We talk to Helen and Greg about how they manage Helen’s condition, and why love gets them through
Helen, 37, was diagnosed in January 2019 after experiencing symptoms of multiple sclerosis (MS) for around five years. Her husband Greg now cares for her. So how has this changed the dynamics of their relationship? “I think the diagnosis has made me appreciate Greg as a husband more,” she says.
“I read so many sad stories about partners not being supportive, so I count myself very lucky. Greg is a lot more hands-on with our son now, so it feels like a partnership more than me being mum and him being the breadwinner. Sometimes we have been forced into situations where he has had to become a carer in the fact that he has had to clean me up, get me into showers, and basically do things that I never imagined I wouldn’t be able to do at 37 years old.”
For Greg, Helen’s diagnosis has helped them work more as a couple than as individuals, but it isn’t easy. “It's hard watching someone you love go through this. I feel like I want to be home a lot more now and with a mixture of lockdown – I'm a chef, so I've been on furlough – and watching the progression over the year, I have changed my job to ensure that I am home more for Helen and my son,” he says.
Helen was unfortunate to experience a big relapse a year and a half ago. “For me, the loss of the use of my legs, bladder, bowel has been the biggest challenge physically. It's taken 18 months of physio and training to be able to do things again, and lots of different drug trials to find what works with my body. This has affected me greatly emotionally, and I have counselling to work through these emotions and address my worries about the future. These things can overspill into your mood and sometimes, I just have to step away from the situation and take time to myself to calm down and start to think clearly.
So what had Greg found to be his biggest challenge with Helen’s MS? “The biggest challenge for me has been realising that this won't go away,” he says. “The uncertainty of it all, even when it's stable – how long will it stay stable for? Is the drug is working? There are no definite answers and that takes its toll emotionally on both of us. We do everything we can to stay fit and healthy, and trying to stay one step ahead of the MS. When we had our bathroom and house redone, some of the considerations we put into place were keeping it accessible in case Helen ends up in a wheelchair. Having that as a real possibility was a little scary but is has also given us some control over the situation.”
The couple feel that to have honest communication is the best advice they can pass on to anyone in a similar situation to them. “Just be honest and open – some issues, like sexual things, just have to be openly shared and discussed. It can be really embarrassing. I have bladder and bowel issues but Greg just gets on with it and helps me when I need it,” says Helen.
“Just be patient and be there,” says Greg. “It's hard for me but is nothing compared to what Helen goes through every day.”
“It's a hard few years making the adjustments and it's a huge learning curve,” says Helen. “For me, the diagnosis was a blessing in some ways as it finally confirmed that there was something wrong and it wasn’t all in my head. It definitely takes a couple of years to find yourself find your groove and what works for you in terms of medication and pacing your life so that MS fits in with you and not the other way round.”
“It's going to be hard but it will be okay,” says Greg. “At the end of the day, you’re with someone that you love and you made those vows and you will stick by them because that's what's right.”
MSer and Feature Writer Ian Cook reveals his first-hand experience of becoming a carer
It may sound strange to say this but I believe being disabled is, in many ways, the perfect qualification to care for another disabled person. From 2013-17 I was involved in the care of my aunt (pictured below) and my mother (pictured right) at the end of their lives. Being a disabled person meant I knew all about aids, adaptations, and the benefits system. It made me empathic for someone who, like me, has physical difficulties, and I hope it made me sympathetic without being patronising.
I believe progressive MS gave me great understanding of how to help a 93 year old woman cope with Alzheimer’s and a 92 year old woman cope with bowel cancer. The reason I say this is that both these conditions involve immobility, incontinence and a range of problems which often bear an uncanny similarity to MS. That’s not to say progressive MS gave me all the qualifications. No, MS frequently robbed me of the physical strength to do everything required, but it gave me bags of empathy for two family members with similar problems to mine.
In the beginning
Things started to go wrong for my aunt around 2013. As a child my spinster aunt had always sent me birthday cards and this continued until 2012. Then in 2013 no card arrived. I waited a week then phoned. During a brief phone call it became clear she was having memory problems. A few months later as her next of kin I received a call from her GP which made me question whether my aunt’s problems were more serious. I decided something needed to be done.
I called the church my aunt attended and I spoke to the vicar. Yes, they had been worried about my aunt for some time. Within days I was at my aunt’s home in Sheffield, some 90 miles from where I live. On arrival it was clear my aunt, who had just been diagnosed with Alzheimer’s, needed help urgently and being her nearest living relative it was up to me to help her set up a Power of Attorney (POA) to manage her finances. I also fixed up a social services assessment. Within weeks a carer was visiting four times a day and the POA allowed me to pay her bills through her bank account. I also arranged weekly supermarket deliveries of food.
Lending a hand
As I became more involved in my aunt’s care it struck me Alzheimer’s was like progressive MS in the sense that you are always playing catch up with an illness that is constantly racing ahead of you. In progressive MS the big idea is the brain’s “reserve capacity” i.e. how much unaffected brain there is to compensate for the ravages of the illness. I think Alzheimer’s, which is also a disease involving the brain’s white matter, is similar and the fact it strikes people in their later life means the brain has shrunk to the point where there is little reserve capacity left to draw on.
Later in 2013 I found my aunt had been admitted to Sheffield’s Northern General Hospital in a confused state. The hospital said she was unable to be discharged home so I arranged for her to become a resident in a care home which was only 400 yards from her own house in Sheffield.
Juggling the load
While all this was going on, my widowed mother, also in her early 90s, and living in Paignton, was diagnosed with bowel cancer. I have two sisters, the elder of whom lives in the South West, and we had an informal arrangement that as I live in Birmingham I would take the lead in organising care for my aunt in Sheffield while my sister in the South West would take the lead in organising care for my mother in Paignton.
So, in 2014 my elder sister and I took out Powers of Attorney for our mother, a care home was organised and for two years I was travelling down to Paignton to see my mother in her care home and then up to Sheffield to see my aunt in hers. To say this was difficult for someone with progressive MS would be an understatement. There were several crises, but we somehow muddled through, ensuring that my aunt and mother were looked after for what I assumed would be a short period, and indeed my mother died in June 2016 and my aunt in September 2017.
What I know now
It may sound a strange thing to say, but looking back I think having MS has been good training because as a MSer my experience of dealing with the country’s labyrinthine care and health systems means I was able to ensure my aunt and mother had a good end to their lives. I never thought that having MS could bring with it any benefits but the past five years have made me reconsider this. I have learned a few dos and don’ts, I have made a will, set up a POA for myself, and bought a funeral plan. Without sounding morbid I have started to think about my own end of life care on the basis that one cannot live a good life without preparing for a good end of life and ultimately a good death.
Adam and Sharon explain the challenges and rewards they've experienced since Sharon became his carer
Adam, 43, was diagnosed eight years ago with relapsing remitting MS, and in the last 18 months it has become secondary progressive MS. He lives with his wife, Sharon, 45, who is now his carer. So, how has his condition changed things for the couple? “Being diagnosed has most definitely made mine and Sharon’s relationship stronger and closer,” he says. “Over the years we have learned to appreciate each other’s strengths and weaknesses, and how to put them into play.”
“We still do pretty much everything together, albeit we just plan for things better. It really is all about management and communication. My wife is an angel of a woman and I’m lucky to have her walking this journey with me.”
Adam says that matching each other’s pace of life probably has been their biggest challenge. “In the early years, as I slowed down, Sharon sped up to somewhat compensate for both of us. This didn’t work and would throw us off kilter. We’ve found our groove now though.” Sharon agrees, “Definitely the pace has been my personal challenge. I’ve always been someone who went 100 miles an hour at everything and so, in the beginning, I found this frustrating. Over time, however, you start to learn the rhythm of the condition, and gain balance.
“I don’t look or think of my husband as any different since his diagnosis, so it’s hard to pinpoint exactly how the dynamic has changed. Physically, yes, he can’t do some of the things that he may be used to but there’s so many other things that he can do and that we have found that we can do together so that sort of eliminates that, if that makes sense.”
So what would the couple say to themselves at the beginning of their journey, if they had the chance to go back and impart some wisdom about what they know now? “If I could go back to the beginning, I would tell myself don’t be scared, it’s going be OK,” says Adam. “You are stronger than you know. There will be many moments when you want to get off this ride but, just remember, that’s exact what they are, moments. It’s such an old cliché, but, tomorrow really is a new day.
“For any new couple beginning this journey, communication is everything,” says Sharon. “Talk lots, but listen equally. Be there for each other but also give yourself what you need. Don’t think too far ahead, no-one knows what’s round the corner, so what’s the point in worrying? And last but not least, laugh. Some days you just have to find the funny.”
Both agree that Adam’s condition has strengthened their relationship, and they have grown together because of the challenges they’ve faced. “The diagnosis from day one just put life and our relationship in perspective,” Sharon says. “The little things just disappeared and suddenly the true value of what’s important took priority. I see this as a gift if I’m completely honest. We forget all too often to stop and appreciate simple things because life gets so busy.
“We both agree that MS was the best and worst gift, all at the same time. For every negative, it can unlock a new positive,” she says. “If I could go back, I would tell myself, don’t try and fix everything, and don’t get ahead of yourself, things will find their own way.”
To kick off Carers Week 2021, we hear from Kerry, 43, who was already living with MS when she met Brian, 52. He is now her full-time carer
I was diagnosed with multiple sclerosis (MS) quite quickly in 2006. I'd had an episode of optic neuritis in 2004 (just in time for my brother's wedding!), then my entire right side went numb on the August bank holiday, which I thought was a trapped nerve. My GP telling me it was 'likely MS' floored me!
My long-term relationship ended in 2009, but not because of my condition. I then met and married another man, had a beautiful daughter in 2013, and my MS behaved for another three years.
In 2017, I was hospitalised for more than three weeks, culminating in an operation and leading to me needing a wheelchair on my discharge. My marriage had been stressed, but it deteriorated rapidly after this – we separated and have subsequently divorced.
And then, in 2018, I met Brian on a well-known online dating site. Our first date lasted eight hours, our second 14, and we're pretty much inseparable.
Lockdown was a bonus for us, as it enabled us to plan our future. We had decided very early in our relationship that this had to enable us to spend as much time together as possible!
We moved to Scotland from South Devon in October 2020, and Brian has officially been my full-time carer since then. For me, the key thing in making this successful has been full disclosure, right from day one, and communication.
I won't let MS define me, or restrict me in what I want and need from a relationship. Yes, of course it has an impact, it affects me physically and I can't pretend otherwise. But I've found that with the right person – and Brian is definitely my right person – it isn't an issue.
Brian loves me, so for him, being my carer is just a natural extension of that – he gets to handle my body and be far more intimate than maybe he would otherwise, but hey, I'd do it for him, so what's the issue?
I think I'd tell the 2006 me that for the right person, MS won't be an issue. And not to compromise – life really is too short.
If you care for someone and you don’t know where to start, here’s what you need to know
Caring can be both physically and emotionally hard work, so if you’re a carer it is important to find out the different ways you can get help and support for yourself.
One way to get help and support is through an assessment by your local authority social services. Both you and the person you care for can get an assessment, which may result in help and support for both of you.
No matter what your level of need, the amount of care you provide or your financial means you can request an assessment. Your carer’s assessment should cover:
Once you’ve been assessed your local authorities will make a decision on whether you’re eligible for support. This support can be provided to you or the person you’re caring for.
If you are a carer who appears to have a need for support you should be offered a carer’s assessment of the person you are looking after, which will also be conducted by your local authority.
The support you receive may be provided by your local authority, or in some cases may be a financial award paid via a direct payment. This could then pay for a gym membership, help with housework and gardening, driving lessons or taxi fares to name a few.
Whether your local authority will pay for any support will depend on your financial situation. This is because some, but not all local authority do charge for carer support. It will also depend on the financial situation of the person you are looking after and if services are provided to them.
If you find you are not eligible for support, your local authority still has an obligation to provide you with information and advice on local services that may be helpful and could prevent your needs from developing further.
If you are in the position to, you could hire additional help and support for the person you are looking after. You could employ an individual or use a care provider, such as a care agency. Your local authority may have a list of trusted or approved providers. Alternatively, you can use the Care Quality Commission website (www.cqc.org.uk).
Another resource, which can be helpful is the Which? Elderly Care directory (www.which.co.uk/elderly-care/care-services-directory).
Also, you could find out if you have a local carers organisation, and if so what support they offer to carers in your area by visiting www.carersuk.org/localsupport.
Carers Week runs from 10-16 June 2019. For more information, visit www.carersweek.org or call the MS-UK Helpline (free) on 0800 783 0518.
As part of Carers Week Mark gives his account of caring for his wife, Portia with multiple sclerosis...
Portia and I met at university, where we were studying architecture and landscape architecture. We were married in 1998 – around the same time Portia was diagnosed with MS.
You can’t anticipate what a progressive condition such as MS will be like. It’s different for everyone. We have had long periods of managing fairly well – including having our three children who are now aged 15, 12 and 10 years old.
There have also been periods of relapse. Day to day you don’t really notice the changes, but you look back over the years and can see how the condition has developed. 2014 was a particularly bad year, Portia spent a lot of time in hospital and we had the shock of finding out she had also developed epilepsy. It was a steep learning curve.
I’m an architect, and while my workplace has been very good at supporting me there have been difficult, uncertain times – especially when I’ve had to have unplanned time off while Portia has been in hospital. You know you’re not the first person to go through this, but it can feel that way.
Last year I set up a Carers’ Network at work which now has 150 members – including people who are caring now or have in the past, as well as people preparing for what could happen in the future. The best thing has been the opportunity to share our experiences and pool our knowledge. There’s always someone you can ask ‘How did you find this?’, ‘What can I do in this situation?’.
Portia and I are a great team, and we’ve always found a way round any challenge we’ve been faced with. Portia loves learning and is currently part way through an Open University course in Psychology and is training as an Art Therapist. MS may make the practicalities more difficult, but it doesn’t stop you living your life.
Celebrate Carers Week
This week is Carers Week. The annual awareness campaign celebrates and recognise the vital contribution made by the UK’s 6.5 million unpaid carers. The aim is to build carer friendly communities, places where carers are supported to look after their loved ones well, while being recognised as individuals with needs of their own.
Carers Week is a time of intensive local activity with thousands of events planned for carers across the UK. If you’re looking after someone, make sure you find out about the help and support available at www.carersuk.org.
For more information on providing care and getting the right support, read our 2-page feature in issue 103 of New Pathways magazine.
In this guest blog Kristy-Jane Martin gives details of a new study looking into the effects of caring for someone with MS.
Research and clinical experience has shown that some carers of people with MS experience low mood and stress. Together, this is referred to as ‘carer strain’. Currently, there is no specific support available for carers in clinical practice. For any specific support to be made available through NHS services, research must show that the support that is provided is beneficial for carers of people with MS, and it should not cost too much. Carer strain and support has also been a topic identified by the MS Society as an important subject to focus on.
Acceptance and Commitment Therapy (ACT) is a talking therapy that has been found to be useful for people in distress. ACT teaches people to respond more effectively to difficult thoughts and feelings, so that they no longer are a barrier to living a full and enjoyable life. In the context of carer strain, ACT offers a range of strategies – including mindfulness techniques – that could help carers to better cope with their caring responsibilities and associated emotional demands. Our team has tested associated self-help versions of ACT on people with MS but not with carers of those with MS.
The study we are proposing will randomly allocate carers who are distressed to one of three groups: one group of carers will receive an ACT self-help book, one group will receive the ACT self-help book alongside telephone support from a trainee clinical psychologist, and a third group will continue with their usual treatment. The aim will be to compare the three groups 3 and 6 months after joining the study to see if there has been any reduction in carer strain.
The outcomes we feel might be of interest to carers are: carer strain, mood, and quality of life. We will also be looking at the cost-effectiveness of the ACT self-help to assess its applicability to the NHS.
The project will be carried out by Kristy-Jane Martin (Trainee Clinical Psychologist) as part of their doctoral training in Clinical Psychology. The project will be supervised by Prof. Roshan das Nair (Clinical Psychologist), Dr Nima Moghaddam (Clinical Psychologist and ACT specialist), and Dr Nikos Evangelou (MS Neurologist).
For more information please contact Kristy-Jane Martin at firstname.lastname@example.org