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[quote=Anonymous]BTDT about 2 years ago when DH was diagnosed. Advice given is good. Definitely head to an elder care attorney pronto. Working through that helps and will give comfort to your kids knowing there are plans in place.

Make sure you learn about the potential horrible side effects of the meds and get financial control set up asap. We were upfront about it and I told kids about all the cognitive issues they could expect aside from the.many they already see. DH has more cognitive issues than physical for now.

I haven’t talked to them about life expectancy but I imagine they’ve read up on it. I encourage them to enjoy their time with him but we don’t ask them to come to every holiday etc. unfortunately PD has taken DH’s ability to have meaningful deep relationships. It is a cruel disease. The kids are trying to make their own peace with it, but we aren’t at the worst of it yet. Ours are just out of college and still in college so we want them to enjoy their emerging adulthood without too many restrictions due to illness, given we’d dealt with a child’s chronic illness earlier and that was also stressful.

Good luck OP, it is a terribly lonely and brutal disease for both the person with PD and the caregiver. It’s like we are in 2 different worlds much of the time. I recommend you look at the caregiver support groups on Facebook for support you’ll need. No one in your circle will relate unless they’ve already dealt with it.[/quote]

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