I haven't updated for a while.

Our family has been doing fairly well, with my husband progressing slowly, though steadily in his HD symptoms. He has managed to keep his aggression under control, which has been the best measure for managing him safely with 2 kids at home.

I had been working as a home care occupational therapist ever since his return to us. I felt the need to decrease my hours to part time about 6 months ago, when I was having a hard time balancing a full time caseload with kids activities, managing the home, and keeping up with doctor appointments. Though we took a financial hit, we are managing through simplifying as best as we can. I am happy to be able to care for him as he wishes, at home with his family.

Rus had a fall about 2 months ago while running outside. He didn't tell me about it for 2 or 3 days, until I saw how swollen his arm was. We went to the doctor, and he had an elbow fracture. Two months in a brace, now over, he is still more dependent on me for some of his personal care than previously. Sadly, he has not been exercising anymore, so I can see a big change in his chorea. I'm hoping that we can get him out for walks in the park (the kids and I need to get more exercise as well) once the weather gets nicer.

I'm more concerned lately with his eating and swallowing. Sometimes he holds the food in his mouth for a very long time, as if he can't figure out how to chew it. I offer some strategies, like putting down his fork, allowing his body to focus on just chewing. This helps a bit, but I am more and more concerned with his being alone.

I have decided to find work I can do from home. With my medical background, I'm thinking I can easily transition to medical transcription from home, and be there for him through the day. I am hopeful I will find something to support getting medical insurance for myself and 2 kids. It would also be nice not to have to fill to gas tank twice a week..

I think my advice as a caregiver, partway through this process, is don't be afraid to keep looking down the road. I need to anticipate staying home with my husband, and need to allow time to train for a program. Though we are not desperate for him to have full supervision, I can see it coming.

What other changes have carevigers made to support their loved ones with HD?

PattyC

I now stay with the Wife full time.

I know it will be great if you can find some work you can do from home.

Being able to continue with my profession from home is not an option.
Unfortuanely the Wife is at a stage where she wants me to be with her and gets upset if I try to stay abreast of whats going on in my industry via the computer or the phone.

Sounds like good advice from a great caregiver. You are the one who has to shoulder the burdens for your family and that's a virtue everyone doesn't possess.

Mike

Thanks Mike. I try. I think the key is in accepting the situation and modifying my expectations of him.
He has started to help a little around the house, what he can.
Patty