I don't have a problem with using the work dementia when walking to others, with Frank I just say it's the disease that distroys different parts of the brain. I'm not sure what he hears or understands. I DON"T say diapers, I either say night pants or other pants when talking to him.

I think it's like cancer use to be, it was the "C" word. This is life and sometimes it stinks, so we just have to be sensitive to how others feel.

Tomorrow we are meeting Frank's brother and wife for lunch, they live 6 hrs away so we meet in the middle. His wife had to push the issure to get together, George is troubled seeing Frank in this condition and would prefer to remember him in earlier years. Again, I respect his way of dealing with this, I don't understand it, but do respect it.

Have a good day,
Gerry

Gerry - I hope your visit goes well tomorrow. I don't know how or if we can ever get through to people who say they aren't visiting because they can't stand to see a person in the condition they're in, or they want to remember the person as they were. That's all well and good, but do people who stop visiting have any idea of how hurtful that is to the ill person or to the CGs and other LOs? Do they think the rest of us "enjoy" seeing our friends or relatives in their state of poor health?
I'm sure I sound like I'm on a soap box here, and perhaps I am, but I think it is very selfish to stop seeing a LO for those reasons. None of us likes to see people we care about in terrible condition, but we do it because it's the right thing to do. Some of my dad's friends stopped seeing him for this very reason, and when they'd call me and say "what can I do to help out?" I'd usually respond "go see him. I know it's an hour each way, but if you can see him once in a while it would mean so much to him." There were many people who saw him in his last week and told me at his memorial service that they were glad to have a final visit with him and thanked us for calling and telling them the end was near.
OK, I'll get off my soap box now. Lynn

Part of me wishes I could just remember my mom the way she used to be and not have to see her now, but I'd never abandon her like that. I have a beautiful picture of her with my dad and my son when he was little. All three are laughing. I want to blow it up huge and frame it, but right now it hurts too much to even look at it. After she dies, though, that's what I'll do. Then I'll have the really good cry I need to have but have only done in fits and starts because grief feels so "interrupted" while she's still alive and I have to be strong for her and Dad.

SM: I can tell that seeing your mom the way she is now does not prevent you from remembering her how she was in the past. I know how my mom is now, and how she was when Dad died, and how she was when her first grandchild was born, and how she was when I was in high school, and how she was when I sat in her lap and she read to me.

When people say that they "want to remember her the way she was" do they think viewing her now would somehow erase all the other memories they have of her? What a strange excuse.

my perspective on the remember as….

I just got a diagnosis this march…..I haven't changed much since then….

I have a sister that told my other sister…'she isn't ready to talk to me'…..

does she think she will catch something from me?

probably already has…..same genes and environmental exposures….

so….what is she doing except hurting me?

okay….she is hurting herself….she is wallowing in her fear…she certainly isn't going to hurt me by talking to me...

and I am the one with dementia….

we still hurt…

it is very hurtful to cut someone out of your life because they are sick…I need you in my life now….more now than ever…

I used the word 'cut' on purpose….

what a strange disease….

I had to look up two words to write the previous post….

hurt….

cut….

they didn't and still don't look right….

Craig, early on Coy used to look words up in the dictionary almost every time he wrote anything. Now he mostly asks me. It is words like box and dish and went he was trouble with ... words he as known how to spell for 3/4 of a century! You are correct. This is a very strange disease!

That is too bad about your sister. I hope she comes around. I wonder what she is doing to "get ready" to contact you. It isn't just the disease that is strange, is it?

I can't help but think that those who "didn't want to see their LO in their current state" will be the ones left with a lot of guilt afterward for abandoning their LO. It really is painful when people abandon their relatives and friends when they need them most.
I wish everyone a peaceful day. Lynn

Who knows? But one thing I've learned over 66 years is that we can't change other people and we only frustrate ourselves by our expectations of them.

Craig, I fully understand what you are going through. Since my MIL's diagnosis my sisters-in-law quit calling her. Not birthdays, Christmas, etc. They do not want to discuss her condition AT ALL. It all falls on my husband and myself. Lucky for her I come from the "Do-Good" family which takes care of everyone who need taking care of. Genetically programmed to take care of people, I guess. Anyway, I see the hurt in her eyes when I call my Mom every day and her own daughters never call. I hope your sister comes around. You sound like a great guy.

Frank and I met his brother and wife for lunch. The 2 1/2 hr drive went well, Frank slept both ways. I could see his brother was shocked, he hadn't seen Frank since November. I was struggling with tears, I live with this disease so don't notice the changes, but could see them thru his brother's eyes. Frank never looked up or said a word, he took one bite of lunch. This is the last time we'll plan on going out, except for Dr. appointments and his Dr said when it gets to hard to get him there, we can talk over the phone. He does spend much of the day sleeping.

Take care, Gerry

Gerry, I'm sorry you had to experience the hurt all over again. For everyone, I don't understand people who avoid their loved ones - I just feel like it's abandoning them at the worst possible time. And it's selfish, in my opinion.

My older brother doesn't go to see our mom even though he lives 15 minutes away. It hurts me so much because I can't go see her as often as I'd like and yet he just won't do it. He makes excuses - he has to work, he is busy, he and my SIL are busy with my niece. I just don't get it. He has no clue what is going on and he doesn't want to. He doesn't seem to understand that this is going to get so, so much worse. He would ask my dad how mom was doing when she was first diagnosed and came home from the hospital and my dad would start to tell him the details and he'd interrupt and say, "No, I don't want to hear all that, I just want to know if she's okay". I want to scream at him sometimes but I won't because he'll never realize how important this all is until after mom dies.

And I fully realize things are easier in some ways for me since I live far away from my family but it just upsets me that my brother is missing out on seeing her. My younger brother lives with our parents so he knows firsthand what goes on everyday and the stress our dad is under. I just wish my older brother would help more so dad could have a break now and then.

Ugh, so frustrating, all of it.

I'm so sorry, everyone. It is frustrating and hurtful, and some people are very selfish. Sending each of you a big hug - you will get through this but it will be hard! Lynn

It is very sad how some other's treat our LO's, I think people just don't know how to handle it and it comes off as being uncaring, very sad disease !