Susan P. has been married to her husband, Bob, for 16 years. He was already retired when they met, so when Susan went on business trips, he got to tag along. And when she also retired in 2003 and the pair moved to Arizona, that’s when the real adventures began.
“That’s when we really got to travel,” Susan said. “We went somewhere every year. We traveled to Australia, Italy… once we even took a boat from San Diego to Hawaii.
Susan said she is glad the two of them got the chance to travel, and they “got it out of our system.” Because once things began to change, she admitted it would be a lot of work, and not very relaxing to travel now.
“There were things I noticed, after a while,” Susan said. “He was a lineman for the power company, where he did electrical and woodworking jobs. Eventually he started calling his buddy over to help with things he should have been able to do.”
After that began to happen, along with an alarming was a driving incident, she knew something was changing with her husband. They began to run tests through the summer, and it took until fall to get in to see the neurologist. It was a six-month process. By the first of the year, they had the diagnosis.
“It was an early-on thing, too,” Susan said. “I got a call one day from a police woman, who said Bob had taken the dog out for a walk, like normal, but today couldn't find his way home. Someone found him and called the police for help. It’s hard to get a call from the police.”
Susan was not sure what to think, and was afraid of where this road would lead the two of them.
“My fear was that there was no hope,” Susan said. “I was afraid there was not really a lot you could do; just a long and painful process.”
Susan said the pair doesn't have a large family. While Susan’s mother has helped a lot, she is elderly and understandably can’t always be around. She said she and Bob have really used the Benevilla care systems, such as the day care programs and support groups.
“Benevilla adult day care, then the Area Agency for Aging… these helped a lot,” Susan said. “It’s a wonderful thing. You start learning about the others in your group, as well as the spouses. It’s like a whole other family. We even occasionally go out to eat, or go see a movie with some of them.”
Susan said it was very hard to go to the support group the first few times.
“You hear all these people, and you know you’re going to be in those shoes later on down the road,” she said. “It was very hard for me. Now I go more regularly, most of the time. I know most of them, you start to care about them… some are quite inspiring. They may be having a lot harder time than you.”
Susan also said Care Pro was also a great service that helped them with this journey. The program, run not by Benevilla, but through Arizona State University, is a form of training for caregivers – it helps family members know what they can expect, what to be ready for, when they care for someone with Alzheimer’s or dementia.
“Care Pro should be required for every caregiver,” Susan said. “I’m an R.N. but I still learned a lot. It is specifically for caregivers; it teaches you to appreciate the little joys, to look past the big ugly of it. When I see people come in towards the end, at the end of their rope, at their wits end, I feel they could have been helped sooner by this group… They could have had that training.”
Susan said her advice to people in the same situation would be to get help – to stay connected. In addition to looking online and in the community for resources that can help, she said most importantly, they need to find others in the community to connect with… others who have gone through the same.
“If you don’t have that connection…” she began, “Sometimes I go online and read these support blogs – but sometimes I can’t even read them… they are so sad… But the people in these support groups have that physical contact. Those people have compassion for each other. And the members of the group need to encourage each other to come back sometimes. Not every week’s session is easy, but again, it’s kind of a family. That’s how a family is.
But the most important part for Susan – what she hangs onto the tightest – is the joy she finds in the little things. And the love she has for her husband, which grows stronger every day.
“You try to realize … To not dwell on what was, but what is – as they say in the support group, ‘the new normal,’ whatever that is,” Susan said. “I still find joy in things. He’s a very sweet man. Many have fewer resources than I do. I enjoy the small things now a lot more. I could do a lot worse.”