My daughter and I have decided we will go to a movie tonight.
Usually, husband--if asked--will want to do whatever I'm doing. So I ask. I get a blank look. I try again. "Olivia...and...I...are...going...to the movie...Mamma Mia...tonight. Do...YOU...want...to go?"
He does. But, as usual, I feel like I must be some kind of weirdo mocker to be speaking to him this way. Slowly and enunciating every syllable. It doesn't feel at all natural to me, and to some extent, I feel as if I am exaggerating my speech to the point that it must be mean or denigrating to him that I'm speaking that way. Especially when I witness the wide-eyed blank gaze I get in return, prompting me to tack on a little smile and nod. The little smile and nod also feel very fake to me, but I tack them on anyway.
He says, yes, he wants to go and that, right now, he is walking to Dawson's (a local beer/wine store) to buy wine. Ok. It is very good, I think, that he has found that he enjoys these short walking junkets and can accomplish them safely.
I just did it again. He is back, and I used the word "buveur." It required quite a bit of clear, simple speech to explain the meaning. Again I get the round-eyed acknowledgment. Again I smile and nod, adding a small, reassuring "mmm-hmmm."
I feel like a fraud, I really do sometimes. Because it's such a put-on demeanor, designed to be therapeutic, friendly, and reassuring, but it bears no resemblance to the fun and quippy relationship I had with this man a few years ago.
So sometimes I wonder if he perceives the fakeness. Blech.
Sometimes he asks me how I am. "How are YOU?" he says. I always smile and say "I'm good!" Because the truth would be impossibly complex to convey.
Oh, I can SO understand what you are saying. My mother was an actress in the museum here all her life, and now I feel like I am the actress. Everything is hunky dorey. (Not!) I just put on that smile & don't initiate a conversation past the cat or the weather. I used to joke when I thought he wasn't hearing me, and sort of fake sign language. I'm not ashamed, because I hadn't a clue.
I have been overwhelmingly busy this weekend, so only just now saw this post. I follow my own advice (see left side topic on home page of Memory Techniques and Communication strategies) and have to get his attention first. I say, " I have something to tell you. Look at me. Are you listening? Okay." Then I tell him one sentence at a time, and then ask if he understood. I hate it because I think it is demeaning to him, but if I don't do it that way, he doesn't pay attention and doesn't "get" a word I say.
Lots of times, if I am explaining something, I draw diagrams and pictures, to go along with what I am saying, because he is a visual learner, and his visual comprehension is much better than his verbal comprehension.
I really hate doing this to him, but there seems to be little choice.
My husband has been guiding me in this. For example, he will be watching TV. I try to talk to him, get right in front of him, make eye contact, speak slowly and in short, simple sentences -- something really simple, so I don't think we need to turn the TV off. He promptly picks up the remote, turns the TV off. HE makes it clear that he cannot bear the slightest distraction. I say exactly what I did before, but this time, we manage to communicate because he has, yet again, shown me that although the TV doesn't distract me, it does distract him....
Joan, what you just said about visual comprehension is very profound. I know that I learn visually MUCH better than I do by ear. Even if I'm attending a lecture, and I take notes, the mere process of translating the oral presentation to the notes that I see visually makes all the difference in the world. I don't need the notes afterwards, it's already "imprinted."
My husband, now, he's definitely someone who learns by hearing, not seeing, always has been. (I suppose this may become a problem for us in the future.) Putting things into writing don't help him at all.
But for sure, different people learn different ways, even when we're healthy. This is something we need to take into account with loved ones who are having trouble communicating and remembering...
Don't know if I am right or not. But I have found that if I ask my DH a question that has two choices he always says "I don't know". Like: Do you want chicken or steak? Do you want to go to the store with me? You want to go see Dan (a friend)? I think if the conversation requires a decision from him he can't make decisions. He can carry on a conversation if there are no choices or decisions to be made.
For a long time my husband could choose between two choices, but not three. I started getting a lot of I don't knows and the people here explained to me that he could no longer hang onto the first choice long enough to choose between them. They were right.
Sometimes however if I give him one choice at a time he can tell me no, he doesn't want that one, and if I offer a second at that point he can say yes or no. Last week it was the third thing I found on the menu that I knew he might like that was his choice, but one offer at a time.
The I don't knows used to drive me nuts, but now I recognize that he just plain can't make a decision any more.
I also have finally realized that my husband cannot make a decision. If I ask him for example what restaurant & give him 2 choices, he will always say either I don't know or the last choice. Even if I switch them out, he always says the last one mentioned. I don't ask anymore, just go where I want.
Well, my DH has gone further downhill. He can't reply to what he wants to eat - even if you ask him if he wants one thing. And he says no to everything (2 year old again) whether it is concerning food, if he wants something to drink (he'll say no, then get up and bring his glass in the kitchen for me to refill it!), or if he wants to watch a movie (he'll say no, then get up and pick out the one he wants to watch and go put it in the DVD player!).
So now, I don't ask. When we went to see "Mamma Mia" Saturday, I just asked him to put on his shoes (he wears houseshoes around the house) because we were leaving. I got him a big tub of popcorn and a coke, and like my grandsons, was happy to sit and eat popcorn and watch the movie! Afterwards we went to Olive Garden, and I just ordered his favorite meal there, which he ate. (However, he can no longer put the fondutta (hot cheese mixture) on the bread slices - my daughter and I have to do it and hand it to him.) Oh, yes! One more thing - he always has coffee to drink and lines up the three sticks of sugar to put in his coffee cup before it is even brought to him. He lines up two sets of three and rearranges the Sweet 'n Low and Splenda and Sugar so that they are separated in the bowl. He tried to put the sugar in his glass of water, and frowned at me when I stopped him. Then, after he got his coffee, and had the sugar in it, he took the straw from his water glass and was going to try to drink his coffee out of the straw - but again, mean ole me took it away and told him to pick up his cup! <grin> He was fine after that!
I have to have his undivided attention to get through to him, and even then, I can't always reach him any more. When that happens, I just hug him, wait a little while and try again.
Today, as we left Georgetown U. after his Merck vaccine trial app't, he thought he saw a park out of a 7th floor window, on our way down the hallway.
We reach the 7th floor elevators. I push the button. The elevator bell dings and I turn to see him striding over to an unknown guy talking on a cell phone in the lobby. "Jeff!" I say. "Elevator's here!" He turns, and I pull him on. The cell phone guy's face has that confused expression of someone who's wondering what-the-heck that weird man was walking over to him for.
"I was going to ask him what park that is outside," Jeff says.
"There isn't a park," I say. "There's a lacrosse field across the street, but no park."
A custodial lady gets on at floor 6.
"What is the park out there?" says Jeff to the lady.
She looks a little confused and says, in heavily accented English, "Is a place for hospital visitors and workers." She must be referring to the terrace in front of the main entrance.
On floor one, we head toward the main entrance, to leave. Jeff veers toward a lady near the entry way. "I want to ask her what park that is," he says. "She's on the phone," I say. He does an "oh well" gesture with his hands, and follows me outside, where I show him--on our way to the parking meter--that there's nothing out here but houses and a lacrosse field.
Best advice from all the Alz. experts on that one - don't waste your breath trying to reason with him that there's no park - just say - it's a park where kids play lacrosse. Or games if he doesn't know what lacrosse is. And besides, if it was a lacrosse field, it probably looked like a park to him.
This reminds me of my DH a few nights ago when we were on the back patio. We live on a hill and just below our lot is a 3 story house and they have a balcony on the second floor and their dog is out on this balcony most of the time. My Dh says..."look there dog is on the roof again"...he never made any correction to what he said and I had a good silent laugh about it.
Joan's advice is well worth taking. It doesn't just go for the park, but for anything he brings up. The best thing to do when it comes up in a different context is to politely agree, make up white lies, like that's such & such a park, yes, I'll handle that, whatever. Divert his attention to something else. And yes, it may have looked like a park to him. But I imagine what upset you, was that he was going up to strangers in an inappropriate way. Someone told me about cards you can get from the Alzheimer's Association, that you can hand to strangers when this happens. I haven't gotten them yet, but I'm not far off.
Oh yes...I agree with all that. I was more trying to illustrate how he gets these ideas and thinks that it will help to approach random strangers with his questions. That's the weird part.
I finally learned my lesson. At first when my DH said, "I've never been here before" I'd try to help him remember when we had been there. Now I say, "isn't it nice to enjoy places you've never been" or something like that and it works like a charm.
my dh just can't seem to make even the simplest decisions anymore. if i ask if he had rather have this or that to eat,he will say "i don't know", or "what do you want me to eat"? same thing with watching tv [he can't use the remote anymore],the same answers. i need to just fix his food and give it to him and turn the tv on what i know he will watch,but it's hard not to give him a choice,it's just a habit to ask. but it's getting harder to get through to him. it's like he doesn't hear me and i have to repeate over several times to get through to him. sometimes i feel like a parrot,having to repeat everything several times. the choice of eating out is no problem,because he doesn't like to go anywhere. jav
I'm so glad I checked into this discussion. I've been going quietly nuts because I cannot get an answer out of DH. What do you want to eat? What movie do you want to watch? etc. You folks covered just about everything. He answers "I don't know." If I press the issue, he'll get angry and say "Oh, I don't care. Just do what you want. You always do what you want anyway." I've just been fixing meals and he always seems so appreciative. Tells me what a good cook I am, etc. (I made 2 slices of peanut butter bread).
On other thing--if I don't fix him something to eat, he doesn't eat. I made his lunch the other day and had to leave for a couple of hours. When I got back, the lunch was still sitting there. I asked him about it and he replied he didn't know it was for him.
My husband seems to still want to have an opinion, but he can't seem to actually manage to have one, or to make a choice. Even a yes/no choice is getting harder and harder.
jav, that's it! Joan shouldn't get a dog, she should get a parrot! Imagine how much easier it would be on the nervous system, to have a parrot endlessly answering the endless questions ... as long as she had ear plugs, of course.
My DH brought e around when he told me that I say too many things, too fast, so he can't understand me. he knew it better than I, and he told me. It is so hard to always remember that though/
Another "button" is broken - the "decision making" button. We want them to have what they want, but they don't remember what they want all of the time. It's hard making decisions, and they would rather we make them now.
My husband loves biscuits with butter and jelly, and yesterday, for the first time, wouldn't try to butter his biscuit. He ate it plain. I wonder if it is a vision or physical reason. Next time, I'll butter it before I give it to him. I didn't want to make an issue out of it.
I got to the place where I didn't ask him any questions. Just gave directions "here is your ice cream" "lift up you leg" or whatever. And yes, you feel so cheery-fake.
BTW - jav- I found a very simple remote on line by googling "simple remote" it only had a few buttons - on/off and maybe four buttons of different shapes that you can program for his favorite channels.
A friend of my DD's was telling her about her AD father, and all the hoops the mother would jump through to try to make him happy. He kept saying he wanted to go home, and telling her about a park he used to go to when he was little and get to eat ice cream. One night she put him in the car and drove from Texas to Kentucky straight through (they'd had a bad experience in a hotel..)
So they get to Kentucky, and she took him to THE park, the one where he spent his childhood. She sat him on a bench, and bought him ice cream. While he's eating it, he turns to her and says, "I really wish we could go to (name of park) Park and eat ice cream there."
trisinger - I love that story about returning to the Park! That is what I feel like I am doing these days. Hank keeps saying he wants to 'go home' - but it is quite a few places he has lived before. Now we are in Astoria, OR where we last owned a home and it didn't quite turn out like I envisioned. I truly do want him to be happy but I'm not sure there is any way to have happiness when you are losing so much of what you were and what you remembered. Now the TV just seems to be noise to him and I find myself so relieved when he is asleep. Today we picked up a couple of weeks worth of mail and he had three magazines. He was so confused by that as if he were overwhelmed that he was supposed to read them. Next time I will put one out and see if he even wants to read it - there is no way I would renew any of these subscriptions.
Fran, my DH's favorite way to spend time was reading. He loved to read. He had a book in his hand every time he sat down. Last year he started re-reading his favorite books and ignoring the new ones we bought by his favorite authors. As the months passed, he had two or three open at once and would pick one up and look at it for a while and put it down, get up and go outside for a while, then come in and pick up another book and glance at it for a while, put it down, get up and move something I would have to find later, pick up the first book again, etc. Two months ago he just chose one book and carried it around with him and pretended that he could comprehend what he was reading. After two weeks of this, I finally said "Honey, I know how horrible it must be not to be able to read and enjoy it anymore" and gave him a hug. He hugged me back for a long time. Later, he put the book in the bookcase, and hasn't picked up one again.
He can still read words - he just doesn't seem to be able to comprehend written sentences any more. It is so sad.
My husband actually buys 5 or 6 papers a day in addition to the local one that gets delivered. Only God knows if he is actually reading any of them, or understands what he is reading. For a whole bunch of reasons I wish he was re-reading magazines. He has two subscriptions of his own, and one in my name that both of us like, and he hangs onto old copies forever. At some point the newspapers will just die off. In the meantime we are paying a fortune for them, but they are one of the few joys in his life, so we do it.
Trisinger's story is so poignant! We try SO hard to "make them happy" and the truth is we can't. At some point they aren't capable of happiness. Peaceful is the best you can hope for.
I'm working very hard to ask only one question at a time, and then the one I want him to do, like when your kids were little. If you want them to have milk you ask "Do you want a full glass or milk?" Don't even offer juice. If I offer two things my DH says 'Whatever you want." And then at times he gets aggravated and says "You always decide what I should do." No win, so I try not to 'play.' He so far is good at taking direction and help scheduling things to do...this is very early yet. Much he can do on his own yet--drive, move, run snowblower, clean house, laundry, and more. He still can learn simple tasks that are 'hands on', which make us wonder if this really is Alzheimer's. But WHAT it is does not matter anyway, so we go with the official diagnosis.
To respond to another comment above, when I want to talk to my DH about something, I ask him to look at me, again just like I did my kids. When he looks at me it seems like things get through better.
I'm finding that I don't ask now. I just fix dinner--he loves my cooking (at this time). I fix him all of his meals and a nice snack in the evening. Today he got a renewal slip in the mail for Nat'l Geographic. He's been taking it for over 20 years. I pay all the bills and I have that slip in my 'pile of stuff.' I'm trying to decide whether I want to renew it or not. I doubt if he will miss it. Is that taking too much on myself--after all, they are his magazines and he loves them.
Mawzy, In the past husband subcribed to every golf magazine, read them from cover to cover. I noticed he wasn't reading them any longer, so one by one I didn't renew. He has never mentioned not receiving them once.
Mawzy, I'm going through the same thing. I'm going to renew things for one year, one at a time, but not until it is almost time for them to expire. No early renewals. My only questions will be, does he look at it when it comes? and does he seem to enjoy it? If he still loves the magazine, get it.
Mawzy, my husband used to read magazines from cover to cover. He can't any more. However, in your case, with National Geographic, there are so many beautiful pictures to look at (even if he doesn't read the stories) so he might still be able to enjoy that magazine. I might subscribe to that one for one more year.