Geoff Almond’s wife Jean was diagnosed with multiple sclerosis eighteen years ago, and he became her part-time carer. In this week’s Real Voices, he describes the experience of sharing care responsibilities for his wife with professional care workers, and how his wife’s condition affects their lives.
My wife Jean has MS. She’s quite severely paralysed and has become quadriplegic over the years. She was diagnosed about eighteen years ago with benign MS, and with it being benign it was believed that the disease wouldn’t really affect her. For lots of people with benign MS, you wouldn’t know they had it from looking at them. It turned out sadly that that wasn’t correct. She eventually after a number of years got worse, especially with her walking. The disease first showed up in her eyes, which is quite common. She was having these relapsing and remitting symptoms, which is where a symptom shows up and then goes away again, but you’re never quite the same as you were before the episode. Eventually she unfortunately had to stop working. Jean was a schoolteacher, and we’d met whilst working at the same school as I used to teach as well. I wish it had been different, as it took a long time for Jean to get properly diagnosed. I think if she’d had a diagnosis sooner she could have stayed working for longer, because adaptations at work could have been made. But she was deemed unsafe to work by the local authority as there was a concern that she would fall on a child or something. She had to reluctantly give up her career.
The very first care worker we had still visits to this day. I remember the first day that I left Jean with her and drove to work. I cried in the car, because I could no longer look after Jean on my own. We decided between us that I would carry on working rather than becoming a full-time carer for her. That’s when she started on the part-time care package provided by the local authority, so I fill in during times when she doesn’t have a carer.
Being quadriplegic, Jean can’t really do anything for herself. She has no use of her arms and legs so she’s always in her wheelchair. A way that it’s massively affected our lives is that we have to bear that in mind before we do anything. We have a mobility vehicle which allows us to go out and about. She goes to neuro physiotherapy at the moment, which has been brilliant for her. We employ three or four people to care for Jean during the weekdays, and we have a PA who has been with us for a long time, who comes every weekday morning and evening, to get Jean up and to put her to bed.
The most challenging aspect of caring for a loved one is when things go wrong. She has a specialist hospital bed with an air mattress, and minor things such as if something goes wrong with the bed, that causes difficulties and can be quite stressful. It’s also tricky if one of the carers calls in sick. But we try to carry on the best way we can. Obviously it’s completely changed our lives, such as we had to move house and move into a bungalow so it’s easier for Jean to move around. The thing is, as I get older, the more worrying the future becomes. It’s so important that the carer stays well, just as much as the person being cared for. The last thing you want is for the carer to be burnt out from caring, because it damages the relationship between the carer and the cared-for. I have a lot of other interests, which is a really important part of making sure I take care of myself. I got involved in carer’s issues, which is what led me to work with Carers UK. I signed up for the local carers’ centre in St Helens, and for quite a number of years I’ve been their treasurer. Some years later, the chair of the centre suggested that I might like to be a trustee at Carers UK. I did that for eight years, for two terms. I was then the Vice Chair for some years. I’m also the governor of two primary schools. It’s those sorts of interests that get me out of the house, and the care package we have allows me to do that.
There’s lots of support available for carers. The carers’ centre provides more practical support, they do benefits checks and welfare help. Carers UK have lobbied for better deals for unpaid carers, and they also have a helpline for supporting carers. I think people don’t sometimes realise that they are an unpaid carer, because they’re caring for their wife or child or another family member. They don’t know that there are resources for them where they can access support and sympathy. It took me a while to realise that. As I mentioned before, I was upset when we first got professional support because I felt like I was handing the responsibility of caring for my wife over to a stranger. But you’re not really handing over, because you still have that commitment to the person you’re caring for. Although you have professional help, at the end of the day it’s still down to you.
It’s a massive responsibility. You have to be thinking of these things all the time. There’s only two of us in the house most nights, and so I have an alarm in my bed, and if I’m out of bed more than 10 minutes it will be set off and someone will come over to check on us, so I have to be careful. We’re going to London next week to see my daughter, and you can’t just book two train seats and turn up, I have to ring up beforehand and ensure that we’ll have passenger assistance, and a wheelchair space on the train, so it just takes more effort. We don’t take as many holidays anymore because of the hassle, and I think we’ve got to the point where we can’t go away just the two of us anymore, we have to take someone with us. We have to ensure that there’s wheelchair space on the flight, that the forms are filled in properly, that help is available at the airport, that the hotel room is suitable, that the taxi that picks us up from the airport is wheelchair accessible, it takes a lot. Things sometimes go wrong. About four years ago we went to Dubai, and my daughter and our PA came too. We got to Dubai and the taxi that was meant to pick us up wasn’t wheelchair-friendly. There were only about eight wheelchair-friendly taxis in the whole of Dubai. We have to think about everything before we do it.
At the end of the day it is a case of adjusting, and my wife has had a huge change from being active and able to the way that she is now. She has a great disposition, and she’s happy most of the time, which in turn helps me. These things happen, and it’s not the way you think life is going to be when you take your marriage vows, but you get on with it. You can lead an almost normal life. Ten years ago, I was the mayor of St Helen’s and Jean was the mayoress, and she wrote a book called “The Mayoress with MS”. We’re still able to achieve great things like that together, and even though we’ve had to adjust and we can’t live life as spontaneously as we used to, it’s always going to be worth it.