Earlier this week, when I arrived at the care center, I reminded Mom of who I am, as usual. But the disbelief on her face made me go further. I told her that I’m her Kathy – the same little girl she knew with the blond curls. Big mistake. You could see, on her face, her heart breaking. She sobbed for several minutes. I think she was seeing this gray haired woman in front of her saying that I was her child and, in making the connection, realized how many years she couldn’t remember.

So, I find myself wondering, as long as she is comfortable with me, is it really important for her to understand who I am? Or is it just me wanting her to understand? If remembering is painful, how important is remembering?

Tonya, Craig, your thoughts would be especially helpful on this. It’s so hard to know what Mom is thinking or how something affects her when she can’t communicate. And there’s so little information about what the late stage of LBD is like for the person who has LBD.

One good thing this did for me, though, was to confirm that Mom’s intelligence is still intact. If it weren’t, she wouldn’t have made the connection so quickly. Which reminds me to not talk around Mom, but to include her in the conversation.

Best wishes.

Kate

Good point about not talking around your LO, Kate. My mother is currently going through a significant decline but she is still an intelligent person, and in fact I think that is making the decline harder on her. She seems aware and is fighting it every inch of the way, which is so hard to watch.

I don't really see the point in telling your LO anything that is going to be upsetting, whether it is the fact that the mature woman before her is the person she remembers as her little girl, or the fact that a dear relative actually has been gone for many years. I read a list on the forum just recently that recommended not challenging or correcting our LO's beliefs or delusions. Seems to me that this falls into the same category, but of course all of this is going to depend on the degree of dementia the LO is experiencing. There are things I could have corrected a year and a half ago that my mother would never understand if I tried to correct her now.

Julianne

Kate,
I think your instincts are right -- it's OK if she doesn't remember you. That's more your need than hers. You might inform the care facility staff so that they can try to be supportive of this as well ("oh, did you have a nice visit with Kate today?").
Robin

This reminds me of two things I've read. When asked why he continues to go to the NH and have breakfast with his wife every morning when she can't remember who he is, the elderly gentleman replied, "Because I still remember who she is."

Or the elderly man whose daughter visited him daily in the NH: "I don't know who you are, but you certainly are a nice lady."

I don't know. You raise an excellent question, Kate. Maybe it is more important that our LOs feel surrounded by nice people they can trust, than for them to know exactly who each person is. How heartbreaking for you, though, Kate.

Kate….I don't know….I wouldn't want to suggest anything….because I don't know….

it is difficult to think about….but….my daughter will most likely face the same question….

how can there be a right or wrong answer?

how can we be given a heart….except without the right to use it?

can not a heart learn as you go?

you are trying….sounds like the right thing to me…

……….

something I brought up in another post….

I realize that I have less and less tolerance for anyone arguing with me….that must be one of my areas affected….

the point about who is it important to have the truth….it truth the important thing? or comfort?

I think to answer that…something must be recognized first….

one of us is sick….that invalidates all the rules for normal people…..

I think that is what is missed most often….I am sick…I am not normal anymore….I know you want me to be normal…I want to be normal…

you can't make me normal…..

the reason I bring this up….this is a big problem my wife had….

she never really recognized that I was sick…she wanted to argue with a normal person…I lost the ability to argue…

I can still discuss…somewhat…but not argue……

maybe one day I will lose the abiltity to discuss…troubling thought…

as things deterioated with my wife….she wanted me to comfort her more….while comforting me less….she wanted me to be more normal than her….

what a difficult job you have…..

this is what I communicated to my wife…am I fortunate to see that what I can see today….I won't tomorrow?

I know I am passing control to 'you'….for some….that control has already been passed….

my wife didn't want to accept the 'baton'…..I am sorry you have no choice….and no instruction book….

that word that Jeanne used….'trust'…..

I think 'trust' or not trust….

I get comfort thinking about who I can trust…..to do what needs to be done….

for me….

not to me….

Craig nailed it--what is more important, truth or comfort.

When I was 24/7 caretaker for my husband, he was in full capgras delusion--there were 3 of us ladies, none the real me. Sometimes we had names, sometimes not. Because I understood from this forum that capgras is "Lewy normal," instead of being devastating to me it was really a non-issue. The relationship was the same, albeit a Lewy one.

Since his placement, he always knows who I am and there is only one of me.

Sometimes something that sounds so terrible and fearful, isn't.

My husband often doesn't know who I am, either, but it doesn't really matter. And when we recently celebrated his birthday with close family present at the SNF, the fact that friendly people were there for him was more important than the sad fact that he didn't know who most of them were. That I alerted them to that possibility in my written invitations made their expectations realistic and I think all enjoyed the experience.

there is another part to this…

if you are calm…I feel comfort…

this used to be my job….providing comfort….

if you are stressed…I feel no comfort….

I am no longer internally confident in my abilities…

I can no longer depend on me…for the answer….

don't stress me to find the answer….don't punish me for providing the wrong answer….

comfort me...

Craig, maybe, maybe not.

Among the people in my local lbd caregivers support group, all of the LOs retained their recognition of people to the very end. Even the guy who thought he was governor of South Dakota and owned a car dealership (neither remotely part of his past) knew exactly who his daughter and son-in-law were, right up to his death a couple of months ago.

It might be an interesting concept to discuss with your daughter, but it is also something that may not come to pass.

Jeanne……I know….and I hope…

but….the way that I am dealing with this….is the only way I know how to deal with anything…

research….learn what the absolute worst can be….prepare for that if I am able….or accept that as a possibility….

and then go on like that isn't going to happen today….but….stay vigilant….


……….

I am encouraged by some of the common problems others have that I have no sign of ever experiencing…

we all have our unique flavor….

craig, you are so appreciated!!.. sharing your thoughts help us see so much more.. understanding more from your view point... i appreciate it sooo much..and im sure others do too...

my hubby is VERY quiet and in denial..i wish so much we could talk about what is happening to us... how our roles are changing, how our life is changing.. not to at all criticize , but to share what we are feeling.. how to help each other get thru this the best we can.. to make a difficult time, a tad bit easier... but it doesnt happened and it makes me terribly sad.. and i feel he is suffering alone too.. wondering, questioning, scared.. and it breaks my heart...

because he has ptsd.. he has always been shut down emotionally.. and ive just learned to deal with it and leaned to live around it.. but this one is a toughie trying to guess what is best...for both of us... so afraid im going to make a mistake!!

thank you for sharing and being who you are.. im learning so much from you~~
cindi

Kate,
I really don't see any need for your Mom to know who you are , if she is comfortable visiting with you.
I guess what you have think is right for your mom!

Caregivers generally need a lot of comforting. If we are lucky we find sources for it -- friends, family, support groups, even paid therapists. When we are caregiving a spouse, not only do we need a lot of comforting but our primary source of comfort is not able to play that role. Suddenly comforting is not a mutual task. It all goes one way. This is a terribly, terribly hard blow to absorb why at the say time taking on challenges beyond our former limited imagination.

Coy had his meltdown in early June ('03), was diagnosed in late July, and in August I was hospitalized as the result of misdiagnosed "anxiety" that turned out to be diabetes. I spent 3 days in ICU totally alone. Our kids were doing precisely what I wanted them to be doing -- figuring out how to care for Coy 24/7. They didn't know or didn't think about any of my friends to call. I really think that once I was in the hospital the likelyhood of dying was very remote, but the situation was life-threatening, and I remember thinking, during one pity party, that if I died there was no one in the entire building who knew me and would care on a personal level. They would have to look up next of kin on the admission sheet. And Coy, who had been my go-to comforter for 30 years, was lost to me forever in that role.

It was a very dramatic and very convincing lesson in how roles had changed forever in our household.

I am truly sorry, Craig, that your wife was not able to accept the changed roles. I hope that you are finding other sources of comfort. I hope your daughter can fill that role. And I hope your wife can find a source, too.

This is a very cruel disease for everyone whose lives it touches.

Hi Kate and all,

When I first read your post I thought, even if painful, I might feel comforted by being able to acknowledge the connection...but as I read on, Craig's posts and other caregivers, i realized that what I think now and how I might feel then may be quite different....I agree totally with Craig about the "trust"....and more than anything right now I feel I need calm, and to be able to trust the people (in this case just my husband right now) to care for me with compassion....I think it's my biggest fear - if I cannot communicate my needs, to have someone I _trust_ know what I might need....Forgive me because my memory isn't good, but I think it was Ger that suggested writing down some of these things now...it's a bit overwhelming but I will try....But everyday my husband tries to adjust to our reversing roles (he always worked, but I have nursed him through 5 major surgeries and an extended illness since we've been married and always "managed" everything) I grow in my trust that he will do a good job and he will take the best care of me that he is able....I am learning he may not do things the way I would and I have to learn to accept that and be grateful for any of his efforts.....I do believe this is harder on him than me in so many ways....

My Mother had a surgery many years back and it took her a few days to come out of the anesthesia....I stayed with her all day everyday until she did - she was unaware of anything really going on around her....I was sitting there one day while she was asleep and a Nun came into the room (it was a Catholic hospital) and she looked at me and said, "ahh...the gift of presence"......my heart was filled with joy - while I felt so helpless to help my mom recover, she made me realize I was helping by simply being there.....I will never forget that and my husband knows the story too....so I believe if the day comes when I do not know my husband or loved ones, or maybe even what is going on, if someone gives me the gift of presence I will know that! and be grateful for it! We will still be in here - as so many of you have assured me! And that means a great deal to me that so many of you know we will still be in here! My husband knows it too and says it a lot and it gives me great comfort....
Best wishes,
Tonya