Viva, we lost my MIL to Lewy Body Dementia in May, and it was definitely a rough ride. It's hard that you only have the phone, because what often happens is that the phone becomes particularly confusing for people with dementia. Without the additional visual cues of having the person they're talking to physically present, they can lose the thread of who's on the phone and what they were talking about. At first they may be embarrassed by this and want to end the conversation quickly -- try not to take this personally if it happens. Keeping sentences short and simple and avoiding questions can help. (Questions can be especially upsetting to people with dementia because they arouse anxiety: they know they're supposed to answer but can't find the words or they forgot the content of the question.)

It's definitely an odd sort of grieving because the person is still there, but not there. Sending good thoughts your way -- you're not alone, and it's always hard.

Thanks, Aziraphale, for sharing your story. That seems painful in its own difficult way.

April, I appreciate your thoughts as well. You are right that the phone calls are necessarily short. They are really only -- what are you doing right now? how are you feeling right now? -- and there have been many times when I am not sure she knows she is speaking to me. But even still, it is a comfort to hear her voice, and when she is talking to me directly it is pretty wonderful. I spoke to her last night for about 5 minutes and intend to call her regularly no matter how difficult it feels. This forum has been an incredible support in encouraging me to make that commitment to myself.

I have read that sometimes a person with dementia will recognize a person by their voice more easily than by looking at them, because our voice tends to stay pretty much the same, whereas our physical appearance can change (as we get older, etc.) I don't know if this is true, but it's interesting.

I was told never to say "Remember when..." or "You used to..." because they usually can't remember and struggling to figure it out can make them feel really upset. I was told to try to stay in the present as much as possible. It makes for some pretty boring conversations, to an outsider, but dad can't remember five minutes ago sometimes, so to him, it's all new! We talk A LOT about the weather. I'm almost glad when there's some big weather event! He repeats himself a lot. It's a lesson in patience and staying in the present, that's for sure.

viva, Hugs and warm wishes to you to move forward through such a challenging time.

I wonder, can you have your sister frame a photo of you (closer up is better) and each time you call, make sure your sister or someone has the photo available for her to see? Just thinking how important those visual cues are as someone said.

Also, can you look into B-12 Methylcobalamin supplementation for her? It's supposed to be quite beneficial as is D3.

And I totally agree with trying to keep the conversation "happy" for your mom, not trying to check to see if she remembers something (as hard as that must be). I've read that Dementia is like aging backwards and the adult children can often cope better if they think of it like this.

Tarzy, I remember having lots of conversations about the weather too! I miss those calls now. I actually still have my mom's number on my cell phone "favorites" list, and she died in April 2011. Just can't bring myself to erase it. (I don't call it, though, ha!)