Guest guest Posted June 23, 2001 Report Share Posted June 23, 2001 In a message dated 6/23/01 12:31:41 PM Central Daylight Time, mikk@... writes: << Does anyone else feel that the patient isn't aware of everything the caregiver is doing or going through? Lou used to acknowledge acts of kindness, notice things, etc. >> So sorry to see that the last few days have been such bad ones for you two, Mik! It's amazing the falls they can take without more serious injury. Bob seems to go through waves of awareness. Before the doubled Aricept kicked in I think he was much more self-centered. This past week there have been some really nice moments, with extra kisses and thanks for me bringing my youngest daughter into his life. Lots of fond memories for him (and her!) about him stepfathering her as a teenager when we were first married. He seems most of the time to be aware that being a caregiver can be stressful. The only thing he doesn't (or won't??) acknowledge is how lonely it's going to be for me if we are isolated from nearby family if/when he gets really bad. Maybe that's the time " disorientation " that goes with this disease? Considering the future isn't something he does well. Lou is " further along " than Bob, and maybe he really can't think of much other than himself anymore. Thinking of you - Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2001 Report Share Posted June 23, 2001 In a message dated 6/23/01 4:28:32 PM Central Daylight Time, MaiLiis@... writes: << I find the fluctuations very difficult. They are always unexpected and throw me for a loop. >> I know what you mean, Mai-Liis. The fluctuations are the hardest part of this thing, for me. I'm getting better at not being surprised, but it really is so lonely when he is out of it. Right now, the good times are a lot better than they were 6 months ago - and last longer. Thank you Aricept! Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2001 Report Share Posted June 23, 2001 Does anyone else feel that the patient isn't aware of everything the caregiver is doing or going through? Lou used to acknowledge acts of kindness, notice things, etc. Do you suppose he has gotten to the point that thinking about himself is the ONLY thing he can remember how to do? What terrible days with all the falls. You, as well as others on this site, amaze me with your calmness. I hope that someday I will be able to achieve this! Though my husband is at the beginning stages of LBD, he is definitely completely self-centered during his bad periods. I believe his confusion, anxiety, and fear does not allow focus on anything or anyone else. (I have only to remember how I am with a bad case of flu! :-) ) Still, very hard to take. We do still have days which are close enough to normal to almost fool me! During my husband's better days he is still very affectionate, thoughtful,helpful, active....and does a pretty good job of convincing me he has been misdiagnosed....and there's really nothing wrong. Then...bingo...I realize we are in the middle of a conversation...he has NO idea what it's about...but did a marvelous job at fooling me! It's at those times that I feel very lonely.I find the fluctuations very difficult. They are always unexpected and throw me for a loop. Mai-Liis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2001 Report Share Posted June 24, 2001 You have hit on the head just what I am asking for. Ask your questions, and then try to answer them. If you can't that is part of this book also. I would love to see this disease from the patient's point of view in writting also. The caregiver is often the last one acknowledged and the one most in need. So many things are so different with each different case. I do believe that the mind of the LBD patient so often turns inward just because it is something they can remember. Hospice has been working with Jack and does state that when they show him our picture he has on his dresser he may not say anything, but he gets a big smile and touches my picture. I really believe they know how important we are to them, even when they are totally incapable of voicing it. Hang in there and we are here for you too...... Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2001 Report Share Posted June 25, 2001 No you can't reason with LBD. Reason does not apply. > Can you reason with LBD? I Yes, they are all that fast. > can't get him to understand that if he's in a falling mode he must > ask for help to get around or stay put. He seems to do what pops > into his mind and takes off running. He goes at a fast shuffle. I think they can't put themselves in anyone else's shoes--that would require a level of abstraction that I think is destroyed by the disease. It looks like selfishness--quacks like selfishness and waddles like selfishness --but it isn't selfishness. They just can't imagine in the way required for empathy. > > Does anyone else feel that the patient isn't aware of everything the > caregiver is doing or going through? Lou used to acknowledge acts of > kindness, notice things, etc. > Do you suppose he has gotten to the point that thinking about himself > is the ONLY thing he can remember how to do? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2001 Report Share Posted June 25, 2001 In a message dated 6/24/01 6:33:53 PM Central Daylight Time, penenda@... writes: << I really believe they know how important we are to them, even when they are totally incapable of voicing it. >> I agree, Carol. Bob is still quite capable verbally, and every now and then tells me he doesn't know what he would do without me. While I appreciate it, it also makes me feel bad, because he was always so good at taking care of things. Nevertheless I am so glad to know that he knows . . . You know better than I what it is going to be like when he can no longer manage his appreciation. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2001 Report Share Posted June 28, 2001 >Does anyone else feel that the patient isn't aware of everything the >caregiver is doing or going through? Lou used to acknowledge acts of >kindness, notice things, etc. >Do you suppose he has gotten to the point that thinking about himself >is the ONLY thing he can remember how to do? I think this is very true. I've always loved to travel and had planned to go on yearly hiking trips in Spain and to visit relatives there. All those plans are finished for me. I've noticed that my husband does not ask me why I am not going back. He would have before. In fact he used to encourage me to go. He sees that I am making paintings of Spain; before he would have made the connection that I should go back to get more referance material. Now he is silent, pleasant, observing but not adding any of his own thoughts. Is his empathy slipping away? Its part of the lonliness of this disease: the loss of the supportive " other " . Imelda And Mai-Liis writes: Then...bingo...I realize we are in the middle of a conversation...he has NO idea what it's about...but did a marvelous job at fooling me! It's at those times that I feel very lonely. I find the fluctuations very difficult. They are always unexpected and throw me for a loop. Mai-Liis Mai-Liis, I have those same strangly connected conversations with Wil at night, while he is sleeping. He will suddenly start to talk in perfectly coherant sentances, usually about literary topics that used to interest him. He will ask me questions, wait for me to answer and respond to what I say. All in his sleep. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2001 Report Share Posted June 28, 2001 In a message dated 6/28/01 12:29:22 PM Central Daylight Time, imelda4@... writes: << He sees that I am making paintings of Spain; before he would have made the connection that I should go back to get more referance material. Now he is silent, pleasant, observing but not adding any of his own thoughts. Is his empathy slipping away? Its part of the lonliness of this disease: the loss of the supportive " other " . >> Yes, Imelda, I seem to experience more and more of this sort of thing. Today is our 17th wedding anniversary and while " HE " was the ftirst to say " Happy Anniversary " this morning (I had already alerted him to the fact that today was the day), it was me who saw to the day being itself. It is truly so lonely, despite their brief recollections that today is something special. Yes there is so much loneliness in this lifestyle. Which is why it is so especially nice to know all who are here. Cheryl Quote Link to comment Share on other sites More sharing options...
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