Today new MS Society research found half of family members and friends supporting someone with multiple sclerosis (MS) are not getting the support they need, and a third have given up work as a result.
My husband and I have been supporting our son Trevor since he was diagnosed with primary progressive MS five years ago. Today, aged 38, Trevor is paralysed down his left side, can’t walk more than 10 yards, and uses a wheelchair.
There are many families like ours, feeling the pressure of a broken social care system. Most of us are doing the equivalent of a full time job – or much more. I left my previous employer and found part-time work so I could be at home more often. Now I spend around 70 hours a week washing, cleaning, cooking, driving, dressing sores and tying shoelaces.
One in three aren't getting enough help
Trevor feeds himself but can’t cut up his food. He’s starting to have trouble going to the toilet too, and I don’t know what will happen when he needs help with that.
More than 130,000 people live with MS in the UK, and with one in three not getting adequate help from the state to complete activities like washing, cooking and cleaning, it’s no wonder it’s falling on loved ones to provide free care.
A year ago Trevor could still walk with a stick, get taxis home and go to the pub. He also had a volunteering job two days a week, but they sacked him about six months ago when his disability became worse. There isn’t a lot of work for people who are disabled and who can’t use computers.
I can't remember the last time we had a break
It’s a bit scary when I look back and see the change in the past 12 months. Trevor doesn’t go out any more and I can’t remember the last time we had a break. We go to the doctors most days for one thing or another, and that takes up most of our time. If Trevor wants to go anywhere we have to drive him, and the MS centre is a 45 minute drive each way.
I used to go on holiday by myself a lot, but can’t do that now. There needs to be two of us in case my son falls, so I can’t travel. The only way I could have a break was if one of my other children came to visit. They always offer but I don’t want to ask too often – they work and have young children and we’re all weary and tired.
We're terrified about will happen when we die
My husband is in his 70s and I’m nearly there myself, which brings other worries. My husband has diabetes and heart disease, and I had breast cancer a few years ago, but thankfully that’s all sorted now. We don’t really have time to think about our own health, but thinking about what might happen long-term is one of the most challenging aspects of caring. We’re terrified about what will happen when we die, and I know my son is as well.
Trevor doesn’t complain, and doesn’t appear to be depressed. It’s just as well that my husband and I have a very good relationship with him. But the whole family is under a lot of strain. We go to the GP most days and it takes around ten minutes to get Trevor into the car. Because of our age it’s becoming increasingly difficult to do things like lift Trevor, and get his wheelchair in and out. But the stress is more emotional than physical.
At breaking point
Mine is just one of many stories like this. The adult social care system is under more pressure than ever and failing to provide the support older people, disabled adults and their families desperately need. In fact residents of the UK now have a 65% chance of providing unpaid care in their adult lives. I’m amazed by how much the health and care system has done for us, always appreciative of the compassionate and caring individuals who work in it, and very grateful, but it would clearly collapse without people like us propping it up.
We urgently need a fair, effective and properly funded care system across the UK so no one is forced to give up work to ensure their loved one gets proper support, or terrified about what the future might hold without them. Right now we’re at breaking point, and really do need help. The government has to see just how important that is.
This article originally appeared in the i newspaper.