Call the LionHeart Helpline

UK: 0800 009 2960 or +44 (0)121 289 3300

Request a callback

Close

Caring for someone with MS

debs and dad blog
25-04-2023

My mum always used to say that it wasn't just Dad who had been diagnosed with MS - it was all of us.

In fact, I don't even remember a time when my life wasn't shaped by MS, right from my family's plan to emigrate to Australia with my brothers before I was born. But this had to be shelved when Mum was expecting me and Dad started displaying the early symptoms that would later be diagnosed as the onset of multiple sclerosis; the uneven walking and sometimes slurred speech that made some people even accuse him of being drunk.

When I was born in the 1970s, there was really no such thing as legal protection against disability discrimination. Dad was summarily sacked from his job and basically stayed home to bring me up, while my mum juggled three or four jobs to keep the family.

debs

I was a real daddy's girl and his condition was just my normal. I thought everyone had to help their dads up when they'd fallen over and couldn't get up. Some of my earliest memories are of him bathing me in the kitchen sink on days he'd struggle to get up stairs. Later on, when he'd finally accepted he would need to use a wheelchair, I can remember sitting on his knee in our local town centre collecting donations for the MS Society.

By the time I was about 10, Dad needed much more support with everyday living, forcing us to relocate to somewhere more affordable and suitable for his needs. In a completely new area, I went to a new secondary school, where perhaps for the first time I felt our 'difference' as a family. I remember being the only kid who couldn't go on a particular school trip because we couldn't afford it, and I got into a fair few scraps because bullies would take the mickey and say cruel things about my dad being disabled.

It seemed there were so many places we couldn't go as a family, things we couldn't do, because there was no access or we couldn't get up the steps: it's one of the reasons I became and still am so passionate about disability rights and believe everyone should be able to access places, jobs, education, whatever their needs.

If you or one of your loved ones live with a long-term condition like MS, it seems to me that life becomes about fighting. My dad was a fighter and lived from his diagnosis in his 30s until he was in his 70s, very much retaining his sharp mind and often dark sense of humour. But getting the care and support he needed to be able to stay at home and the disability benefits he was entitled to could feel like an ongoing and exhausting battle.

debs

My mum was his main carer for many years but sadly she was diagnosed with cancer in 2004 and died 10 months later. Dad's health deteriorated and he ended up in hospital, and later they wanted to move him to a nursing home, which he absolutely didn't want.

At the time, I was living a three and a half hour drive away and had a toddler and a newborn baby. We had to fight tooth and nail to get him home with a 24-hour care package, apart from at weekends, so me and my brothers took it in turns to cover that.

Eventually I felt I needed to move closer to home. As the stay-at-home parent, Dad had done everything for me when I was a little girl, so it felt kind of fitting that for the last 10 years of his life the roles were reversed and I was able to manage his care.

Even though I'd worked in a social care setting and knew the system, it could be a challenge. You have to learn to be an expert in your own care, or have someone in your corner, to navigate things. It's not right that you have to fight for everything - but that is the reality faced by families everywhere.

If you run out of fight, this is where you need advocacy and this is where the voluntary sector can come in.

As an organisation, I like to hope that LionHeart can help people in that position to move forward; whether that's legal or benefits advice, signposting, sometimes financial grants to help with equipment or adaptations, or simply somewhere to turn if you need to someone to talk to.

It's far more common for people to carry on working after a diagnosis now, there are government schemes such as access to work, which offer practical support to the employee and employer.

MS is a long-term condition, the symptoms are very personal to the individual and can not only change over time but can become more severe due to environmental stress, personal relationships, money worries, and concerns about being able to physically manage self care.

The very nature of the condition makes it a journey with lots of twists and turns.

My dad always said that he never wanted to feel like a burden and feeling and being in control of his own life kept him going and kept him strong. But it never hurts to let someone help you maintain that control. Going back to what my mum said, something like MS does affect the whole family so no matter whose diagnosis it is, why not let LionHeart help you all feel in control and keep that strength.

Debra Jumar is LionHeart's data and contracts manager. She joined LionHeart in 2020, after more than 25 years in social care and the charity sector, from supporting families in London's most deprived boroughs, to helping the Government to deliver Sure Start Children Centres nationally.

Latest Posts

2024
February
5th - How youth counselling helped us
2023
November
22nd - Living with an invisible illness
9th - What makes a good trustee?
1st - Things you must do as a final year surveying student!
October
4th - Dyslexia in surveying
September
28th - Reflecting on 12 years at LionHeart
13th - New beginnings and how to embrace them
5th - Losing a sibling to suicide
July
5th - Celebrating one year alcohol-free
April
25th - Caring for someone with MS
20th - How to set boundaries at work
February
17th - 'Calling LionHeart was like being thrown a life jacket'
6th - Spotlight on winter fundraising
3rd - Facing cancer
2022
November
14th - Identifying and dealing with workplace bullying
October
13th - Why make a will?
12th - Living with OCD
3rd - Autism and my road of discovery
September
22nd - Frequently asked questions about LionHeart
August
25th - 25 years of LionHeart
11th - 'Stress caused me permanent disability'
July
18th - Diversifying our board, and why
May
18th - Coaching to unlock a new future
12th - How to help your lonely teen
9th - Asking for help - as the helper
April
28th - Why talking about dying is so important
7th - 9 simple ways to cut stress
March
23rd - Living & succeeding with ADHD
16th - 'I came to see how much of my life was run on adrenaline'
February
10th - "My daughter didn't want to be here any more"
4th - My life-changing cancer diagnosis
January
13th - Reassessing how you drink
4th - Looking to the future
2021
November
19th - How alcohol almost cost me everything
18th - Children's grief and how to help
16th - Alcohol, anxiety and how secrets keep you sick
4th - "I had no idea stress could cause a real physical pain"
October
22nd - 5 ways to get your teen talking
18th - The Positives of Menopause
13th - Baby loss and depression
12th - The pandemic's impact on children's mental health (and what we can do about it)
8th - Don't judge a book - a story of depression and change
5th - LionHeart Back to Work support
September
29th - Post APC submission
16th - How families feel youth mental health
June
24th - 6 top tips if you've been referred
May
20th - Coaching for change
12th - "I'd hit absolute bottom - but it was the catalyst to seek help”
April
22nd - Spring into action by fundraising for LionHeart
March
4th - Reflecting on university mental health
February
15th - My experiences of counselling
January
20th - Worry Time - and how it helps
18th - My furlough & redundancy journey
13th - Volunteering and LionHeart
2020
November
30th - A road to change
2nd - Trusteeship through lockdown and uncertainty
October
12th - The importance of legacies
10th - Overwhelm - and overcoming it
8th - Lockdown and my mental health
September
28th - Creativity at Work
July
20th - Video
June
24th - 'If I can do it, so can you'
22nd - How to ace your APC interview online
8th - Help! I've been referred... what now?
3rd - Your coronavirus concerns, and how we're helping
May
12th - Managing health anxiety through Covid-19 - and how we helped Mike
12th - How coronavirus might be affecting your mental health
March
31st - Rising to the coronavirus challenge
24th - Keep connecting - in a different way
13th - Demonstrating our impact
February
4th - The Big C and grabbing life
4th - "Cancer wasn't meant to happen to us"
January
30th - My journey as a charity trustee
7th - Top 10 tips for CVs and interviews
2019
December
9th - Grief and loss at Christmas
November
7th - Charity trusteeship
6th - How counselling can help manage stress
October
9th - Living with anxiety and depression
July
10th - How coaching can help
May
16th - Changing attitudes to mental health
15th - The vicious circle of body image & mental health
14th - Social Anxiety & how we can help
April
11th - Life with Parkinson's
March
29th - The one about the Bipolar surveyor...
29th - What is Bipolar?
12th - Memory tips from the training front line
January
22nd - Losing a parent
2018
December
7th - LionHeart's support was a game-changer when I failed APC
August
16th - When the reality of motherhood doesn't quite go to plan
July
10th - The story behind surveying's Sisterhood Summit
2nd - The rollercoaster of being a first-time dad
June
22nd - My father's suicide and what I've learnt
14th - Tips for your RICS APC final assessment interview
7th - Trust in the charity sector
May
21st - Is it really okay to not be okay?
April
17th - Building resilience through your APC
January
8th - 7 ways to get more active this year
2017
December
4th - Coping with loss and grief at Christmas
October
5th - "I was told I might not be cut out to be a surveyor"
September
26th - Resilience, and why we need it
August
21st - APC Revision Top Ten Tips
July
12th - LionHeart on new fundraising code of practice
June
19th - Living with 'invisible' illness
14th - How LionHeart helped us live life
13th - Men's Health Week 2017
May
22nd - Living with panic attacks
18th - Why we must care about work life balance
11th - The chicken-and-egg of mental health and shame
February
2nd - What I learnt from Dry January
January
31st - "My 19-year journey to MRICS is what made me"
5th - Ways to be kind to yourself in 2017
2016
September
7th - Suicide prevention
August
1st - Coping with APC stress
July
13th - "I constantly watch my husband for suicidal signs"
May
26th - Dealing with referral at APC Final Assessment
19th - How mindfulness can help your relationships
18th - "I live, and thrive, with depression"
17th - Men and mental health
16th - Mental health and your relationship
April
26th - Starting out in surveying
March
11th - A happy retirement
February
1st - My Dry(ish) January
January
21st - Spring clean your finances
6th - When to consider couples counselling
2015
December
4th - Having a (financially) healthier Christmas
November
18th - How to help a loved one with an addiction
June
15th - Reflections on the Lionheart Surveyors' Football League season
12th - Carers
10th - How LionHeart can support carers
9th - Desktop Relaxation techniques
May
29th - Techniques to help combat anxiety
20th - Helping a family member with depression
18th - Achievements that make a difference
16th - Five things that may indicate your colleague needs help
11th - Helping during a panic attack