What Richard really felt was lacking was a timeline for loved ones. “What I needed was to know ‘When she’s at stage one this will happen, then when she’s at stage two this will happen, followed by stage three, four, five etc’. I had to learn all that for myself.”
There were a variety of things Richard learnt which he wishes he’d known from the start. A pill box with days of the week and times would have spared Sue overdosing on medication, forgetting that she’d already taken it, for example. “Carers need a forum or a WhatsApp where we can share advice and tips, that would have been so helpful for me,” he says.
Richard was fortunate to be in a position where he could hire home carers to help with Sue, though even that wasn’t easy. Some lasted half a day before throwing in the towel.
After an extensive search, Richard found a team of carers. “They’d arrive at 8am each morning, after I’d got Sue up and dressed,” he explains. “They’d take over like I wasn’t there. That was the best way to do it: Sue wouldn’t be concerned about me because they were fulfilling my role. They need love and support which can come from anyone.”
It was an immensely hard thing for Richard, to transition from being a devoted husband to a generic care-giver. “For 50 years, we had an exciting marriage, it was magical from the first moment we got together at the school dance,” he says. “Nothing paled or faded. It was a marriage of incredible fun and happiness. As she became ill she drifted away. You lose the person you loved. She, or he, doesn’t exist anymore.”
It was frustrating, too. “I’d spent my career solving problems but here was a problem I couldn’t solve – of course, it made me angry at times,” Richard admits. “I defy anyone caring for a loved one with a serious disease not to want to give up. There were a few times I wanted to pick up the phone to my kids and tell them I couldn’t do it anymore. You kick yourself, you think, ‘Grow up, I owe it to my wife for all the happy years to get through it.’”
Even so, Richard couldn’t let the disease take over his life as well. His “magnificent” friend, John, got him through Sue’s illness. “He would call almost every day and ask how I was and what he could do to help,” he says. “Lots of friends helped, but many struggled to deal with it. You need close friends around you who can look after you. John went out of his way to drag me out to get involved in my hobbies, to get me out of the house. You need that.”
Doctors suggested Richard look into respite care to give himself a break and eventually the time came. Luckily, a friend ran a care home and was willing to host Sue for a week.