OP here -- Thank you all for these very thoughtful perspectives. Your kindness in sharing your experiences with a complete stranger restores my faith in humanity. You've given me a lot to think about and I might come back with questions later. To those of you who are experiencing a family member's chronic illness, I wish you the best.

My husband was diagnosed about two years ago with cardiac amyloidosis--meaning that he's in heart failure, and may be a candidate for a transplant at some future point as his disease progresses.

One thing that was important to our 22-year-old was to hear our commitment to be open and communicative about everything that's going on with him medically. It was surprising how much that allayed her fears. But in retrospect, it makes sense: with so much that is uncertain, the assurance that nothing will be kept from her took one worry off the table.

Best wishes for strength and peace.

Anonymous wrote:My husband's mother was diagnosed with Parkinson's many years ago and he dived into possible treatments - but then he was in medical school, so... My mother was diagnosed with Multiple Sclerosis before I was born, and I don't recall a time when I didn't know - it was just me and my father so obviously I had to help. But also I wanted to! Two very good friends had cancer in their 40s and their teen children were told all the details and were expected to be supportive, which they were and continue to be.

You all need to be on the same team, OP. If your kids don't understand that, I hope you can persuade them that this is important.

I came back to say that my 80 something MIL has lived for more than 20 years with Parkinson's and has no cognitive decline that inhibits loving relationships. She has some memory loss, needs to write everything in her planner and some meds make her hallucinate, but we've been able to switch every meds that did for now. Her physical symptoms greatly handicap her - she is a fall risk, uses a walker and is generally quite frail. But there has not been the type of cognitive decline that some patients exhibit, which is both a relief for her caregivers and a torture for herself, since she lives her physical decline while being entirely aware of it.

Personally, I think I would also really consider my limits. You cannot be the surrogate therapist for your kids, yourself and your husband. If my kids really started to need daily/weekly dumping sessions, I would suggest therapy to them and pay for it if I could afford to do so. Women tend to take it all on in these scenarios to the detriment of both their physical and mental well being.

I'm the child from a second marriage, and my dad already had grandchildren when I was born. I was probably in my teens when the symptoms started but around 20, I think, when he was finally diagnosed with Parkinson's. He was in his 70s at that point. I was pretty sure he had it long before the official diagnosis because of things I noticed in photos although my mom was a bit in denial. (She and I both knew several people who had had it, so neither of us were strangers to it.)

What I will say is that while there are similarities between different people with Parkinson's in terms of symptoms and disease progression, each person's journey will be different in terms of their specific symptoms and how quickly (or not) it progresses.

Michael J Fox's foundation (michaeljfox.org) has some good resources on understanding the disease, as does the Parkinson's Foundation (parkinson.org).

But I would agree with PPs that having his doctor talk to them could be helpful too.

I experienced this as the adult child in my 20s and I will say - to give you a bit of hope - be aware of the possible progression but in my dad’s case he lives a very good life with PD for 20 years until he got something else that killed him. That’s not to say he wasn’t impacted (and he did retire shortly after the diagnosis) but he and mom traveled internationally , had a very active social life, he golfed and had various hobbies and exercised every day (very important we believed) so hoping for a similar course in your family

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.

My husband's mother was diagnosed with Parkinson's many years ago and he dived into possible treatments - but then he was in medical school, so... My mother was diagnosed with Multiple Sclerosis before I was born, and I don't recall a time when I didn't know - it was just me and my father so obviously I had to help. But also I wanted to! Two very good friends had cancer in their 40s and their teen children were told all the details and were expected to be supportive, which they were and continue to be.

You all need to be on the same team, OP. If your kids don't understand that, I hope you can persuade them that this is important.

Anonymous wrote:Having a parent get terminal cancer when you are 40 is completely different than having a parent get Parkinson's when you are in your 20s. these are completely different experiences. Cancer sucks but it typically doesn't cause a slow steady decline over a decade or more. cancer is horrible but it is a different beast.

OP, I am so sorry about your husband. Are you in a support group? Is there a social worker you can ask for advice? My mom was diagnosed with Alzheimer's when I was in my 30s and her sister had Parkinson's (as did my grandparents). I wish my dad had been clearer about what he needed from us. And that I had asked more about what I could do for him.

Have you talked to an estate/elderlaw attorney? really the best thing you can do for your kids is get a plan in place in case something happens to you. I am so sorry for what you are going through.

I agree with this advice - and your plan should also include disability/end of life considerations for both of you, i.e., a plan for both of you, even though you’re still healthy. Take the time to consult with an attorney and talk through with your husband about what you both want, and then talk about it with your kids, all together. Healthcare power of attorney, disability care, finances, etc.

Thinking about these things for young adults in their 20s is indeed different from someone older. My mom was diagnosed with cancer when I was 38, which was challenging because I already had young children who needed me. Hers is the long-term kind, but likely will be fatal, ultimately.

I’m sorry, OP.

Tell them that their father and you need their love and support. Y'all need to have some good times with him while he can enjoy it. However, best gift would be for them to live their lives to fullest and enjoy their young years. Time gone never comes back.

^ agree
and I would add - they are adults not. Time to deal with adult things. There comes a time when your focus should not be on: protecting them from harsh realities. If not now, at least very soon, time for them to be thinking about how to ease your burden not the other way around.

I would see if their doctor is willing to find time to talk to them about the prognosis— I think it’s easier to have that conversation with a dr.

Having a parent get terminal cancer when you are 40 is completely different than having a parent get Parkinson's when you are in your 20s. these are completely different experiences. Cancer sucks but it typically doesn't cause a slow steady decline over a decade or more. cancer is horrible but it is a different beast.

OP, I am so sorry about your husband. Are you in a support group? Is there a social worker you can ask for advice? My mom was diagnosed with Alzheimer's when I was in my 30s and her sister had Parkinson's (as did my grandparents). I wish my dad had been clearer about what he needed from us. And that I had asked more about what I could do for him.

Have you talked to an estate/elderlaw attorney? really the best thing you can do for your kids is get a plan in place in case something happens to you. I am so sorry for what you are going through.

My parents were fairly direct about my moms cancer and the low survival rates. However, we don't talk about that part often because I am sure it would be depressing for mom. I ask how she's feeling and sometimes we talk about the schedule for her cancer treatments but we try to talk more about other things.

I am 40 so older than your kids. I think the one thing it drove home is that my time with her is limited and I try to make the most of it and see her plus bring the kids over as often as I can.

My husband has been diagnosed with Parkinson's. At this time, the symptoms are relatively mild, but we know they will progress. Our adults kids (all in their 20s) are worried and angry and scared. I'd appreciate any advice from those who've been there on either side, as parent or adult child, on how to talk with them about their feelings. Thanks.