Posted on 30/05/2018

Multiple Sclerosis – a family carer’s journey

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Multiple Sclerosis – a family carer’s journey

Multiple Sclerosis (MS) was part of Diane Wright’s life for almost 20 years, during which time she supported her husband Mick through the disease until he sadly passed away in 2015. Diane gave us a frank and open account about her and Mick’s experience of MS, how it affected their lives and what it was like to be a family carer for such a long period of time.

Diane, from Coalville in Leicestershire, married Michael (Mick) Wright in 1995. Mick worked as an agricultural engineer and Diane as a classroom assistant. They enjoyed a happy family life together with their four children, two each from previous marriages.

The following year, Mick was diagnosed with Multiple Sclerosis - a neurological condition, where the body’s own immune system mistakenly attacks the protective myelin sheath around nerve fibres that make up the central nervous system. This leads to damage occurring to the nerve fibres, which means messages to and from the brain are slower, resulting in varied symptoms such as balance problems and muscle weakness. Some people experience disability and, in severe cases, have an increased risk of developing serious infections.

“Mick was diagnosed in 1996 but he had experienced symptoms many years before, such as double vision and fatigue. The diagnosis was a lot to deal with, for all of us, and we were anxious about what the future would hold.”

Life begins to change

MS is a long-term condition and everyone has a different experience of it, depending on the type of MS they have. Like many people with MS, Mick continued his daily life as normal for many years: working, going on holiday, driving and socialising. Mick’s physical health began to decline significantly around 7 years after diagnosis.

“Mick had ‘relapsing-remitting MS’ for many years, during which time he went through phases where his symptoms would really kick in or new symptoms would emerge. Sometimes he’d be left with lingering symptoms that never went away after these relapses, and these started to have an impact on his daily life.”

As his MS progressed, Mick found it increasingly difficult to manage his symptoms and he needed additional help with day-to-day tasks that most people assume they will always be able to carry out. Over the years, his condition gradually became worse, leading to a complete loss of mobility. He needed a variety of mobility aids and community equipment, including for example, a hoist and special pressure care bed. Eventually, Diane arranged for home adaptations to be carried out to give Mick his own ground floor bedroom and adapted bathroom.

“Mick used a walking stick for many years because he had muscle weakness. He eventually moved to using a wheelchair. We tried to remain positive and constantly changed the goal posts… ‘Ok your legs don’t work but your arms are ok!’ … Mick clung on to any piece of positive news. Leaving work had a massive impact on his psychological wellbeing and he did suffer bouts of depression. He had to rely on myself and the family for a lot more as the disease wore on, including basic personal care, which he found difficult and demoralising.

“During the earlier years, he was still a sociable person and although he used a wheelchair, he enjoyed trips to watch Leicester City play football and visits to tourist attractions but this waned in later years, when he preferred time with the family, especially our grandchildren, our pets and watching the TV.”

The challenges of being a family carer

Diane and the family helped care for Mick for many years at home, with Diane becoming a full time carer and managing his day to day needs as well as everything to do with his illness and their home life, finances, etc. Like so many family carers, Diane admits to finding the role challenging and emotional.

“I always found it difficult being a full time carer - it wasn’t what I’d planned for my life! As Mick’s MS progressed, I took on a caring role and this naturally changed our husband and wife relationship. I think once you become someone’s carer, your relationship is never the same again.

“The hardest thing about becoming a family carer was the loss of my own life and freedom. I was so very angry that this had happened to us as a couple, a family, and to me as an individual. It’s hard to live with that anger and frustration.

“I found that being in control of someone’s basic bodily functions and overall health was a constant stress, and I was always worrying about Mick getting an infection, having low blood pressure, and so on.

“The constant stream of social workers, occupational therapists, MS specialists, carers and so on coming into the home was exhausting, and I struggled to sleep with worry about what would happen next.

“It is very difficult to care for yourself when the pressure of being a family carer is so immense. In hindsight, I didn’t take care of myself, I felt low and tired. I did eventually get help from a number of organisations and agencies including the MS Society, local MS nurses and our Local Authority.”

Diane explained that having a break from caring every so often was essential to her own health and wellbeing:

“Respite services were my lifeline. I was given 6 weeks funding a year from the local authority and the MS Society. This enabled me to take holidays with the family or take a well-earned rest at home. The respite is for the patient though - not the carer, so had Mick declined the offer or not wanted to go away, then we wouldn’t have received the funding. However, Mick did accept the offer of respite and he received some great care at local facilities. In the earlier years he enjoyed these stays as they provided entertainment and a change of routine but as his illness progressed he was not so keen to go.”

After a number of health problems, including an episode of sepsis, Mick passed away at the age of 57 from complications with pneumonia. Amidst her sadness and grief, Diane is now concentrating on enjoying time with her children and grandchildren, and has since started working again outside of the home.

Advice from someone who knows

With her wealth of experience looking after a loved one with MS, Diane is keen to pass on advice to other partners or family carers who may be in a similar situation, and she shared with us some of the things she learned along the way.

“My advice to others would be really do your homework – learn as much as you can about the condition in the first instance. It may be tough to hear some of the symptoms and hear stories like ours, but remember, not everyone experiences it the same way. MS is a complex illness and one size doesn’t fit all. Some people never get to the stage Mick did.

“Find out what is available in terms of help and funding. I would always recommend people go down the ‘personal budget’ funding route, as this gives you far more control. Be persistent and be prepared to fight for what you need. Keep hammering on those doors till the powers-that-be listen!

Take all the help you can from family, friends and outside agencies. Take time for yourself when you can. It’s so easy to burn out and this doesn’t help you or your loved one. I wish I had looked after myself more over the years.

Never feel guilty for your own emotions. It’s natural to feel angry with your partner at times. Being a family carer would test the patience of a saint. It’s not their fault, and they don’t want to rely on you, but they have no choice. You didn’t sign up for this though, and you are doing the best you can.

“Finally, my best piece of advice would be to find a level of acceptance. It took me a long time to understand that, with the best will in the world, I could not stop the progression of Mick’s dreadful disease. If you are able to accept that you cannot change the situation, you will find some inner peace.”

We are extremely grateful to Diane for sharing her heartfelt and honest story, and thank her for her advice to other carers.

If you are living with Multiple Sclerosis, or caring for someone who is, the MS Society provides a variety of support options, including a helpline and online forum, where you can talk to other people in a similar situation.

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