Supporting Families: Living with MS – A day in the life of caring for a loved one
We all know someone in our lives who seems undefeatable. A superhero. Strong, brave and generally, infallible.
Many of our veterans will know Nigel, Karen and their daughter Tabitha. Nigel had always been the strong, brave man, for his family, as well as those around him; he was well respected and a source of support for many. After retiring from the Police Force after a full career as a Traffic Motorcyclist & Firearms Officer, Nigel easily found a new career. However, their lives were turned upside down when Nigel was diagnosed with an aggressive form of Multiple Sclerosis (MS) in 2012. Tabitha was just nine when her father was diagnosed.
But when it rains, it pours. Nigel had continued to work through the earlier years of his diagnosis, however, when he was diagnosed with prostate cancer in 2015, Nigel had to step back from work to concentrate on his health and treatment. After a bad year of battling the cancer and fighting through radiotherapy, as well as his mother dying who had lived with them for five years, Nigel was given the all clear.
Karen not only cares full time for Nigel, she’s also a Trustee on the board here at Woody’s Lodge. We asked Karen to give us an insight of what life is like for them at home and what it’s like caring for a loved one full time.
Karen: Life as a Carer
In sickness and in health. You never really anticipate the ‘in sickness’ part of your vows, by now, I thought that Nigel and I would be enjoying weekends away, travelling together, we’d always dreamt of travelling along Route 66 on a motorbike and generally spending time together as a couple, especially as our daughter, Tabitha, is now 17.
Nigel was always the strong man, the brave man, the man that was highly respected in our local community and was always supporting and helping others. Instead, our lives were turned upside down back in 2012, when Nigel was diagnosed with MS. At first, we had no idea how aggressive it could be or that a few years later Nigel would also be battling through prostate cancer and end up retiring for good.
To say that 2015 was challenging, would be an understatement. But Nigel fought through, taking radiotherapy and treatment in his stride and we got through it together. However, it was at the end of 2016 and after he had beat the cancer that we realised how much our lives had shrunk, revolving around hospital appointments. Coping with a disability when you’ve always been strong and fit, isn’t an adjustment that could be made overnight and by January 2017, we’d stopped going out. We had become prisoners in our own home. Bit by bit, I had given up everything that I loved doing and had become Nigel’s full-time carer, imprisoned at home with him.
Social Services couldn’t really help us and the only support that they could provide for Nigel was an expensive one-day-a-week session with elderly and more severely or mentally disabled people than Nigel. However, their recommendation of a brand-new charity, Woody’s Lodge, would change our lives. This charity offered support, space and time for the veterans of the armed forces and emergency services. Woody’s Lodge has provided a lifeline to all three of us, and I don’t know what we’d do without it.
Whilst I initially saw Woody’s as a safe place to leave Nigel whilst I did some shopping, caught up with some friends or spent some time with Tabitha, I found people at Woody’s that just got it. Other families, other carers, people in a similar situation to us, where I didn’t have to explain why I couldn’t ‘just go out for a few hours’ on a whim. As I spent more and more time at Woody’s, I knew that I wanted to get involved, there were so many people with inspiring stories, who had served their country like Nigel. I started off by volunteering, helping out whilst Nigel was talking to his friends and intended to get involved with doing arts and crafts with the veterans. Now, I’m one of the Trustees on the board at Woody’s Lodge!
For Nigel, before lockdown, Woody’s had become the focal point of his week, a place where his position in the emergency services means something and is respected. His disability is catered for without being a weakness or affecting how he’s treated. He’s just a person, hanging out with other like-minded people. Whilst Tabitha, has the reassurance that Woody’s is a place where she knows that she will find other like-minded people and support if I should ever become unwell. Woody’s Lodge has become a lifeline for our family.
Someone always has to be with Nigel, private care is expensive at £24 an hour and subsidised council care is lacking and extremely difficult to access, Nigel had a full career working in the emergency services and it is so frustrating that there’s no substantial or adequate care options to help us as a family. A lifetime serving his country and where’s the thank you? Although I try not to focus on this, it makes me feel guilty when we are managing, and we have so much to be grateful for. I have cameras set up in our home that I can view from my phone, so even if I pop out, I know that Nigel is somehow still with me. We’ve built up an amazing support network behind us, with people like our friend, Johnny, who we connected back up with through Woody’s Lodge, able to sit with Nigel if I need to pop out. But it takes a lot of preparation and organisation if I go out for an afternoon or an evening. Now that Tabitha is older she can stay at home to look after her dad if I need to go to visit my parents, but I try not to ask too much from her, she is my rock but I don’t want caring for her dad to take over her life too. I generally never travel further than an hour away from home, just in case I’m needed back at home quickly. Anyone who has cared for a loved one can tell you, it’s more than a full-time job, it’s 24/7, 365 days a year.
When you’re living in difficult or challenging circumstances, you develop coping mechanisms and sometimes you don’t realise that the way you’re coping, isn’t always the best way. But you’ve had to find your own way of doing things, like sometimes I’ve had to be really tough on Nigel, especially when it comes to overcoming his pride, using a stick or his wheelchair was tough to accept for him.
Tabitha is my go-to person, we totally understand each other. Sometimes I feel so sorry for her and how much she needs to help at home and has sacrificed but I also think it’s what has made her such a grounded and person. I believe when awful things happen in life, it’s for a reason. No matter what happens, a situation that tests and challenges you, also enriches you and makes you better in some way, even if you can’t see it straight away. Life is challenging but it has made her so patient, compassionate and full of empathy.
Walking for Nigel is getting increasingly difficult and at the start of lockdown, he was beginning to need to use a wheelchair just to get around at home. I could see that his mobility was declining but also, without Woody’s, our days just blurred and he was losing his sense of purpose and was feeling useless. I could tell that Nigel’s motivation was at a low. So, when I saw that Woody’s Lodge were organising a fundraising challenge: 100 Miles in May, I thought maybe we could organise our own version.
I measured the patio in our back garden, it’s six metres or twelve metres if you go to the end and back again. I worked out that it would take Nigel 3-4 months to walk a mile, but it was something to work towards and aim for. I decided to film and share his daily walks on Facebook, in the hope that it would give everyone context to how determined and dedicated Nigel was, as well as comfort and inspiration to those in a similar situation.
These daily walks gave all three of us a focal point, as well as a massive boost to Nigel’s morale. Woody’s Lodge has given us so much, Nigel wanted to give them something in return by doing this fundraising challenge. It took Nigel exactly 99 days to complete his mile and after organising a final walk up Pen-Y-Fan mountain to see the sunrise for all the people who wanted to support Nigel’s amazing effort by doing a walk for him, we finally managed to get him over his target of £10k. I honestly couldn’t be prouder of him and everything he has achieved.
One of the worst parts about progressive MS, is the different stages of disability. Looking back his decline has been so rapid, and he was so quickly reliant on a stick, his mobility has deteriorated a lot in eight years, using a stick was the first noticeable stage, then a wheelchair to leave the house. Now, Nigel is starting to need a wheelchair around the house as well. The next stage will be Nigel losing his mobility so much that he cannot get out of bed. The thought of this is so scary, but I know that when we get to that stage, we’ll adapt and accept, just as we have done with every other stage.
Working with Woody’s
I am a Trustee at Woody’s Lodge, so I’ve continued to have regular meetings and I have been keeping in touch with many of the veterans, especially in the weekly Zoom meetings. However, it’s really difficult for Nigel to get involved, he finds the calls hard work and exhausting, so he’s had to miss many of them. So, it was a lovely feeling when all of our friends from Woody’s were there for Nigel’s final walk for his fundraising challenge!
Woody’s is such a worthwhile charity, veterans of the armed forces and emergency services have had their health knocked, both physically and mentally, and they need so much support. Which they deserve when you consider how much they have sacrificed to keep us safe! When Nigel first started going to Woody’s, he was just going for the support and the company, he needed Woody’s and the people there to make him feel proud of the work he did and like he still mattered.
We went back to Woody’s Lodge this week for the first time, it was the first time that Nigel has left the house since before lockdown, other than for a few hospital appointments. We went with Johnny Johnson, a friend and ex-police officer and it was so emotional! There’s something so special about being in a room of like-minded people and finding a place with so much comradery. Woody’s is the one place that Nigel doesn’t feel disabled or like something is wrong with him; it’s a place where he can go and find people with his history and people who we have something in common with.
For anyone who has been in the armed forces or emergency services and are struggling, Woody’s Lodge is the perfect place. It’s full of people who just get Nigel and get our challenges as a family, it might not be able to fix Nigel’s physical health but both of our mental health has benefited because of Woody’s, it makes all the difference to get out and talk to people who just understand.
I really enjoyed the daily motivation of a fitness challenge and a goal to structure my day whilst in lockdown. So, I’ve taken part in some fitness challenges that are really popular on Facebook at the moment, like the 25-day press up challenge! I think we will organise more group/team building excursion like the hike up Pen-Y-Fan wit Woody’s and I will keep including Nigel when I can to keep him motivated and also to inspire others.
It’s challenging being a full time carer for a loved one, our lives aren’t what we expected they’d be and my whole life now revolves entirely around Nigel and his needs, but I am also so grateful for everything that we have: our lovely house with views of the sea, our beautiful daughter, Tabitha, the friends that we’ve made at Woody’s and Nigel’s determination to keep going and keep trying to move, even as his mobility is declining. We have so much, but it could all be so much worse.
How Can Woody’s Help You?
Here at Woody’s Lodge, we know there are many challenges for service families – whether they’re adjusting to life together once active service has ended or there are health challenges that need additional support at home and care. Whether you’re a veteran yourself or the family of an emergency services leaver, we can support you by providing you the space and time to reconnect. As well as providing you with the signposting you need for help with benefits, housing, health referrals or if you need help with form filling.
The Green, Green Grass of Home
We also have launched a new project: The Green, Green Grass of Home, which is predominantly based at Penlan Farm in West Wales, which has been funded by grants that we received from the Armed Forces Covenant. Our Green, Green Grass of Home project is aimed at supporting not only veterans and emergency services leavers, but also their families. Find out more here.
Join us for lunch
As we start to come out of lockdown, many of our events like our veteran drop-in centres and our monthly Partners and Carers Lunches will start to operate like usual. Keep an eye on what’s on at Woody’s and our Facebook page.
Thank You Nigel!
We also just want to say a massive thank you to Nigel and his amazing fundraising efforts, he has blown us all away with his dedication and determination. If you would like to donate to the amazing dedication and determination of Nigel, his Virgin Giving page is still open and you can donate here.
If you’re a friend or family of a veteran or an Emergency Services leaver and are looking for some help and support through veteran’s family services or perhaps the chance to socialise with others who’ve had a similar experience to yourself, Woody’s Lodge is here to help. Contact the team on 01446 781792 (South Wales) or 01492 533954 (North Wales). You can also drop us an email at firstname.lastname@example.org