Do we pretend we're not caregivers with our Loved ones?

I am at the same place with my DH. As caregivers we feel constant sadness, anger, guilt and fear of what is yet to come. But when he tells me how much he needs me it reminds me how vulnerable, scared and confused he is. So I try to take a deep breath, refocus and take another step forward. Take care. Hugs.

I’m not sure how to respond to this. Have you guys always had these little spats? I’m just sitting here thinking how wonderful it would be if my DW who is in stage 7 and and can’t speak a single intelligible word came up to me and told me I was doing something wrong - lol. Be thankful that he can still talk and still care for himself in several ways. There’s going to come a time when at least one of those will no longer be true. Having said this I promise I am not being judgmental here. I have vented about things like this too. It’s just now that we’re at this stage it gives you a different perspective. We all go through it. Hang in there.

I can't tell you what you should do, only how I do things. My DH is somewhere in the 3-4 stage but things changed even before he was diagnosed. Once we had a diagnosis, I read everything I could, but the Youtube videos by Tam Cummings, Teepa Snow and Natalie Edwards helped me the most on how I needed to react and what I needed to say. Basically, it is "yes, dear" to everything they say. I know that things will never be as they were before, but I can still make my DH feel loved and valuable. When DH does the dishes, takes out the trash (his regular chores) I try to remember to thank him. Sure, once in a while I get testy; I am only human. I end up stuffing a lot of feelings so that DH can remain calm. As to the question " do we pretend we're not caretakers with our Loved ones", the answer is yes. I think it is important to help them maintain their sense of dignity. I think that feeling numb may be normal and probably partly because we do so much stuffing of our feelings. Hang in there, just get through one day at a time and do something good for yourself.

Dear @shiawase12 It’s cathartic to vent! Admitting that you are angry, sad, feeling guilty, etc. tells your brain that you are under stress. I have learned through different videos (as @Maru mentioned) that expressing what you are feeling is one way to get rid of some of those bad hormones like cortisol that increase our anxiety levels. So writing them down or even saying those feelings out loud is a good thing!

I’ve also learned that our LOs loose the thinking, reasoning, and filtering part of the brain first, but the ‘emotions’ part of the brain goes much slower. So they react to facial expressions, tone and volume of voice, and our own emotions. What we need to try to do when things start to go haywire is to concentrate on our reactions. As @annie51 wrote - leaving the room or taking a deep breath and quickly deciding on how to react calmly is a good strategy. I’ve also come up with my own calming statements to see if I can diffuse a situation. Here are a few:

“I can see you are angry with me. No matter what, I still love you! How can I make it better?”

“I’ve got you!”

“That was hard on both of us. But we are on the other side now. Let’s see what we can do to make things better next time.”

“Even when we disagree, I am here for you. We are a team.”

“As long as we are together we can make it through the rough patches. Let’s figure this one out.”

I bet you can come up with your own set of phrases. Sometimes they will work, and other times, not so much. The point is to keep trying to let your DH know that you love him and will keep him safe.

Take care. This is so very hard!

I am also finding that negotiating the progression from spouse to caregiver is extremely difficult. My DH is aware that he is no longer the vibrant man he used to be and that our relationship has changed, but he has no idea why. He defers to me to make all the decisions and schedules. Then he alternates between appreciating my help and accusing me of being controlling. As a spouse we try to give them as much dignity and independence as possible, but as caregivers we feel the responsibility of seeing that they are doing what is best for their health and safety. My DH is probably a stage 5 or 6 also. I say "probably" because no one tests him or gives me any feedback on that. I hear people here on this site talking about having a neurologist or a neurological psychiatrist involved in their LO's care, but I wouldn't even know how to make that happen in the quagmire of our current medical system. It is all I can do to get appointments for the necessary medical issues. I have recently recognized that I am not as resilient and capable as I once thought in terms of being able to take care of my DH on my own until the time comes for MC. I am now in search of a good adult daycare to give him more stimulation and me some time off. I assume that he is confused about our relationship as well as most everything else happening around him, and while that breaks my heart, I know I have to prioritize my own health.