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    OK, I know most people mean well, but why, oh why, do they ask, "Does he still know you?"

    Think about it. What a hurtful, stupid question and what kind of an answer does one give?

    How can we get people to stop, STOP, asking this asinine question? Is anyone else disturbed by this or do I need to go to anger management classes? The thing is, all of our kids have been asked this too and are hurt and annoyed. We have been polite. We have answered truthfully. But, really, this has to stop. It insensitive and there is no good answer. Or is there? Please tell me how you handle this.
    • CommentAuthorRona
    • CommentTimeAug 27th 2016
    I also get asked this all the time. Let it go you have bigger things to worry about. Many people do not understand they think it is that they do not remember people they do not realize it is also the whole loss of processing skills. It is an education process people I don't think are trying to be mean it is just all they know. So be up front tell them what it is like they need to know about this disease. we are all different this is just how I deal with it you have to find your way. They won't stop so Just don't get upset embrace it educate and move on.
    • CommentAuthorJazzy
    • CommentTimeAug 28th 2016
    Wonderful answer, Rona.
    My DH is now very happy, bubbly and sings all the time. He and sometimes I are often asked " why are you here in LTC? There is nothing wrong with you!
    He gets so upset and question why he has to live there.
    I have told him to just tell them " you have no idea about me" and walk away.
    I often tell them to get educated about dementia.
    First: they should never question a resident on why they are living there
    Second: it is none of their business.
    DH saw a t-shirt that " demented and proud" he asked me to find him one. Atleat he still has some of his humour
    I have encountered this also. The people that have asked me have not asked out of ill intent, rather concern with their limited knowledge about the disease. As Rona stated, most people only "know" about the memory component of Alzheimer's and are totally clueless about everything else that occurs or that there are even different types of dementia. For the average lay person, that is their only frame of reference and they don't live it everyday like we do, so they "think" the "not knowing you anymore" may be the worst phase before death. As Rona said, there are so many other things that our spouses "lose" along the way and, we know and understand that, but others just don't have any idea. They have not walked in our shoes. I have also found that many of his friends are in denial because of the vibrant, energetic, quick witted person that my husband was. Even when I would tell them on multiple occasions that he couldn't really talk and would NOT be able to have a conversation, most did not really accept it until they visited and saw for themselves. You could view that as their "education" in some way. And because no two people are exactly the same with how the disease affects them, many people just broad brush it with what they know, ie, memory loss. I find that the most difficult to deal with personally. People who have had a grandmother/grandfather, mom/dad, etc. with the disease and then think your spouse will be exactly like that. I find that is where many people are ignorant about the disease as they think everyone is the same. I try to not get upset about it and assume good intent. However, when someone tries to act like they are some expert and know everything because their grandmother/grandfather had it 20 years ago and they weren't even around them but a few weeks a year, that's when I get irritated and just walk away or limit my exposure to those kind of people.

    Marche, there's nothing wrong about the way you feel when people ask you that question. You feel how you feel, no one can deny you that. Because people don't have a clue about the disease, it just becomes one more thing that we have to deal with. It can be upsetting. But in the grand scheme of things, there are so many more things that are more important. I find that to maintain some sort of sanity I have to keep reminding myself that I cannot control other people and what they say or do (or not say or not do). The only thing in my control is how I respond to it or handle it. I have chosen not to let it get to me, or sometimes I let myself stew on it for a bit, vent to someone and then let it go. I liken it to being a duck and just letting the water roll off your back.
    • CommentAuthormyrtle*
    • CommentTimeAug 28th 2016 edited
    Yes, marche, people ask me this all the time. Even people whose family members have Alzheimer's (usually not advanced, though) ask it. When the person asking has a family member with Alzheimer's, the reason for the question is obvious. For others, I think they ask because (1) it gives them a standard against which they can judge the progress of the disease ("He's so far gone, he doesn't even know his own wife"); or (2) it allows them to wallow in sentimentality. ("The poor thing; after all she's done for him and he doesn't even recognize her anymore. Wah, wah wah".) I always give a version of this answer: "Yes, he does know me. I'm not sure if he knows exactly who I am but he definitely recognizes me and is always glad to see me." I usually say this cheerfully.

    I don't think the question is foolish but I agree that it's intrusive and insensitive. I would never ask it myself since I don't think it's polite to ask personal questions. (Instead, I ask open-ended questions that allow the other person to say as much or as little as they want, e.g., "How is he doing?" or, "Are there things he likes to do?" or if the person is in LTC, "What do you think about the care they give the residents there?"

    So does he still know me? Well, yes. He also knows the home health aide who I hire to visit him once a week as well as the nurses and aides who are regularly assigned to his unit. (If the person asking is someone who I think might have visited him once in a while, I'm tempted to say rudely, "Yes, he does know me and he'd know you, too, if you ever visited him." But I never do!)

    We say that all those with dementia are different. And I have to think that all caregivers are also different
    because for me, that is one question that I loved to answer and talk about. I would tell them all about How
    she liked ne but didn't know me and would ask me "What if George finds out about us? "

    I think that all of my family and friends wanted to help me through this and were trying their best to offer
    their support to a lonely caregiver. What could they say or talk about?... If they didn't ask questions, I would
    think they didn't care.
    • CommentAuthormyrtle*
    • CommentTimeAug 28th 2016 edited
    George, You are absolutely right. All dementia spouses are different. Marche, you have kids to talk to about your husband. I don't have children or anyone else (except the home health aide I hire to visit him once a week) to talk to about my husband. Maybe that's why I'm not offended by these questions. Sometimes I see boredom in people's eyes when I talk about how quickly he adjusted and how well he is cared for -- they really didn't want to hear that part -- but having asked the original question, they are stuck with listening to me for a while.
    It was a tipping point; I think I am an understanding, tolerant person, but . . . this seems to push buttons in our family.

    Even physician friends, who really ought to know better, ask this.

    I like your response, myrtle! Remember when Ann Landers advised responses like: "Why would you ask a question like that?"

    Nevertheless, I suppose I'm going to have to chill a bit. You know, flexibility, adaptability, problem solving, and thick skin. That's us.
    • CommentAuthorxox
    • CommentTimeAug 28th 2016
    The last time I had this problem is when my wife was in the hospital and she reported that a nurse or doctor said she shouldn't be living in her ALF (her ALF sends patients needing care to this hospital so the staff are familiar with it). I realize that my wife may have misreported what was said (and thankfully dropped it) but I could see it happening. I was satisfied that the nurse brining her down to discharge her saw her claim to have seen our son at the hospital. This was a year ago, I don't think this same comment would be made by staff now. I will add that the emergency room staff at this hospital has always provided great care of her, especially when the transport to take her back to the ALF was 4 hours late.

    My wife doesn't get many visitors, but before people visit I try to update them on her health and emphasize that her memory isn't that bad, that her problems show up in different ways.
    • CommentAuthorbhv*
    • CommentTimeAug 29th 2016
    This kind of thing actually led to some of my favorite memories of my MIL. The nursing home hired a new aide who, for some reason, thought MIL was getting better. She kept asking MIL who I was. MIL finally got frustrated and told her "This is my friend! And that's all there is to it!" And then gave her a "rasberry". It was priceless.
    Frequently MILs husband would ask what his name was. She never answered that. He would get up in frustration and go to the bathroom or for a little walk. She would keep asking, "Where's Roy?" The whole time he was gone.
    • CommentTimeAug 29th 2016 edited
    “I find that to maintain some sort of sanity I have to keep reminding myself that I cannot control other people and what they say or do (or not say or not do). The only thing in my control is how I respond to it or handle it. I have chosen not to let it get to me, or sometimes I let myself stew on it for a bit, vent to someone and then let it go. I liken it to being a duck and just letting the water roll off your back.”

    Sass,I like what you wrote, and I’m going to try to apply it to my own life. Here’s my vent, and then I’ll let it go.
    At the moment, I’ve got almost four weeks of garbage piled up in the lane because the city garbage trucks either don’t appear, or roll merrily by. Sometimes I’m the only one on the lane who is missed. Other times they miss the whole side of my lane. Phone calls to the city are met with polite bafflegab. Emails from those in charge supply me with a reference number.
    Our Worship the Mayor, who looks like Superman, is big on environment and has contributed to our city’s welfare by constructing many bike lanes. This has the added benefit of keeping pedestrians nimble as they make attempts to cross the street. The finger from the cyclists adds a certain piquancy to the exchange of greetings.
    Not to worry. The traffic-slowing project currently being built on one of the city’s major bridges is a net designed to prevent suicides.
    • CommentAuthorLindylou*
    • CommentTimeAug 29th 2016
    Last night as we curled up to go to sleep, my partner said, out of the blue, “I love you like a daughter”. I murmured back ‘things change’. Does she know still know me? Sometimes I am her mother, sometimes her sister, sometimes her grandmother. Once in a while I am her son. Last night I was the daughter she never had. Does she still know me? This I know: She knows she loves me.

    If someone should ask me the question, I will say, “She knows she loves me”. I know this is true. I know that this may change one day.

    But sometimes I think I don’t love this creature who wanders constantly around deconstructing our home, who needs me to help her in the bathroom, who takes the left foot out of her slacks as I attempt to place the right leg into them, who demands my constant attention. I remember and love the memories of the person she used to be: the one who gave her heart to others in her job, and to her family; the one who used to laugh with me and dance with me. I love the memories of the person she used to be. So in my case I must transfer the feeling “love” into the verb “love”. The feelings are gone, but the kindness and smiles and gentleness she receives from me is “love” as it has to be, and all it can be.
    • CommentAuthorbhv*
    • CommentTimeAug 29th 2016
    Omygosh Lindylou, that is the very thing I have been struggling with. I keep thinking it must be love to stay here and do this while being cursed at about half the time. DH is not aware he has the problem. He thinks I am completely nuts. It doesn't feel like " love" at all. But I believe he is happier here. I don't think he would be happy in a memory care unit at all. I can still get away now and then. Time will come soon when I will have to hire someone to help here. There is no one else to do this. So since I can't see myself walking away, I guess someone might call that love. But, like you, " The feelings are gone, but the kindness and smiles and gentleness (he) receives from me is "love" as it has to be, and all it can be."
    • CommentAuthorxox
    • CommentTimeAug 29th 2016
    bhv, that aide does not know how to work with people with dementia. You do not pepper someone with memory problems with questions. They can't answer and it frustrates them.
    • CommentTimeAug 29th 2016
    bhv, loved your stories about your MIL!
    • CommentAuthorMim
    • CommentTimeAug 29th 2016 edited
    Sass, your first few sentences say it all. That's really the only frame of reference they have...I can't hold it against them. It can be annoying & hurtful, but I just try my best to be as gracious as possible (while picturing holding their heads under water!!!). I'm just kidding of course on that last bit. :) Hmmm....????
    When people ask me if he still knows me I just tell them his heart remembers what his brain has forgotten. His eyes say it all and that is good enough for me.
    Oh, Marilynn, that is the best answer. What a gem - may we all use it?
    • CommentAuthorbhv*
    • CommentTimeAug 30th 2016
    Thanks mary75. She was special. FIL would think we were mad at each other cause we would sit together for hours sometimes with nothing said. At the nursing home we would sit holding hands with our foreheads touching sometimes for quite awhile. Sometimes just sitting like that. Sometimes I would just describe all the birds and flowers we saw on the ride there. Then she would sit up straight and just smile while gazing into my eyes. My Mom died at only 60, so I really lucked out with a MIL who was also a friend.
    Like Marilyn said, the heart remembers.
    • CommentAuthorRSA*
    • CommentTimeAug 30th 2016
    @Lindylou: "But sometimes I think I don’t love this creature..."

    What you've written is touching and very well put. I struggle with the same thoughts myself. My wife and I are strangers today, in a real sense: she doesn't know me in the way she used to (her dementia is so severe she may not know me at all) , and it's hard to say that I know her as she is now. It might be a little bit like meeting someone you were close friends with decades ago but haven't seen since. They've changed dramatically, and your memories aren't a reliable guide to understanding your friend now. It's not that way for every spouse, but this is how it feels to me.

    What you've written about the verb "love", with the kindness and all the actions, reminds me of Kant, writing about the biblical command to love one's neighbor. My rough understanding is this: Are you kind and gentle and in general "beneficent" from a sense of duty rather than love? Kant saw that as carrying moral weight, because your actions arise from your will rather than from your feelings. Kant wasn't big on love as a moral motivation, and I don't know how much I agree with all of his philosophy, but I do think he has a useful insight there. Being loving toward a person because it's the right thing to do, even the feelings are ambiguous, is good.
    • CommentAuthorMim
    • CommentTimeAug 30th 2016 edited
    Lindylou, you have much wisdom & insight. Love as a verb...I have heard that before & you're right. Even if the feelings are not what they used to be, we still make the choice to do the right thing.

    Love as it has to be....
    Marilyn, I used your answer. I said, " While his mind will no longer let him tell me, when I look into his eyes I see it in his heart."

    Thank you so much for helping me find the right words for the right answer.
    I'm glad my answer was a heip to you marche. This disease has robbed them of so much but the love we share is still there. The heart holds many trapped memories. Blessings to you!