My mother is known and well-loved by a lot of people I work with and attend church with (I teach at a church-based school, and she also is a part of the same church/school community). These people are very sad and worried about the changes they've seen in her. Nearly every day someone asks how my mother is doing. I love these people for caring, but I'm so tired of answering this question, especially because if I talk about it for too long, I break down and cry. This is particularly troublesome at work when I have caring teenagers then asking me if I'm ok when they see my red eyes.

What do these co-workers and church members expect to hear? What can I say? "Fine" isn't the truth, but I hate sounding negative all the time. She's not going to get better. She gets worse at least weekly, sometimes even daily. She's dying. When I simply answer truthfully "she's declining", they ask more questions because they don't know what else to say. I don't want to have to repeat the story all the time. Has anyone else encountered this? How do you answer that question?

I've found the best answer is "about the same."

I usually say, we're hanging in there. Or another one I say is (while smiling), "the same, some days are bad, other days are worse. Most people just say sorry and change the subject. Bernie

I usually say either - Today is a good day, or - Things are not so good today. Most people don't push any more when I say that. If they do, and I'm not up to answering, I just change the subject, and they usually get the hint. I know people mean well, but like you, some days I can't handle the questions.

I hear you! They are well-meaning but oh, so tiresome! I often have the urge to respond with some really outrageous statement, like, Well, he's been such a handful this past week they had to put him in the dungeon or We're both going to jump off a cliff together tomorrow. Of course, I don't, I smile and say, About the same--thank you for asking.

We were just discussing this at a caregivers support group meeting today. What really makes the PD caregivers mad is when the person says "Your husband/wife/mother/father/sibling looks so good!" as if outward appearance means the person is healthy and there are no problems. We concluded that most people don't really want to know the truth or the details.

Yes, "looks so good," or in the case of my mother several months ago, "sounds just fine," which is what all my family in other parts of the world said after calling her and listening to her do showtime. After learning the wisdom of others on the forum, I didn't argue but just let matters take their course. Now the family can hear for themselves. People mean well, but they just don't get it.

Julianne

Yes, from this side of the situation, "How is your LO doing?" is tedious and dumb, especially as the disease advances.

On the other side of the situation, though, it is really hard to know what to say. My former son-in-law (my granddaughter's father) was dying of cancer last year, at home, with hospice. My granddaughter was taking care of him at the end. I'd call. I suppose, looking back, I could have just said "I want you to know I'm thinking of you today." But I generally asked, "How is it going today?" Well, jeeze, how did I think it would be going? She's diapering her father who is dying. She's dealing with pressure sores. She is seeing his cognitive abilities slip away. But she'd either say, "about the same" or, if she felt like talking and maybe I was the first to call that day, she'd give me a lot of the details and what hospice said and who was going to visit that day, etc.

When people ask me dumb questions or offer me dumb advice, I try very hard to respond to their intentions, which are almost always above reproach, instead of to the dumb things they say. But it is hard, isn't it? Good thing we can come here to vent!

Oh my, Leone, isn't it amazing that anyone these days would not know what being in hospice means?

I went through this when my stepmother died. Many people really have no idea of what dying is like. I think they believe it is like what they see in the movies. Moreover, they mean well and think that a visit will be comforting to the family, if not to the dying person. It's not easy to explain politely to persistent people that it isn't a good time.

Julianne

Yes. You all get it! I have people often telling me something my mom did which they perceived as a positive sign she's getting better. It's always something insignificant, but they want to believe that she could actually get better, so I think they imagine improvements or misread what they see.

The confusing thing is that LBD patients can fluctuate, so sometimes they do seem to be doing better. It's natural for someone who doesn't understand the disease to assume that it's a sign of improvement that means the person is getting better and the disease is going away. Or as you said, maybe they just read something into what is going on and there isn't any real improvement. Either way, it's very hard.

Julianne

Except for one of my dad's friends, everyone was pretty realistic about "how he is" or "how he is today". This one friend, who is a retired RN AND a current hospice volunteer of all things, would say to my sister and me "I hope your dad is better soon." Or she'd ask how he was. She knew a lot of the details about what was wrong with him, and that he was declining rapidly.
Interestingly, she was seeing signs back before his big decline and she'd call me and tell me what she was observing that I hadn't seen. It really makes me wonder about the state of her health. That was so odd and uncomfortable when she'd tell my sister or me "I hope he gets better soon." That is not a helpful thing to say when someone is dying of an illness that has no possibility of a cure. Lynn

I always appreciate someone asking how Frank is, even though I'll never be able to say he's better. I usually say we have some "OK" days and some "horrible" day, this one happens to be ??. I think they don't know what to say. I must say 9 out of 10 also ask how I'm doing. When one of our good friends was dying, I frequently told her husband to let me know if I could help in anyway. I knew there wasn't anything but what do you say? I think most of them mean well.
Gerry

Thought many of you might be interested in this article:

http://www.npr.org/2011/04/09/134463410 ... eir-legacy

Lynn