother developed difficulty speaking. Her illness developed rapidly, and she died just six months after diagnosis. In 2015, Stuart began to have trouble walking and using his hands. He was diagnosed with Guillain-Barré syndrome, and later Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), as his symptoms progressed in spite of treatment. Stuart developed pneumonia, at which point the consultant suggested that they now had to consider his illness as a form of MND. The family also started to reconsider whether a maternal aunt of Stuart’s mother, who had been diagnosed with MS, could have been affected.
After his diagnosis, Stuart and Niki went for a second opinion, where the consultant discussed the possible hereditary implications and suggested genetic testing. Niki spoke to their children about what this could mean for them and their own children, a conversation Stuart found too difficult to have. Stuart decided to go ahead with genetic testing, which Niki and their children supported. They received a letter with the results, which were inconclusive. Niki describes this as a difficult position to be in, as it leaves the family “up in the air”. Whilst they were not offered genetic counselling prior to having the test, it was advised in the results letter that this might be useful for other relatives. Neither of their children have looked into this further, but Niki plans to “keep that subject alive” and maintain an openness in discussing it within the family.
Niki cared for Stuart over his illness. She felt confident in accessing the support and services they needed, due to previous personal and professional experience. Though she respected that Stuart was reluctant to accept his diagnosis and talk about what this meant, this made planning for the future difficult. Niki was grateful to have the support of a strong and well-coordinated team, which included the local hospice and specialist nurses. She found they also helped facilitate difficult conversations around issues like mobility, feeding and ventilation. She encourages others to make links with these services before they think they need to, and to find ways to de-stress. For Niki, this meant making sure she maintained her own health, and taking time to do things like walking the dog. Although caring for Stuart had its challenges, particularly in the context of the pandemic, they worked hard to maintain dignity and find enjoyment in every day. Niki maintains this philosophy since losing Stuart, following five years of illness.
Because of her experiences, Niki has put her own end of life wishes into writing, so that her relatives will know what she wants. She continues to keep up to date on the research around MND. Whilst she is hopeful for an effective treatment in the future, she emphasises the importance of working to improve quality of life for people living with the disease. She highlights the substantial barriers that people can face in accessing support and services. Whilst she is grateful for the help she and Stuart were given, she would like to see this offered more consistently. Niki encourages healthcare professionals working with families affected by inherited forms of MND to consider how they pace and time information, and to be aware of using jargon. She encourages other families in a similar situation to communicate openly.
Niki’s husband Stuart was relieved when his genetic testing results were inconclusive, but she finds the uncertainty difficult to deal with.
Niki’s husband Stuart was relieved when his genetic testing results were inconclusive, but she finds the uncertainty difficult to deal with.
I always thought of it in my own head as a motor neurone disease. So at that point, one began to think, yes. And then because Stuart didn’t want to accept the first diagnosis given to him by his original consultant, when he was told, “I think we need to be considering this as a motor neurone disease,” he didn’t want to accept that, so we went for a second opinion. And that was extremely helpful, not in terms of reversing what we’d been told, but in terms of confronting us with the fact that we needed to have genetic testing, or he needed to have genetic testing. So it covered the bases that hadn’t been covered before, so that must have been nearly two years into Stuart’s illness. In my own mind from early on, because of the little bit of knowledge of neurology that I have, it had always been motor neurone, so the genetic possibility had been there. For him, not until he was told that genetic testing would be an important thing to have done.
And then, obviously, that was like the world had fallen in because the implications of that are huge. Even though there’s great hope for the future and even though our ability to diagnose and manage even these very severe forms of neurological disorders will get better and better and our understanding will get better and better, you are still thinking, you know, of all the generations to come. Because obviously, you know, your children, your grandchildren and then beyond them, that is your legacy, you don’t want your legacy to be attached to something like potential inherited motor neurone disease. So that, you know, that takes a massive adjustment and was probably the bitterest blow for Stuart that there had been. And so it was a great, it was a great relief for him to get the inconclusive test results back because he could then construe them as being everything’s okay, because the report actually sort of reads in both ways. I find the inconclusiveness very difficult because, you know, you genuinely just don’t know. And since each family member in my husband’s family appears to have had such a different experience of a motor neurone disease, you know, might that be the same for members of our ongoing immediate family, you know, might they be at risk from lots of different variants, if there is such a thing.
When caring for a family member with MND, “you have to remember your own needs”. Niki encourages other caregivers to find a “vent”.
When caring for a family member with MND, “you have to remember your own needs”. Niki encourages other caregivers to find a “vent”.
Physically, I recognised the need to be fit, you know, because I’m not young and most people who are caring for those with neurological disorders are likely not to be particularly young. So I recognised the need to be physically fit, which in many ways is an anathema to me, except by the things that I like doing. So you have to find a way to remain fit and strong because it demands that you be strong. When somebody no longer eats orally, you have to safeguard yourself from the very real temptation to think, “Sod it, I don’t…” sorry, maybe that’s not one for the tape. But to think, you know, “I have got to remember that I’ve got to eat,” and the temptation very much – I mean, by the time Stuart was settled for the evening, it was often nine, nine-thirty, ten, even when we had carers in. You think, “Oh, I really can’t be bothered,” but you have to remind yourself to be bothered. So you have to keep physically fit, physically strong, you have to remember your own sort of needs. I probably drank too much red wine [laughs]. But hey, you know, why not?
Emotionally, I think I’ve been lucky in being able to be ahead of the game, if that makes any sense at all, because I, I knew what I knew and listened to others for what I didn’t know. It was sort of clear in my mind so you weren’t stressing. You know, you just thought, “Right, well that’s where we are now,” but I recognise that that’s not going to be the case for many people. I had moments of huge frustration when, you know, you just had to go away and scream, but once you’d done that, you then come back and think, “Well, okay, right, crisis over, let’s see where we are.” And being able to go and walk my dog, being able to go and ride my horse or just, you know, be up there and be around that, you know, you can’t stress when you’re mucking out a shitty stable [laughs]. You know?
That’s just… I think what I’m saying is that everybody in this circumstance needs to find a vent. They need to find somewhere they can vent, and anybody looking back on this experience is going to look back on it and say, “I wish I hadn’t done that,” or, “I wish I’d kept my emotions in check.” It was very difficult from time to time when it was just the two of us because, you know, it’s just all on you and that person. And you have to recognise that your person will become very dependent on you, very dependent on you, because you will be their translator, you will be their main carer. Even when we had a package of care in, Stuart always wanted me to be there as well. So you have to find your release valve somewhere and that’s what I would say to other people in the same situation, find it.
Niki was able to get the support they needed over her husband Stuart’s illness. She points out that accessing aids, equipment and financial support can be difficult if you don’t know where to look.
Niki was able to get the support they needed over her husband Stuart’s illness. She points out that accessing aids, equipment and financial support can be difficult if you don’t know where to look.
It had a massive financial impact on everybody. I mean, we were lucky so, you know, anything that we wanted or needed, we could buy. One of the extraordinary things about something like motor neurone disease, rather like dementia, is the support, the financial support, in terms of continuing healthcare, doesn’t kick in until towards the very end. So again because of my experience in seeing my mother through dementia, because of sort of prior knowledge, one knew about Attendance Allowance, one knew about Carer’s Allowance. These horrendous sort of doorstop-sized wedges of paper that you have to fill in weren’t a barrier, but I think it’s awful for many people.
You’re not necessarily told, unless you’ve got good care around you, what you’re entitled to. Some of it you have to find out and then you have to wade through the paperwork, and then we decided early on to get the continuing healthcare assessment done because it would then provide a baseline. I mean, we knew the first time we applied that we wouldn’t get it, but it meant that there was a baseline for the next time, when of course we did get it.
Things like powered wheelchairs and mobility aids. I mean, we were tremendously lucky because of the community care team that was around us, and the OTs were absolutely brilliant. And we also have, within our area, an absolutely fantastic medical supplier. So it ended up being seamless, which was fantastic. The powered wheelchair, you know, you might have to wait for weeks and months for an assessment, and then you are not necessarily going to get the full bells and whistles that might make someone’s life that easier, so we again elected to go our own route for that. Silly things like continence care, localities very often only have one kind of continence product, and if that’s not what suits that individual, you don’t get it. So I used to buy all our continence products because I knew what it was that suited Stuart best. We had the great advice of a continence advisor because, obviously, Stuart had a catheter and, you know, you need to work with people to make sure that, you know, you get what is right.
But it’s about having that depth of team and knowing what questions to ask. I think for many people, it’s horrendous because there is no one-stop shop where you’ve got all that information, you know? How do I get Attendance Allowance? How do I get Carer’s Allowance? Who needs to come to assess for this, that and the other? It’s hard, it’s very hard. We were very fortunate on lots and lots of different levels. I just worry about the people who are not going to be so fortunate, either in terms of their knowledge base, their ability to access stuff, the team around them, their financial circumstances. You know, it’s, it’s awful.
Niki found she was mostly offering advice when part of a WhatsApp support group. Everyone came with different points of view, and for her it didn’t feel supportive.
Niki found she was mostly offering advice when part of a WhatsApp support group. Everyone came with different points of view, and for her it didn’t feel supportive.
It was a WhatsApp group, and but I found myself using that to give information rather than to seek information, if that makes any sense. And as with all support groups, everybody comes at it from a very different point of view, don’t they? And so there were some people in the group who felt that, you know, it was a privilege to be keeping their loved one going and to be given this task to do, and I didn’t feel that way. There were people who were facing great challenges accessing services and one thought, “Oh my goodness, you know, we’ve got so much and they’re struggling to get even the smallest bit.” And so it ended up for me, anyway, being an unsupportive support group. So I remained with it until Stuart died and then, you know, posted that that had been the case and I haven’t joined one since.
Niki offered to get involved in training healthcare professionals from a carer’s perspective. She says, “Sometimes, sharing support is support in itself… by putting something back, you heal a little bit.”
Niki offered to get involved in training healthcare professionals from a carer’s perspective. She says, “Sometimes, sharing support is support in itself… by putting something back, you heal a little bit.”
What I did offer to do, and actually it would end up probably being a support to me in some ways, is when I was working I did a lot of training and I think many of the people that we came across in the hospital, in the specialist unit, in the community team and elsewhere, found us sort of quite unusual. I don’t know why [laughs]. And they have asked, they’ve said, you know, “If we were doing training, would you come back and talk things through with care staff from a relative/carer’s perspective?” And I certainly would. The respiratory consultant at the unit who has particular interest in motor neurone disease and who tended to see all the MND patients through is a very forward-thinking man, and… so those things might be a very real possibility because, I think sometimes, sharing support is support in itself. That’s my experience. And you, you can then sort of put something back, and by putting something back, you heal a little bit, if that makes any sense.
Although it comes with many emotions, Niki feels that caring brings out inner strength. She recommends finding something to smile about each day.
Although it comes with many emotions, Niki feels that caring brings out inner strength. She recommends finding something to smile about each day.
I think the message would be it hurts, it’s horrible, it’s painful, you’re going to be angry, you’re going to be frustrated, you’re going to be lost. But you’re going to have, you’re going to discover your own inner strength, just sort of stick with it and literally every day, find or do something that just makes you smile, you know? Even if it is just silly things really, and try and keep the lines of communication open with your family and your friends, because people are going to be coming at it from such different angles, you’re going to feel torn in lots and lots of different ways. And try not to take on everybody’s angst and emotions because you sure as hell are going to have enough of your own [laughs].
Niki highlights the need to consider the pacing and timing of information, using accessible language, and providing something in written format for people to revisit.
Niki highlights the need to consider the pacing and timing of information, using accessible language, and providing something in written format for people to revisit.
I think pacing, timing, seeing that all family members obviously may come at this from a very different point of view. Being jargon free, I think that’s usually important because I think, you know, people supporting the carers, it’s quite a painful role to inhabit, isn’t it, for them. And sometimes, you know, you can hide behind professional jargon. Revisiting things, so lots of recap… giving something in written form, even if it be a link to a website or a handout or whatever, so that people can revisit it. Asking questions that don’t need to be answered on the spot that you can go away and think about, and then ask those questions again in a slightly different format at a later stage in the disease or in the process.