When it comes to living with MS, the care needs of individuals are always distinct and unique. If the disease is progressing, then those needs will alter, and understanding all the choices available is key. In collaboration with stakeholders, family, and friends, we need to either advise and support their wishes about the care they want or help family members make the right decision on behalf of their loved one if they are unable to do so.
Having determined a client’s wants and needs, it’s not always appropriate to place someone in an environment like a care home. This is often a ‘default’ choice when care becomes more complex, but for most living with MS it is not their preferred outcome. There may be people living there who are older and who have dementia or other unique behavioural issues – and they need a different kind of round-the-clock care.
When we met Sarah in 2017, she had a diagnosis of relapsing-remitting Multiple Sclerosis and was living with a range of issues at the age of 54. She lived in a Victorian terraced house in a quiet street in a town in North Cheshire. She was bright and bubbly and had been an avid cook and baker in her time – and her love of the theatre and reading were two of her passions in life. Her children had left home for college and university, so she was living on her own. She had family members not so far away, but it was still a drive to get to her. Weekdays were often out of bounds for working people who couldn’t be there, and she didn’t want family to be her carers.
Sarah had care workers come into her house in the morning for an hour to ensure she was awake, up, washed and fresh, that she was nice and comfortable and had breakfast, and that the TV went on to keep her company. Five hours later they’d return, make her lunch, and repeat the process of changing, freshening her up and moving her. They would visit again for her evening meal and when it was time for bed.
Can you imagine the effect this kind of routine would have on anyone, even with the best of intentions and care? How do you think anyone would feel, stuck in their own home – somewhere that’s supposed to be a place of solace – seeing the same walls day in day out with nothing to look forward to except a few hours of visits from care workers? Sarah felt incredibly trapped and lonely in her own home and her love of life and the person she was began to disappear.
Her children didn’t know how to help Mum in the way she needed, physically and emotionally. Sarah’s focus was to ensure that they were okay, that they didn’t need to be at home, and that they could live independently and not worry about her. She didn’t want her children to have to take care of her. She was Mum and wanted to stay that way.
But over time, Sarah’s ability, let alone motivation or desire to keep on top of her medication, even with help, became a struggle. Her physical and mental health deteriorated, and it started to become a series of caregiving revolving doors trying to find the right solution for her needs, with little resolution in sight.
Meeting care in the middle
It came to the point when it was suggested Sarah should be in a care home to meet her needs. Sarah was adamant that it wasn’t suitable for her. It felt to her that she would be “going to prison“, exchanging her familiar home for “four different walls“. Although going back and forth between hospital appointments was exhausting for Sarah and any family and friends who stepped in to help where they could, going into a care institution was akin to “removing me from my life“.
No matter how caring the four daily visiting carers were, being alone at home was soul destroying. Relying on friends and family felt demeaning and embarrassing (for both parties) and it just wasn’t working. A new care solution – bespoke to Sarah and her circumstances – was needed. After lots of discussions between stakeholders in the shape of the NHS Continuing Healthcare nurses and social workers, Promedica24 proposed that it was necessary, financially viable, and much better all round for Sarah to be able to stay at home receiving around-the-clock, live-in care.
The NHS and social workers – through discussions with all stakeholders and Sarah herself – determined that this would ensure her rights to choose her place of care. With a more personal care service being delivered, this would reduce overall NHS costs by improving Sarah’s emotional and physical condition, thus reducing the need for hospital visits and unplanned admissions.
By working with the Promedica24 Care Team, her live-in care plan was worked out to fit all her needs, evolving to suit her. Simple adjustments, such as ensuring her medication was taken at the right time; having someone to cook and share a meal with her; sit and talk with her; help her with the Physiotherapist’s exercises – even just being able to change channel on the TV – allowed her to regain control and find the spark to live her life as independently as possible.
That care plan was one of the original ones we developed as part of a package to fit Sarah’s needs and lifestyle. A one-size-fits-all arrangement doesn’t suit anyone, so we needed to work closely with Sarah to give her a bespoke package. We also worked closely with The Neurotherapy Centre which has been part of Sarah’s therapy with her MS, with one-to-one physiotherapy, relaxation, support for her mental health and social interactions in their on-site café. Having carer support to take her to this specialist Centre made a real difference to Sarah’s wellbeing.
The live-in care also made a big difference to Sarah’s children. Knowing that when they came home they could just be son and daughter – not feel they had to help take care of Mum and the practical things she needed a lot of support with – meant that those relationships improved enormously. Sarah felt as if “I’ve become Mum again” and relieved that she wasn’t burdening them with her MS, care and prognosis.
When the future looks different
Sarah’s life changed for the better. Instead of being stuck in front of the TV, she could enjoy a wheelchair taxi to the seafront and a few hours strolling in the fresh air. She could enjoy a theatre show, something she loved doing before her MS diagnosis. Her love of reading was enhanced with a subscription to an audible book app. Her life was having colour poured back into it, becoming much more like the Sarah she used to be before her diagnosis.
Sarah worked closely with her live-in carers. As she got to know them over time, they formed a close friendship and bond, meaning Sarah could completely be herself. They could plan those days out together, talk about food and baking, books and favourite authors and recommend new reads to each other. That bond was important to Sarah as she needed to know she could also have candid discussions with her carers, who knew what she needed, and for them to help family and friends understand more about her condition.
When independence is essential for everyday life
If you’ve been diagnosed with MS, you’re still the same person, with the same skills and experience in life. Nothing will ever change that, but MS can change over time and impact people in different ways. Not everyone needs to make any significant changes to their routine or job, and some others find they might need minimal help. Others like Sarah, however, found that with each relapse they needed to make significant changes to support their day-to-day care and routines.
It was essential for Sarah to be able to live an independent life at home, to be able to still live her life when her MS symptoms were better. The most important things to Sarah were:
– Being as independent as she could be with a quality of life despite her limitations.
– To get out and about with the help of her carers.
– To have family and friends visit or to be able to meet friends for tea and cake if she could.
– To be able to visit a specialist neuro-degenerative diseases centre and get the clinical support needed to maintain physical ability.
– That her daughter and son didn’t worry about taking care of her so they could lead their own independent lives.
Building bonds and rediscovering life with live-in care
Sarah enjoyed nearly three years of a wonderful quality of life, where she was happy and as independent as she could have hoped. Live-in care for someone like Sarah is straightforward and can be given as a fully managed, bespoke package to suit the individual. The challenges Sarah faced were restricted movement when she had a particularly bad flare-up. When this happened, it also affected her energy levels, impacting on what she could do day to day. Extreme fatigue could hit her for days at a time, and it’s in those moments that live-in care was a godsend to her, just to get her through each hour, until it relented.
The care of each client is at the heart of the live-in care that Promedica24 provide. Our Care Team, carers and clients work together and because of this, we maintain positive relationships with specialist centres like The Neurotherapy Centre, based in Chester, the NHS and other healthcare providers to ensure that someone like Sarah will always have the best possible care that’s right for them every step of the way. Helping with the day-to-day is what Sarah loved the most about her care. Live-in care providers also take care of administration and financial matters, liaising with different stakeholders and, most importantly, translating what needs to happen for each individual in a way that’s understood – and carried out in a way that’s as supportive and as stress-free as possible.
Living your life your way
If you are living with MS needing care and support to remain independent at home – or are a family member or friend that is assisting someone with MS – and would like more information on care services that support those with this condition, then please get in touch and we can chat about services that can help you.
We know it can be an extremely tough time when someone learns that they have a life-changing chronic illness or disease, but we’re here to help you navigate the warren of information out there so loved ones find the proper support and care at what is a very challenging time in their life.