The "Oh thats new" moments

planetamy

I didnt know what else to call this thread. My newly diagnosed husband functions pretty well most of the time. Then moments like today happen. We pulled up to the store and he had the grocery list, but I mentioned getting coffee and he completely forgot where we where & what we were doing there. I just said "we're going to the grocery store right now," and he clued back in.

These moments are so jarring for me. Its like slamming into a wall. It's frightening & sad all over again.

Does anyone have a good way of dealing with these?

Thanks

Amy

Joe C.

Amy, All losses will sting and I don’t think there is any way around that. The loss that always sticks out in my mind was one day we were driving through the town DW was living while we were dating, we drove past the church we were married in and she pointed to it and asked, “what is that building?”😪. The way I learned to deal with her losses was to be grateful for what DW could still do, not easy but it worked for me. DW is now at the beginning of Stage 7, there is no verbal communication & no longer recognizes me as her husband but if I play music she will still get up to dance and for that I am grateful today.

toolbeltexpert

I agree with Joe I focus on what my dw can do still. And as this disease progresses that will become less and less. One thing I recommend is Writing down all the older stories your dh my have told you especially if they are childhood stories, they will be very useful in the later stages of helping your lo feel like they still have some connection with the world.

Music will always be there and is the best thing I know of for connecting with someone in late stage.

Ed1937

I think the first thing you need to do is to fully accept the diagnosis and what it means. Then you learn everything you can about the disease, and focus on the good things, while dealing with the bad times as they come. Do NOT focus on what might happen. Live in the moment, and try to make things as easy for him as possible. That will also help you.

Rocky2

Amy, I agree with the other responses.

My DW is now in stage 6 and has recently moved to memory care. I've tried to prepare the best I could for changes we would experience. I used online videos by Dr Tam Cummings and Teepa Snow, books like The 36-hour Day, and the collective wisdom of fellow caregivers on this forum. Even with that there were surprises and frustrations. However, it was always better for both of us when we focused on what was left rather than that which was lost.

I wish you moments of peace and joy among the difficult times in this journey.

Tom

Joydean

Amy I have to agree with what others have said. But there will be “oh that’s new “ moments all down this road. Ed is right don’t focus on the changes, but what he can still do. Enjoy all the good days. There will be days when you just want to sit and cry your eyes out and your heart is going to hurt until you think you can’t go on. But you will!! Because you are stronger than you think. I’m not trying to sound like a downer, but as you learn more about this awful disease you will be better prepared. Make all the happy memories you can now. Wishing you strength and peace. God bless you both.

SDianeL

Amy, today my DH, Stage 5 going into Late Stage 5 called me by his daughter's name. I gasped and then got hold of myself and kept busy the rest of the day. He was very quiet and withdrawn today and that is unusual. As new behaviors happen, it's like a jolt to your senses. As others have already said, I try to focus on the good days and what he can do and try to make each day as pleasant for both of us as I can. Sticking to a routine is best for him We no longer go to the grocery. It's too overwhelming for him. At first, I would order online and we would pick up curbside, now I just have them delivered. We still go together on Sunday mornings to get him a newspaper. It seems to calm him. He reads every word but I have no idea how much he remembers. Sometimes he reads it out loud to me. Thankful for those Sundays. Hugs.

GothicGremlin

Jarring the perfect word for how it feels. When I see new behaviors like that in my sister, I feel like I have a momentary deer-in-the-headlights look on my face. Then I quickly recover and usually manage to say the right thing, but it's a jolt.

I agree with what others have said - focus on what he can do now, not on what he's lost. A book that I can't recommend highly enough is Somebody I Used To Know by Wendy Mitchell. She was diagnosed with early onset Alzheimer's when she was 58ish, and the book is about how she navigated that time in her life. She describes what it all feels like, what bothers her, etc.

I found it to be very useful for interacting with Peggy (my sister). When I told Peggy about the book, she said "that's exactly how it feels - somebody I used to know." I would never have had that insight had I not read that book. In the early stages Peggy often told me that she felt like a different person, and prior to that book, I really didn't know what she meant. It gave us a way to discuss her feelings and what she still wanted from life. I guess the point I'm trying to make is that the book has a lot of good information about how Wendy Mitchell coped, and I found that useful so that I could sort of get inside Peggy's head to try to understand her and what she's going through. I know that book has helped me to reinforce her trust in me. Not so important in the very early stages, but important later on.

Watson1

Wow what great responses i have early onset and see my self and possible futures this helps

planetamy

Thank you all for your understanding & helpful comments. Its just such a relief to know I can come here and get support 🩷 Amy