What Richard really felt he lacked was a schedule for his loved ones. “What I need is, ‘When you’re in level one, this is what happens, then when you’re in level two, that’s what happens, then level three, four, five, and so on.’ I had to learn all this for myself.
There were several things Richard wanted to know from the start. A pill box with days of the week and days of the week would save her from overdosing on the medicine, for example, forgetting that she had already taken it. “Caregivers need a forum or WhatsApp where we can share advice and tips, this has been very helpful for me,” he said.
Although this was not easy, Richard was fortunate to be in a position to employ in-home caregivers to help with him. Some stayed half a day before throwing in the towel.
After an extensive search, Richard found a group of caregivers. After dressing and undressing, they arrive at 8 in the morning, he explained. “They took me for who I was not. It was the best way to do it: Sue wasn’t worried about me because they were playing my part. They need love and support that can come from anyone.
The transition from being a devoted husband to a general caregiver was a difficult one for Richard. “We had a happy marriage for 50 years, it was magical from the first time we got together at a school dance,” he says. “There is nothing circumcised or faded. It was an incredibly fun and happy marriage. When she got sick, she floated. You will lose your loved one. She or he, is no more.”
It was very disappointing. “I spent my career solving problems, but it was a problem I couldn’t solve — of course, it pissed me off at times,” Richard said. “I resisted not wanting to let down anyone caring for a loved one with a terminal illness. There were a few times when I wanted to pick up the phone and tell my kids that I couldn’t do it anymore. You beat yourself up, you think, ‘Give up, I owe my wife all the fun years I could get through this.’
Still, Richard couldn’t let the disease take over his life. His “wonderful” friend, John, contracted his disease. “He calls almost every day and asks how I’m doing and what he can do to help,” he says. “Many friends helped, but many were struggling to cope. You need close friends who can take care of you. John went out of his way to get me out of the house, to participate in my hobbies. You need that.”
Doctors suggested that Richard look into respite care to give himself a break, and finally the time has come. Fortunately, a friend ran a care home and was willing to host Sun for a week.