Fighting for access to family life: being a full-time carer

13 June 2024

Heather and her partner

Heather is now a full-time carer for her husband who lives with MS. Find out how they navigate inaccessible spaces, holidays and government support together.

My husband started to have some health problems in his twenties. We married young as we met as teenagers. He went from a healthy, active, sport loving, fit guy to suffering chronic pain which impacted every aspect of his life.

The diagnosis of MS took a circuitous route and ten years to achieve, but was actually a relief. It didn’t change his symptoms or their impact, but it was much easier to explain to family and his employer who had not always been sympathetic.

Our children were still in primary school when he had to stop work due to ill health, so I continued to work four days a week. My role as a carer has evolved slowly over the last thirty plus years which has meant I haven’t always acknowledged the impact it has had on me. 

I tried to protect everyone and maintain a family life which felt as normal as possible.

Negotiating family holidays with children and a husband in a wheelchair was challenging.

We once had a standoff in a Spanish airport as security staff were insisting our two children couldn’t accompany us through the disabled area, and I refused to be separated.

On another occasion, a lift in a hotel in Paris was too small to fit our wheelchair. Thankfully I am a bit stubborn and like to problem solve, and by removing the foot supports we squeezed in. I often felt like a pack horse, laden down with a rucksack and pushing a wheelchair. It wasn’t a glamorous look.

We’ve muddled through as a family. 

A sense of humour and a lot of resilience has helped.

Booking accessible tickets for a show as a family seemed to be an unusual request. We were almost ejected from a concert as my husband’s lack of mobility was deemed a health and safety risk, but I wasn’t giving up our front row seats for anything.

Surely, we weren’t the only people who were fighting for access to family life, but many times it felt like we were.

Wheelchair accessible family rooms in hotels were also unavailable, and we didn’t have the funds to pay for two adjoining rooms as was suggested. Just negotiating life felt draining and left little in my tank for self-care.

The pandemic cancelled our care package of a lunchtime visit to my husband, which combined with a sudden decline in his health, meant I was unable to work. This was unexpected and impacted our finances, which caused a lot of anxiety.

I also realised how much I relied on my job to balance the burden of caring.

Looking back, I now realise the toll that juggling all the balls of being a mum, wife, employee, daughter and carer had taken.

I had no hobbies or interests of my own as I had never had time to pursue them. I had found that most existing help was aimed at older couples or parents and I struggled to find a peer support network.

I’m slowly adjusting to being a full-time carer. Although, I would say that I’m a slow learner and it’s only taken four years!

Some days the sense of responsibility feels overwhelming, but I try not to worry.

I’m thankful for the opportunity to spend precious time together as a couple and family.

It’s also important to prioritise some self-care. I feel I am still muddling through, but technology has made support more accessible. I’m a dinosaur in terms of social media, but I’ve managed to connect with some like-minded carers, which has made a huge difference. I can be honest, and they just get it.  

I am thankful that our children assure me that they do not resent having a disabled parent, and in fact this has made them more considerate. It’s encouraging that the profile of carers seems to be increasing and my hope is that this will translate into an increase of support and resources in the future.