I invite you to log onto the home page -www.thealzheimerspouse.com - and read today's blog. It is a communication reminder to those of us who are constantly slipping up when speaking to our spouses.
Oh, how true. At the neurologist we spent time discussing the need for the caregiver to come earlier in the morning. We said she will come at 9:30am on Monday, I would give her the house key, and then she would come at 9am because she could let herself into the house. This was discussed with L more than once, with the neurologist and on the car ride home with the caregiver.
Monday goes OK.
Tuesday morning L calls in a panic because the caregiver arrived at 9am. She berates me for not telling her that the caregiver would come at 9. Either she didn't remember or she couldn't follow the entire discussion. After a few minutes I stopped arguing on whether I had told her or not. I knew I did, and I knew that she didn't remember or grasp that fact meant that she had gotten that much worse.
Can I relate....We have a conversation about something and I think well maybe he isn't that far along. Then he says who is that little girl running around....our granddaughter that is here all the time.
Amber, yes I can relate to your comment,except Sonny says who is that little girl running around and there is no one here.It used to be he thought there were a lot of little girls running around,with seroquel we are down to one.No sense in trying to explain it to him,
You have hit the nail on the head with your post, Joan. Every time I forget and give a detailed explanation of something it just creates more trouble! It's like beating your head against a brick wall. As hb's neurologist says, you can't argue with the disease. It just get's sadder and sadder when I spend time trying to explain who members of his family are that he can't remember. WE are at the point now that when I remind him he has Alzheimers he can't even grasp what that is, even though his sister and sister-in-law have it.
I totally agree with everyone. I, too, am so lonely. My spouse was always the extrovert talking with everyone and know he rarely speaks except to say I love and did you sleep good in the morning. We can't discuss movies, news, tv, food. This disease has changed me so much as well. I have anxiety over everything, I cannot make a decision. I am so sad. Joan thank you being so open in your feelings. It helps to know I am not walking this road alone.
This truly is a Cardinal Rule. Yet I break it all the time and then pay the consequences. Those of us dealing with spouses with AD for a number of years know all the rules by now ... but lifelong habits are just so damn hard to break, aren't they?!
Well said Joan! I learned this some time ago yet still sometimes have to stifle a scream with how simple our conversations have become. At times too, I slip up thinking he is having a bit of a lucid moment and maybe we can have some kind of connected talk. How I miss those!! Always fails so thank you for the reminder of the Cardinal Rule.
Yeah, Also dont give too much information! Im in a quandry about what to tell my Dh. I am leaving on Thursday morn for 6 days of respite. Going to New York City!!!! Should I say how long Ill be gone? Or just say Ill be gone for awhile. My Dh wont remember whay I say!
You know...having traversed this road to stage 7 now, I'd say that this process became maybe slightly easier to deal with emotionally once I got past the agonizing years of thinking I could maybe, just possibly, a tiny bit, get through to him.
I don't especially like the term emotional divorce, because I think many people take the words too seriously and view it as a much harsher transition than it needs to be. So I won't use it, but I will say that it's when you really truly internalize and completely grasp the truth of the Cardinal Rule that you can begin to move from heartbroken left-behind spouse to compassionate caregiver. And it's a very different relationship. It's the transition that's a bear and a half. Not that the heartbreak ever fully goes away, but you can change. At least I did.
Sometimes I wonder if that makes me seem cold...but I don't think it is that. I think it was purely what I had to do to survive emotionally.
I think, over time, we learn that step by step we tell our LO less and less because they understand less and less. It is shocking each time this realization presents itself. As stated above, we no longer can discuss movies or news or the color to paint something, or why I fired the gardeners, to why we need new blinds for the windows which now also need replacing nor why I need to have the driveway redone...can we say pot hole? Essentially we have no conversation..just last night we were watching a movie on TV..a Clint Eastwood film Dirty Harry I think...anyway, right in the middle of the show, he asks, "When is Dirty Harry coming on?'" and I just said, you are watching it now. Sometimes he looks at me with a blank look or a look like what language are you speaking or who are you..you know the look of uncertainity...it is like being pushed back or pushed away. In the morning when I do his meds with him, he will say " Boy I am glad you do this. I wouldn't remember to take these. What will I do if you are not here?" This from a man who flew jets, little fast movers, whose motto always was " hesitation can be fatal" ( he was a combat pilot). Yes, it is lonely. When the volume on the TV gets too loud during the day, I go out in the yard and pull weeds..You should see the pile of weeds I have now! And to realize it is going to get worse, no words, heartbreaking is not strong enough of a word to describe the destruction this " other person" in the marriage does..hopes and dreams just gone.
Emily, your comments resonated with me. I prefer to think of this as a "transition" as opposed to emotional divorce. Life is transitions, some positive,some negative, but in order to successfully transition we must let go of something and embrace the new something. Sept. 2008 Joan wrote a blog which talks of this and would be great for newcomers to read. My hb has one foot in late stage 6 and one foot in stage 7.
Your TV comments struck a chord with me. I put on a show that I recorded for Sid to watch. He doesn't know how to fast forward through the commercials, so I know to come back in an hour when the show is over and change it or shut it off for him. Lately, I have been coming into the den and saying to him - Is it over? He says he thinks so or maybe not or he doesn't know or all three. Like an idiot I say - Haven't you been watching? Is it over or not? He says he doesn't know. When I check, most of the time, the show isn't even over. This is a man who could take apart, put together, and hook up any current (at the time) piece of electronic equipment known to man.
Yet, surprisingly, when his wireless headphones that are hooked up to the bedroom TV wouldn't work, he looked at the back of the TV, and was able to tell me the name of the adapter I needed to buy at Radio Shack (whose largest stores he managed for over 20 years) to make the wire fit into the hole. A couple of hours later, when I was ready to go to RS, I asked him what I needed to buy, and he had forgotten what he told me. He hobbled back into the bedroom, looked at the back of the TV again, and this time I wrote down what he said. I bought the little thingy, and it worked.
It sure is a strange disease, Joan. It is sunny and warm today and this man now no longer wants to go out to check out the apricot tree or his fig tree..just wants to sit in the TV room and watch motion. I have not found a way to get him fired up to do any thing these days. Get up about 7:30sih Come out to kitchen dressed in the same thing he wore two days ago We do the meds, He has a little breakfast which he always says is too much. sometimes he eats it all does not read the paper much if he looks at it at all. goes to the loo goes to the TV room turns on whatever...today it is a cooking show following the police chase scenes Gets up to go to the loo Has lunch..says it it too much but ate it all Still in the chair. Goes to get a little drink back to TV room, I\ I ask to change the station to see the news I fix dinner, he changes the station, Give his pm meds Serve dinner he says it too much may or may not eat it then asks what have we got that is sweet...not wanting his usual ice cream..now it is muffins He watches more TV 8:30 is he goes to bed... I stay up and catch up on my favorite news shows on FoxNews..( I like The Five)
then sunrises and we start the same thing all over again unless there is a doc appt or I have errands to do..but his day does not change....doesn't even want to go for a ride.
There is no conversation in this house either. He sits and watches Fox News all day unless I change channels. ( I put on Animal Planet some days for a change) I don't think he is even watching most of the time. I have to tell him to come for meals or to let me help him change his Depends. He can't even get out of his recliner without holding my hand to pull himself up. I NEVER discuss finances. He gets one small check each month that I tell him to sign but he doesn't even ask what its for anymore. He has no idea how much money is in the bank.
Today it was nice out so I told him to come outside while I cleaned up the patio. He sat slumped in the chair looking into his lap. After 20 minutes the top of his head was getting red so I got him back in and he went to bed until supper.
Glad our daughter lives here. At least there is someone to talk to.
So, does it really matter that they don't comprehend what we say? I do find myself engaging in way too much detail for my dh and he tries very hard to act like he understands and I have to repeat a lot. A bit frustrating for me, but probably not so much for him. I still feel the need to communicate and share things with him even though he doesn't understand - I just want to talk to my partner. However, there are many things I just don't tell him because he will remember some piece of it that totally drives me crazy.
I've never been good at fibbing, I just don't think fast enough and out comes the total unvarnished truth. When it comes to what to tell him and what not to tell, I have to really give that lots of thought ahead of time or I just blurt out all of it; and yes, sometimes that presents more problems. He doesn't like the new caregiver because he doesn't want to be babysat and he can be a very difficult fella at times. I don't want the new caregiver to get scared off. But, you are all right, they forget whatever you tell them within seconds of getting it out of your mouth, except sometimes the little things that they get a bit wrong and you can't blast that out with dynamite.
I'm finding it difficult with my husband who is no longer working but still very much functioning - with confusion. He's called and cancelled perscriptions; arranged for work to be done at the house (only to forget about it when the person arrives); made and missed doctor appointments that he's never mentioned to me. I too still try explaining things thaat I'd be better off just responding with yes or no when possible. My cousin died 2 weeks ago and we didn't attend the out of state funeral but almost everyday my husband asks "didn't someone die yesterday". I just say yes and tell him who - each time.