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The look said it all
Posted: Monday, September 9, 2019 8:45 AM
Joined: 4/2/2018
Posts: 2771

This morning, my wife said she would like to go out to get a couple of sweatshirts today. I made breakfast. Just as we were getting ready to eat, I said maybe we should go to the mall, which is close to Costco. She asked me where Costco was. She had been there many times. As I was eating, she kept looking at me, almost staring. She ate 2 or 3 bites, and she was done eating. The look said everything - "I don't know what is happening, and I'm terrified". That's the first time I've seen that look, even though there have been many times she didn't know where things were locally.
Posted: Monday, September 9, 2019 8:56 AM
Joined: 1/21/2017
Posts: 238

So sorry Ed, you must want to fix it so badly. I know I'm lucky in that my husband mostly accepts what is going on. He defers to me to run the power tools, make decisions, keep the calendar and the finances. When something hits him, he just denies there is a problem. He told a friend recently that he could still be driving, but he agreed to stop to make me happy. He also rejects any idea of having a babysitter or keeper besides me. His neuro told us he is now in severe dementia by the way he answered the mini mental questions.
Posted: Monday, September 9, 2019 10:42 AM
Joined: 4/2/2018
Posts: 2771

Thank you. My wife very rarely complains. She mostly watches TV, and not much more. She has accepted the fact that I take care of everything else. But she's pretty easy to care for, and I'm grateful for that.
Dreamer Lost
Posted: Monday, September 9, 2019 12:57 PM
Joined: 3/7/2019
Posts: 448

Ed, this is one of the hardest parts of this disease for me and my DH.  My DH can still talk up a storm (word salad) when in a good mood but he can literally do nothing for himself, except toilet and feed himself.  He often though has crying spells, saying "I don't know what to do" and it breaks my heart, sometimes it is "I don't know where to go".  And I don't know how to answer him.  I always hug him and reassure him I will always be there to take care of him, telling him he is doing everything he can and that he is so strong.  But it is heart breaking to see him so scared and he can communicate that feeling to me.  But on the other hand he is watching tv and a commercial came on with lots of puppies and he smiles and said, "it is a basket of puppies".  So I guess the ability for self awareness and to be able to communicate still is a good thing and a not so good thing. Blessings.
Rescue mom
Posted: Monday, September 9, 2019 1:01 PM
Joined: 10/12/2018
Posts: 1480

My DH never seems to notice when he does (or does not) do something “off.” Once in a while, much earlier, he might say something like “huh guess I forgot that” but always just sort of matter-of-fact, or NBD, like I’d say I forgot something at the grocery. He’d just shrug it off, like oh well.

It’s just noticeable? (Not sure that’s the best word) to me how so many others talk about their LO being upset/confused and being aware that something wasn’t working right. But I never saw or heard anything that. Did that self-awareness go so early? Did he know something was off? Did I miss it? Did he think everything was just SOP? I wish I knew, although maybe better not to.

Posted: Monday, September 9, 2019 4:22 PM
Joined: 9/5/2017
Posts: 559

My husband doesn't realize when he does something off or says something odd. He is in his own world.  Most of the time I have no idea what he's saying.  I just go along with whatever he is saying.  He doesn't know what's going on.
Posted: Monday, September 9, 2019 9:55 PM
Joined: 9/9/2019
Posts: 3

None of us  can really understand the terror our loved ones must feel as they realize what is happening to them.....  I guess all we can do is reassure them that we are there for them and will take care of them. A hug probably helps!
Eric L
Posted: Monday, September 9, 2019 10:14 PM
Joined: 12/5/2014
Posts: 1286

Earlier in the disease process, I used to take MIL to physical therapy 2 or 3 times a week. Obviously, she had no idea how to get there anymore and was absolutely puzzled by the journey. It was a newer memory. I totally understood the "WTF?" look, even if we went there 3 times a week. It just wasn't going to stick.

However, the "WTF?" look really got to me one day on our way home. We were on a major street off of the freeway and I could tell she had no idea where we were. She had probably been on the street hundreds upon hundreds (shoot, probably thousands) of times in the previous years. And the look on her face was like she had never seen ever been there before.
Posted: Tuesday, September 10, 2019 2:05 AM
Joined: 6/15/2016
Posts: 120

I’m so sorry, Ed.  It’s amazing how our lives change as we navigate the narrow, ever winding passages of this disease.  We accommodate things we never imagined and hold on to them as the life we knew fades into our own memory.