Always on my mind [14]Comments on:

By: danielle

danielle — Sun, 13 Jan 2008 06:18:48 +0000

in my personal opinion…i think its kinda wierd for our family to act wierd aroud pappa…he is the same pappa we have always known and love…it kinda makes me sad to see my own family members to act like that….all we have to do is to tell him whats really going on or whats there…not act wierd..i no that we all are dealing with this and its really tough on our whole family…i have always been pappas little girl always doing things with him when i was younger..and now i have to deal with this and i no that our family will hopefully change

By: David

David — Fri, 11 Jan 2008 14:26:15 +0000

I am a physician suffering from Lewy Body Disease. I understand how uncomfortable people are when they are around me. But, PLEASE, we as victims of this disease still have feelings, dignity and a need to have respect. Even during my worst moments, I still have a vague sense of how people are treating me. Whenever, they retreat and “change their behavior” toward me, it decreases my self-esteem and self-worth. Please, please, please. Treat us with respect and dignity. We may see things, mutter unintelligible sentences, don’t know where we are and have trouble remembering, but we are still human. Just treat us like everyone else. If your Grandfather had diabetes, heart disease, hypertension, etc., would everyone change their behaviors around him? I doubt it.

Thanks…………David

By: sizzle

sizzle — Fri, 11 Jan 2008 03:39:26 +0000

i’m so sorry your grandfather is suffering from LBD. that must be so difficult as someone who loves him to watch “him” come and go. my grandmother had parkinsons and that was really hard on all of us.

it’s so clear how much you care. the best you can do is give your love as much as you can and appreciate the lucid times. can you maybe call him more often? would that help you feel better?

big hug,
sizz

By: Lisa

Lisa — Fri, 11 Jan 2008 03:35:00 +0000

I think any time you spend with your grandparents is valuable time, no matter how little. I never knew either of my grandfathers, and one of my grandmothers died before dementia took its grip (cancer took her instead), but I lived through the dementia decay with my other grandmother. It was hard. Just take baby steps and you’ll make it through.

By: kilax

kilax — Thu, 10 Jan 2008 23:06:09 +0000

Wow. This is a lot of comments to process. I will be back with responses later

By: Felicia

Felicia — Thu, 10 Jan 2008 19:40:20 +0000

Well I would love say I am perfect example of what you should do but I am the exact opposite. I have always been told that out of our huge (and believe me my family likes to multiply), I am the person that is most like my grandmother. I am clearly her favorite and I love her to pieces. In 1999, she started having health issues. She lives close enough that I visited regularly. She was pretty much herself until about 2004, then we had to put her in a nursing home (still visited as many times as could to see her) and then 2 years ago was diagnosed with dementia. This is pretty much where my visits declined. She has gone down hill pretty rapidly and I have to admit I probably haven’t visited in 5 months. I used to go every 3 months. I don’t want to remember her like she is now and she hasn’t known who I was anytime in the last 2 years I have visited. The doctors also point out every time we visit that we upset her routine and to remember to keep her to it as much as possible. I understand this actually, it makes her mind more active and causes her much less frustration. She remembers my dad (mostly because he and my grandfather are pretty much mirror images of each other and she misses my grandfather terribly) but pretty much is having that day to day issue of remembering things like night/day, eating/not eating, brushing her hair. I hate seeing her like that and sometimes think my visits do more harm than good because she gets frustrated at not being able to remember who I am. I have even gotten to where I don’t remind her who I am and just act like one of the nurses to help her with her routine that day. I am not sure if that makes me a bad granddaughter or not but I want to remember her as the stubborn, fiesty, southern woman that she was not the sick person that she is now. She wouldn’t want to be remembered that way either. So I guess I am saying I understand what you are going through and I don’t think there is a right/wrong way to approach it or act while you are there. The best you can be is all I think they would ever ask

By: ajooja

ajooja — Thu, 10 Jan 2008 18:31:13 +0000

You’re doing a great job already.

My mom is in her 70s and I’ve noticed her “getting old” the past couple of years. It’s difficult not to treat her differently. I don’t see her as often as I used to and a lot of it is simply because she just latches on and won’t let go when I call her. It’s tough to say, but she’s just a lot more annoying than she used to be. It’s difficult to make time for someone who drains you.

Of course, I balance that with an intense admiration, love, and appreciation for my mother, so I put up with it. But it’s easy to understand how maintaining such relationships gets more difficult as the person ages or becomes physically/mentally impaired.

By: Courtney Ilax

Courtney Ilax — Thu, 10 Jan 2008 16:48:36 +0000

Kim,
I think we all feel a little of what your dealing with. Not knowing what to say or what to do. Grandpa is always going to be grandpa we know him for him. We well always remember the funny smart and clever grandpa . We all just have to talk to him as if he was the same. If he doesn’t respond right away go on with your convo. He is always listening and trying to understand. I know grandpa was great when you and steven came down. I had like a hour chat with him about whats going on and everything else. It was nice but that doesn’t mean when I come back over next time that he won’t call me Kim.. Which by the way he loves to do . So your always on his mind. We just have to make him feel as if he is no diffrent . Yes he may say some pretty far out things. We know what’s happening when he says them. Kim what I am trying to say is we all are in the same bracket as you… I see grandpa and see what this lewy body is doing to him and and it scares me and Nick a lot. .. I am here through email and phone if you ever need anyone to talk to you . Love you tons Kim

By: Jenniy

Jenniy — Thu, 10 Jan 2008 16:41:21 +0000

My great Grandma developed a bit of dementia shortly before she died. It became obviously only a month or two before, so it didn’t affect her too badly for long, which was good. At first it was sad, because it made talking to her sometimes difficult, often she didn’t know who I was (she would get me confused with my cousin).

But then towards the end of her life, it actually was kind of nice. I would go and visit her, she was so frail and bed ridden, but she would tell me how tired she was because she had spent the whole day cleaning her apartment and she was excited because her friends were visiting the next day, and she actually seemed happy living in her own world.

It was funny, though, because one minute she would tell me that she had just finished washing her ceiling (leave it to my Grandma to was her ceiling!!), and the next ask me how much trip to Wyoming was last week, which was something that I really had done, so she was aware of real life also.

I don’t have any advice other than just to try to visit as much as you can. If it feels awkward with other people, you mentioned it’s tense, maybe go by yourself? I’m so sorry to hear about your Grandpa

By: Hilly

Hilly — Thu, 10 Jan 2008 16:40:55 +0000

I think the best thing to realize is that the person you love is still in there and is probably more uncomfortable and sad than you are. If you keep yourself in his head, even though it is hard to do, then compassion will take over your fears (which are natural by the way).

When my Grandma was dying, I pushed past that total discomfort to make her feel better then went and cried in the bathroom a lot!