Family Caregiving Option Provides Comfort and Support

When Jim Gowran’s partner was diagnosed with Huntington’s Disease neither of them knew what to expect. Huntington’s Disease is a progressive, neurological disorder with symptoms that can vary from one person to the next based on what parts of the brain are being affected.

For many people, the disease causes physical changes that can be life-threatening – swallowing problems that lead to choking, for example, or balance problems that can cause bad falls. But the disease can also cause personality changes – like violent outbursts – that can be stressful and upsetting.

Jim’s goal was to enable his partner to stay in their Michigan home and live as normally as possible, for as long as possible. That meant staying at home, with his pets, his regular bed, his regular foods and routine.

But as the disease progressed, it became harder and harder for Jim to be a caregiver while also working full-time. Jim started putting cameras around their home so he could monitor things from work.

The cameras were somewhat helpful but didn’t really take the stress away. “There was always the difficulty of, in the back of my mind wondering how he was doing? Is he ok? What can I expect when I got home?… There was the stress level of what’s going on at home, is he ok while I’m not there. That’s extreme added stress.”

It was becoming increasingly unmanageable. When a social worker mentioned an in-home caregiver, Jim was interested. When realized that he could qualify to be the caregiver, the option seemed even more appealing.

“It’s been a sense of relief, including a sense of financial relief,” he said.

Jim has been able to maintain an income, health insurance and dental insurance, even while being home with his partner all day. “Financially, we can still cover the bills and make it,” he said. “That’s a big concern of people who are involved in a situation like this.”

In many states, someone who qualifies for in-home caregiving can designate a qualified, preferred family member to be hired for that position. This allows the client to be cared for by someone they trust – and who already knows their needs and preferences.

“I know his favorite ice cream, how he likes his meat cooked, his favorite chocolate milk,” Jim said. As swallowing became harder, knowing these preferences made it easier to come up with meals that would work.

“The last two years being able to utilize this resource with Help at Home has definitely helped, I guess I would best say, has eased the stress,” he said.

Jim encouraged others in similar situations to not be shy about receiving help.

“Take advantage of resources that are out there,” he said. “And reach out because there are people who want to help and there is availability even in your own community. I always hated asking for help and there has been people from his church to others that (say) “I’ll do anything that will help.” And I’ve resisted, because I don’t want to be the one to ask for help. But I encourage people to take advantage of any of the resources that are out there because it makes a difference on both the caregiver – a lot on the caregiver who needs the support and help, because a lot is put on their shoulders – and also to the person who is being taken care of.