I have to dress her each morning, so I switched from her usual undies to super absorbent Depends one morning and called them her "undies." Down on my knees, I did my usual ritual of "put your foot in your undies," "put your other foot in your undies." She never noticed the difference.
I am so glad that I didn't have a struggle with that life style change.
I also put a disposable 30x36 inch absorbent pad between her and the sheet at night. What little the Depends miss, the pad catches, so no more wet spots on the bed.
About the "disappearing conversation". With John and I none exists any longer. He can't remember what I just said, let alone HEAR me any more. When I'm with anyone, I talk and talk and talk like I've never done before, because I'm alone so much and guess I just have so much to say. If I go to see John, it's just getting too exhausting to do all the talking. Plus, I just got tired of being told to "shut up" by him. What's the point? Take a magazine to read. No thanks.
I also tend to talk talk talk when around other people. I used to be able to figure out what my husband was trying to tell me but now I usually just nod, agree or say I don't remember. Has anyone had any experience with the "sundowner" effect? My husband gets very combative about that time of day and nothing will calm him. I so miss our conversations, even his corny jokes. I even miss his obsession with the NBA. I always tell him that I am now the memory keeper. What would i do if i had all of him back for just one day...
It is so hard to try to communicate with someone that can't find the words for the simplest question. It used tobe my dh asking the questions but most of the time now it is me, just trying to figure out what he is trying to say. It is so sad to watch him try to find the words and then realize he can't find them. Most of the time he just gives up. When I see that it is dawning on him and making him sad, I try to help him out more. A lot of the time we just wind up laughting at each other.
When my dh ask what is wrong with him I tell him he has "memory pause". He asked me if that was like my menopause only aches and pains with his brain, I said yes that is it. Now he tells everyone he has memory pause when he can't think of the right words to say. This makes him feel better.
I have "memory pause" quite often!! My doc says it's just stress. I don't want any other answer! I've enrolled in school (full time in the Fall 2010) and I HOPE that my new socialization and exposure to the world of "youth" at school and on-line will help me fight my "senior moments". (I was wounded to read that folks in my agegroup are indeed considered "senior citizens"). Wierd feeling. I feel 30 something lately. (except when I look in the mirror...vanity)
Patty, I am only 44, so I feel your pain. I am working with a GREAT eldercare attorney right now to preserve as much as I can and not have to spend them on a NH. I want to have money for ME to survive now and later. There are ways to do that!!
I've always thought Alz is the loneliest disease; even when there is someone with you all the time it is like you are alone. I agree with Iggy, when you can't carry on a conversation it is hard to be intimate with someone. However, on the flip side, the ONLY alone time I get is my 2 hour commute two days a week to work. I savor those "alone moments" too...
It's also funny how as long as a person talks like they know what they are talking about - people assume they do. People with ask my DH something and he'll answer it with conviction; so they assume he knows what he is saying. Like they will say "where did you go on vacation?" and he will say "New York" when we went to San Diego. But they don't know that!
Yeah, I know what you mean. Because my husband was a successful physician at one time (and everyone still calls him Dr. Canton), the nursing staff at the nursing home assumes he understands all the medical mumbo-jumbo they "confer" with him about concerning his health. *sigh* I don't think they get it. About conversation, ours usually ends after about 15 minutes with John making a statement like, "I've heard all this before" or, "Jennifer, shut up". (not just the disease....this is JOHN) I've even tried just reading to him....bible, his past favorite authors, even tried getting him books on CD. He hits at me when I try to put the ear buds in his ears. I gave up and stay away. That's what has made my spirits brighter, actually.
Today has been a really bad one here. DH feels all I have done is chew him out. I have been on edge as my allergies are driving me mad. Add to that just getting a point across has been nearly impossible...no it has been impossible all day long from repeating my schedule to his doctor appointment to the flat tire I discovered on my car in the garage...then I find this thread about conversation and there are lots of ins and outs to this. Come to think of it, we don't really "talk" about much of anything now of any consequence. He will call me over to show me the prices of like items in the grocery ads, or he might be reading a book and call me over to share something about say Billy the Kid..while I m trying to get house work done. We used to talk about things in the news, local or national..That is pretty much not happening at all now. Yep like so many of you, our loved one is physically here some in pretty good shape other not but the sense of being alone is deep..it must be for them too in a different way. I hate this disease..
I hate this disease, too! We have conversations about the grocery ads as well. Mine actually reads the ads to me as I try to read the morning paper at breakfast! It's the only time in the day I can sit down and read it. If I tell him nicely, "I'll read the ads later," he gets angry, gives me "that face" and walks out of the room. We do discuss some of the news, but I long for the days when I could read the newspaper in quiet. Guess I shouldn't say that, that's going to happen soon enough.....
My Sharon has stopped talking almost entirely. She tries to communicate now and then but it seldom makes any sense. We consider ourselves lucky when we guess what she wants correctly. There are those moments of semi-clarity that pop up from time to time but the trend has been more toward her thinking that the voices on the TV are directed at her. She even thinks I am talking to her when I tell the dog to go lie down. I do so miss the romance of sweet little secrets and shared jokes. I miss every thing that I loved about her which was every single thing.
My husband is nowhere near as far along as Sharon, but the little secrets and shared jokes are long gone. He doesn't remember any of them. It leaves such a void in your life when shared memories go. I'm only just starting to experience that, and it is quite a shock. And it hurts.
My husband still knows my name but everytime he says my name, it hurts a little bit because before the FTD he rarely called me by my name when we were alone. He always used the nickname he had made up for me when we first got married. I know it's a small thing, but it's just one more of the little changes that hurt. He used to make me laugh even when I was mad at him. No jokes or shared memories here anymore either. I didn't even mention our 31st anniversary yesterday to him because it wouldn't have made a difference. We used to talk about everything--now it's nothing.
Today out of the blue, G said he knows he has failed in the last six months...that's the most conversation we've had in a while! As soon as we get home from whereever, he goes directly to the living room to lay down..I ask why not the family room with me and our pup..he's bored to death...somehow he likes to be bored in the living room . Who knows!
This is my first entry even though I've been reading most of the exchanges for more than a year. The comments are especially helpful after a very frustrating day with my wife. She's now going into the 4th year since diagnosis, and the last few months have revealed a greater regression. An exchange of ideas is not possible, but basically her attitude is good. Amazingly, she still sings in a chorus and does that well. The doctor says this is a part of the brain that is affected in later stages. I always expect a call from the director to pick her up, but he never calls, and others say she sings her heart out. But I now do all the cooking, cleaning, assisting with her dressing, bathing, etc. I can never quite figure out what stage she's in because some things apply to one stage and other things fit another stage. Anyone else find this to be true? By the way, we've lived through AD before with her mother, same age as my wife.
Welcome, George. Glad you are here and sorry you need to be. Maybe Gourdchipper* will be along to say "hi" one of these days. His wife died last year. I remember she loved to sing also and was able to do so even into the later stages, I believe. Don't forget to take good care of yourself. Sounds like you are doing a good job caring for your DW.
George, welcome aboard our life raft. It seems that few AD spice fit neatly into a stage. What you describe is not at all uncommon. If you're inclined, tell us a little more about you and your wife.
Welcome to posting, George. Our journey sounds much the same as yours -- my DW was officially diagnosed in 2002, and things progressed on a gentle slope until late 2007 when the slope steepened, and then even more so in mid 2008 -- by which point she was needing assistance with most aspects of daily living, although never complaining or exhibiting any negative behaviors. And her love of singing, and her ability to harmonize beautifully, never left her up until the very end of her life six months ago -- it was the one thing that really continued to engage her. We were very fortunate in having our unmarried son move back in with us and help out for the last year of my DW's life so we were able to keep her here at home -- and the son is still here, keeping his eye on me until he's satisfied that I've got things under control -- which I have.
Gourdchipper... I know that the progression of AD is different for each person afflicted with it. My wife is teetering between stage 6 and 7 now. Some days she is remarkably engaged, other days she seems unreachable. Even on her good days, attention wise, she is unsteady (needs to be walked because she has fallen and I am afraid she will again) and incapable of taking care of basic things like teeth brushing, bathing, toileting or even feeding herself (unless it is a sandwich she can pick up). I have no idea how far off the end is for my wife. If it isn't too much to ask, is htere anything I should be aware of? If this is too personal I understand. I just want to be prepared.
Thunder, I'm heading out the door to take my second best sweetheart, Joyce, out for lunch and a movie matinee, but when I get back tonight I'll try to answer your questions. Nothing is too personal on this message board, so ask anything you want and we'll do our dead level best to provide helpful answers.
OK, Thunder, I'm back after an enjoyable afternoon and evening.
Probably the best way to answer your questions would be to let you read a log I compiled of the progression of my wife's late onset AD over a span of about ten years -- compiled from emails I had sent to relatives and friends over the years, as well as a few posts to this mail list. If you'll email me off line, I'll be glad to send you the log as a .doc file -- my email address is displayed in my profile, which you can reach by just clicking on Gourdchipper* above. You might also be interested in another file I've compiled that deals mostly with some of the emotions I've experienced over the past two or three years as a caregiver. The same offer to anyone else who might be interested in reading these files -- just drop me an email.
Thank you so much for ttt ing this subject. I needed this very badly. I wish that things were different but they aren't and they aren't going to get better either. I am trying hard to keep memories alive by talking to him about them. He doesn't remember much until we get to a certain point and then he has this remembering look on his face so I keep talking and I may even get a response. Usually he changes the subject to things like "What are you going to be doing tomorrow, I can't remember?" I just told him 2 or 3 times already. Then the magic of the moment is gone until the next time I feel brave enough to try again. The most comforting thing is knowing I have others I can write to that know exactly what I am talking about.
We don't really have any meaningful conversations. When I think of something I then think DH won't remember and I have to go into minute details that are irritiating to both of us because most times he still won't remember so I keep quiet. DH can still speak clearly so it's not like he is having speech problems but a lot of times he can't think of the words and I have to try and figure out what he means. All in all a lot of bother for not much joy!
Since Sharon is pretty much non-communicative anyway I carry on the conversation one-sided. If she happens to be in a window of engagement she will smile or frown at me... if she is disconnected she simply ignores me. I babble on either way. Sometimes it amuses her.
Siem was always the talker at our house. It used to bug me that he always wanted to talk when I was reading or writing or whatever. He always had ideas, plans, ambitions to talk about. Well, no longer! Things are quiet now. Like Jean, I often find it's just too much trouble to try to communicate. Today, however he did remember that yesterday we boarded the cruise ship SS Rotterdam (it has found a permanent berth in the harbor here and is being used as a hotel cum conference center) and had coffee and apple cake in the restaurant on board. Just now he was putting pictures in his album (a very thoughful Christmas present from DS and DIL; they filled it half full of pictures of the extended family, leaving half for him to fill himself) and so "we" talked about some of the pictures. He smiles and nods, says very little. But I think it helps him to remember people and places.
There is no conversation here. If I ask my husband anything the only answer I get is "okay", "I'm sorry" or if it's something he doesn't want to do it's "nope". He has repetitive phrases he says such as "yeah baby, yeah baby" which he usually will say while he is pacing around the house. He looks at all the pictures on the wall of family everyday like he has never seen them before and he listens to his musical birthday card from his last birthday and a stuffed leprachaun that plays "when Irish eyes are smiling" several times a day.
When he does speak to me, it's to ask questions about things he wants--what's for dinner, when are we going to the mall, are you going to wash clothes or to tell me what time he is going to do something--he is very obsessed with doing things at a certain time.
This is such a sad thread. My DH is not as far along as some are here but still the conversations are not the same either. He has his language skills intact. What is missing is the remembering part. Yesterday it was like he was all back to normal and I started to second guess myself about his situation...he remembered I was going to Mass at 5 then coming home to go out to dinner. While getting ready to pay the bill, he said if we don't leave a good tip the waitress will yell "SECURITY!" like that waitress in the tv ad. What a great day all day. Then today he remembered Mass on tv but then said, isn't it tonight we are supposed to go out to dinner? I find myself wondering about all the going out to lunch and dinner changes...before he would enjoy it once in a while saying our cooking is just as good or better (true) and less costly. Now he wants to go out just about every day and I don't understand this at all. He does talk more then and seems more normal somehow. And important conversations about say something like taxes or scheduling a trip etc becomes very hard as I feel so often like I am talking in Greek.
You're so right, Mimi, it is a sad thread. It makes me realize maybe I don't have it so bad right now. We are able to hold conversations, but they are mostly related to things he's interested in, talking about people he knew long ago, etc. He, of course, wants to know what's going on with our kids, but when I do tell him things, he forgets I told him and then asks the same questions again and again. Sometimes I find it irritating, but at least we can talk to each other. But, Deb above, to not EVER have conversation, you must feel very lonely.
It does get lonely not being able to discuss anything with my husband. We always did everything together and talked about everything. I get my conversation now by talking to my mom on the phone everyday. I have no close friends in my area anymore as they have all moved to warmer climates to enjoy their retirements but I do talk to them periodically. I used to be very shy but now I'll talk to anyone who will listen to me :) I just do what I have to do. He is still able to take care of his personal needs, so I'm grateful for that.
It's increasingly frustrating that DH is having so much trouble understanding what I say to him. It seems to go in one ear and out the other. If I want to make sure he's understood an instruction, such as "When you come out of the restroom, wait right here for me" I have to be sure to elicit an explicit response and even then he may not have understood (or immediately forgot). I ask him to do things and it simply does not penetrate -- not a question of ill will, as he's usually quite willing to do whatever he understands, unless the task is too hard for him (as it increasingly is). Making our apple crisp this morning he split the apple into eight wedges with his splitter but had forgotten that he had to cut the wedges into smaller pieces. I told him, and he did nothing. Explained again, no response. Finally I took a piece and demonstrated, and then he went ahead and did it all (really tiny pieces,and it took forever, but that's OK). Wow, he is really going backwards. My two-year old granddaughter has understood everything that is said to her from about 19 months old. She is also much better at doing jigsaw puzzles than dh is.
The conversation and BFF blogs.....This week I had to bury my first ever BFF: my mother. As we traveled the 5 hours to get to my parents house.....no conversation. Not able to talk or express any feelings because he just isn't able to "get it" anymore. Made me miss my BFF even more!