You don't need to say anything. Just smile.

You just made me smile. Thank You
Mary

Hi Mary - could it be that these remarks are meant in a spirit of trying to be empathic or sympathetic to you and what you are going through? Afterall, CGing does require a lot of sacrifice and it often takes a toll on CGs. I may be way off base here, and maybe these folks are just being mean, but could it be that they are just trying to show you some support as well as your LO? Perhaps finding a way to help them rephrase their "support" might help? Anyway, you are doing an incredible job and I'm glad you have the forum to come to for support also. Big hug coming your way, Lynn

Mary, Kate.....I agree, you have to get to the point beyond the sadness (sometimes you have to go into the bathroom and cry by yourself) and enjoy the moment, because they can also become fleeting as we all are finding out. I also am astonished at the response of well meaning friends/family when they say "you are handling it so well", I always want to ask...."did you expect to see me laying on the floor drooling?".....This is why this forum is so comforting, reassuring, educational, grounding, (you can add many more words) to all of us because only a caregiver knows what another is going through.

I really miss those political discussions, especially after the Sunday morning news shows, really laughing together about a funny show, sharing a good book and discussing it, those moments are slipping away in just the past 4 months......I have learned to keep things simple, scheduled tasks, dr. appts., errands spaced out so there is no need to rush. He still enjoys taking a drive, going to an early movie, and our morning walks.
carol

Lynn, Carol
Thanks again for the support. I guess I have to admit some of these people who appear insensitive to me are probably trying to be supporative in their own way. Another thing I hear often is "he is so lucky to have you". What else would they expect of a couple that has been married almost 55 years? I guess its just hard for every one else too. Sometimes I feel I am trying to pretend that our life is normal. In many ways maybe it is the new normal. I spend a lot of time lately reminiscing days of our youth. Days when our children were small and we were young and youthful. These days our grown children are the ones helping us. I am grateful we have had a lot of years together. We were young when we married. I was 19 and he was 20 and still I have a fear of losing him. I guess in some ways I have but I would rather have him this way than not at all.
Thank you all for helping me lift myself out of the bottom of a bad roller coaster ride. Soon, I hope this ride will start up hill again.
Mary

"he'll out live you because you give in to him all the time".

I'd say, "a small thing for all the love he's (she's) shown me over the years." Or, just as the others have said, just an unfortunate comment from someone who has no idea...smile.
John and I have been best friends for 28 years (23 married). I do miss the conversation, so much...

Me, too!

Oh, conversations! Most of our conversations remind me of the old records with the needle stuck in a grove. Each day starts out the same. "Have you heard from your sister today"? At least we talk. Sometimes when I have the rare chance of having an adult conversation, I find myself chattering like a magpie. Thats why the forum is so good. Someone to talk to.

Agree, agree, agree.....oh to have an adult conversation with him. What amazes me, mornings are better and we take a walk (and the weather is so beautiful here at the coast in South Carolina this morning) and when we see neighbors and stop and chat he can come out with the most profound things, .....then by lunch time and into the afternoon the conversation centers around "it's time to pack the car to go home" or "we need to go to the Naval Base" or "I need to call my mother (deceased)" and the Parkinsons stutter steps show up along with the lewy lean....Cherish the moments. Carol

Oh my gosh Carol, your morning sounds just like ours. The mornings are good but by afternoon, things are slipping. Seems like that window of alertness is getting shorter. Like you say, he can say something so profound in the morning and by afternoon confusion. My LO doesn't verbalize the confusion as much as you say yours does. It's more of an agitation or a non interaction. He's good at ignoring people if he is unsure of what to say. For instance, yesterday afternoon our son and 12 year grand daughter were here to visit and help us do a bit of trimming on the bushes. He was good in the morning but by the time they went home and the little girl said "Bye Grandpa" and she wanted to give him a hug but he kind of just sat there with no interaction. So Cold! After they left, I said "let's take a nap" and he sat in his recliner and I tried to nap near him on the sofa. He fell asleep so hard, it scared me. His mouth dropped open and the coloring on his face was very pale. Very scary.

I felt so sorry for the 12 year old because she wanted to hug her Grandpa but he didn't react to her one way or the other. Well todays another day and so far he is alert and I will try to enjoy it.
Mary

Mary and Pat....I get the sense that we three are at the same "level" ..... if you want to create a "smaller" subset of caregivers .... you can email me at nbell7@sc.rr.com....... Carol I think we can give each other a support since we seem to be at the same level....what ever that is....

sad, but interesting remarks my heart goes out to all of you...

... i see a lot of all of you, in me too... sometimes good days and folks look at me like what are you concerned about?? he seems fine!!

we are in the what i call limbo stage, he knows enough, that hes sure nothing is wrong with him... and gets furious when the docs mention a day care...... but sadly, enough is wrong.. that i don't feel comfortable leaving him alone..

i feel sad for both of us, that friends are retiring and traveling and doing the things we waited to do... and now we cant. we finally have time to do and go... but he wakes up at 9 am and is normally asleep by 7pm.. and some days with a nap.. and times are harder for him if we dont keep the same schd. each day!! conversations have always been a bit limited, because he is quiet.. and i used to get my socialization at work or times with friends and now that has all changed... its quiet, its lonely.. and my tears can come in a flash... and recently his, as well..

i try and start conversations and by the third sentence he has no idea what we are talking about .. so our conversations are simple and easy and in some cases the same or repeats.. all day...

hes only 67 .....he cant drive, cant work.. and feels depressed. hes is starting to show lots of agitation and anger at times... i take him with me every where and we try and make games or fun at the grocery store or go for walks or down to the beach... i try to find things to do .. games, puzzles etc... but i can tell hes bored... he wants to work... he wants to drive... he doesn't understand why this is happening.. even with the docs explaining..

lewy is a horrible disease.. if its your mom, your dad, your family member.. but when there are only two of you, and its your spouse.. it feels extra rough, sometimes... especially when there is no one at home, that can give you a big hug at the end of the day and to listen and offer encouragement, for the following day!

this board has been the best in so many ways.. information, ideas for doctors, meds and complications.. good suggestions in handling changes etc... but as far as feeling you are not alone.. its fantastic...

and today, i needed that...

thank you..
cindi

cindi you are so eloquent in your feelings.....that is how I feel, you expressed my feelings too.....I care, and feel as you do...Carol

thank you carol..((()))
.
mary i meant to include hubbys face gets so grey also, when hes sleeping in the recliner... and occasionally thru out the day.. and it is very scary...
take care...
cindi

I wonder if the "grey" or paleness is due to a drop in BP? I remember my dad's face often being extremely pale and kind of grey-looking. Sending all of you a giant hug. You are traveling a very, very hard road so please take care of yourselves too. Lynn