Wow, Lynn, powerful.

Good article, Lynn! Thank you for posting it.

Jeanne, what a perfect example of "Minnesota Nice." It does help to look at the intentions, if you can, instead of the repetitiveness of the question. In Minnesota, gang, we tend to smile and nod and find some private place to hide and scream.

Actually, who the person doing the asking makes a difference to me. There are some people who, I know, are really concerned about me and Mom and our whole family. Their repetitive questions touch me and make me feel cared for. Mostly the other questions come from family acquaintances, and I've recently come up with an answer for them. "She so loves to have visitors and receive cards. Please don't hesitate to stop by or send her something." And some people actually have followed up by sending a card.

I've become shameless in soliciting attention for Mom.

Kate

Lynn, haven't read the article yet, but will this evening.

Kate - I used to do a lot of that too, especially with people who were really good friends, who hardly ever went to see him. They'd follow up the "how's your dad" with "please let me know if there's anything I can do for you." I'd always answer with "thanks for offering. Yes, you can go visit him as often as you can get there. He really needs the company and appreciates it. He knows who everyone is, so don't be afraid he won't recognize you." It made me really mad that some VERY close friends didn't see him for probably his last 4 - 6 months.
Nice to see you on the forum again, Kate. You're not here much these days. Hope things are going as well as they can. Big hug, Lynn

I encountered this again last night, and I'm afraid I wasn't very gracious. I saw a high school classmate of my mother's at a school function, and even though she knows my mom has a progressive, fatal illness, she asked me how she was doing. For some reason, whenever this particular person asks, I get the sense that it's more a morbid curiosity than a genuine concern. I hope I'm wrong about that, but that's just how it seems to me. So I said, "Worse. That's a hard question to answer because I always have to answer that it's worse. The next time you ask, I'll say the same thing." I just didn't want to talk about it anymore, and that seemed to do the trick. She didn't ask anything else. Now I feel bad, but then I tell myself that it's my right to choose when and to whom I talk about it. I do keep a blog, and much of the focus is on my mom's progression. I'm thinking about just telling people that it's hard for me to talk about, but they can read my blog.

SandwichMom, I know exactly how you feel. We live in a small town now and everyone knows everyone (sometimes makes me wish to go back to the big city we came from where no one knew anyone!). So everyone is always asking about my mother. I am confident I know who is genuine and who is just nosy. I doubt you are imagining that, either. And don't feel bad about how you responded. We can only take so much and anyway it doesn't sound like you said anything terrible in the first place. You do have the right to decide who needs to hear the details.

I think referring people to your blog as you described is a great idea! It gets you off the hook and also satisfies them. There are so many times I just don't want to talk about it. Lately when people ask, I am down just to saying, "Terrible." Period. Then they say something like, "Oh, I'm so sorry," but they don't inquire further. And I change the subject. If it's someone I know is genuinely concerned, I can always volunteer more if I feel up to dealing with it. Really, this stuff is so gut-wrenching, we need to take a break from it sometimes.

Julianne

SandwichMom,

The blog is a great idea. Today, I started something I wish I'd thought of earlier that is similar.

Is anyone out there familiar with a website called CaringBridge.org? My niece has been using it recently to keep everyone, even close relatives, informed of the progress of her baby son, who had heart surgery shortly after birth, a month ago. It was just too painful for her to have to repeat everything, even when the listener was someone very close to her. So instead, she started on CaringBridge and just referred everyone, even her Mom, to the site. It has been a real blessing for her. A friend of mine has also been using it to keep people up on her struggle with breast cancer.

As dementia is a slightly different situation, I checked with CaringBridge to be sure they were OK with my setting up a site for Mom. They were enthusiastic. So I put the site together over my lunch break and I've already had 3 visitors - one signing the guestbook. I think I may make up some cards to hand to concerned friends to ask them to check the site for updates rather than asking me to continue to repeat myself. We'll see how it goes. I'm not the best at keeping things up, but there is some incentive for this one.

Anyone else who is interested is welcome to go to CaringBridge.org and set up a site for themselves. It's pretty easy and didn't take a lot of time.

Kate

Kate, thank you for sharing that. I've been wondering if Caring Bridge would be a good media for us, and I'm glad to hear that it is working out for you.

Thanks for the welcome back, Lynn. It's actually a sign that things are better that I've been writing less often. I'm actually starting to do other things that I enjoy since Mom is well cared for in the SNF. My sister and I still make sure that one of us is there every day, but she no longer needs 100% of my attention. I'm here more often when I'm depressed - you guys are my lifeline.

I read the article and it is excellent. I sent it to my bipolar ex-journalist sister and suggested that she might find doing something similar both interesting and fulfilling. I hope she tries it. She's a great writer.

Take care. I'll try to check in more often.

Kate

Glad you are able to get some of your life back Kate. It is so important to take care of yourself, and some of that is just being able to do simple things you used to enjoy. It's so easy to lose ourselves in the CGing process, and when you are doing the direct care 24/7 it must seem impossible to spend any time for yourself. Sounds like your mom is in a good facility and that takes a lot of worry off you and your sister.
Caringbridge is a wonderful way to let people know what's happening with a LO. I've been involved with it twice and it worked really well for those of us who were really concerned and wanted to keep in touch about someone we cared about. I'd have used it for my dad but most of his elderly friends were computer illiterate unfortunately. I used group emails to keep our few family members informed. Lynn

Kate,
Caring Bridge is an excellent way to report how your LO is doing, My reply to many people at the time with the "How is he doing?" question was he is doing a well as he can be!

Thanks again for the suggestion !

So what is the best thing to say to the family member of the LO when you meet? You can't just ignore the issue. Some of the dying LOs will be people you know, and some will not--some unknown LO in a far away place.

How about something more general, like, "How are things going?" I meet with a lot of people whose situations I don't know, and I find a general query like that expresses concern while allowing the other person to take the response wherever s/he wants to go. In the case of a LBD CG, the response could be anywhere from "about the same" to more detail about the LO, depending on how much the CG wants to say.

Julianne

I guess I don't really want questions as much as supportive comments along the lines of "I've been thinking about you and how much stress you're under. I'm so sorry you're going through this. Let me know if you need to vent or cry or talk things out" or "you're doing a great job supporting your parents through this" or "I prayed for you last night--for wisdom, patience, strength, and peace."

Also, I don't mind this question: "What can I do?" I will answer it, though, with something very practical, so I don't want people to ask that unless they are ready to help. The last time I was asked that, I answered, "My dad needs his new pants hemmed", and she said she'd call him to arrange a time to come help with that. I'm not sure if that actually happened, but the pants are hemmed, so I think so!

I also wouldn't mind someone asking me how they can learn more about Lewy Body Dementia. I like it when people write it down and ask for the correct spelling. I know they are going to actually look it up. It will answer a lot of questions for them that would be more painful for me to answer.

Those are all very good points. Usually when I get the questions, though, they seem to be asked just as a way of expressing concern. Unfortunately, I don't get many people who seem to want to roll up their sleeves and do something helpful, but I wish I did. And as far as the disease, I've noticed the minute the word "dementia" is said, people think I am talking about Alzheimer's. I will say, "My mother had Lewy Body Dementia," and people will answer with things like, "Oh, my uncle has Alzheimer's, too." I just don't have the time or energy to straighten them out, so I just go along with it.

Julianne