I can’t help this pain I feel

My heart goes out to you. Your heart issues could be as simple as the massive stress you're under. I had someone recommend breath work to me as a means to help with my stress and I can see how it may be helpful. It won't change what your husband is saying or make it more acceptable to you. But you may be better equipped to handle the hurt and stress that are coming from these massive changes in your relationship.

https://www.youtube.com/watch?v=3qiwOvlIO0w

Dear 53roses- I agree with joyful heart, your cardiac issues could absolutely be stress related and fixable! My stress levels have wreaked havoc with my blood pressure- I’ve gone from high blood pressure (under control with meds) , to low blood pressure ( too low! controlled by meds) and now labile (both high and low, not under control yet but getting there, with meds). The meds help, BUT, finally the thing that has stabilized my stress level and helped me cope with the stress more than anything is functional breathing exercises designed to re-regulate and balance out the parasympathetic nervous system (fright and flight). I practice 10 minutes twice a day. I can feel a difference when I don’t stick to that routine. (Let me know if you want to know more). Diane is right, your husband knows you are someone he loves. Consider trying to care for yourself the way he would had he not been afflicted with this terrible disease. He needs you, and you deserve to learn you are stronger than you know!!! Please get to the cardiologist! Sending you a hug 💜

I get what you're saying. My "hack" on that is to listen to the instructions and treat them as if they're the only thing that will save you at that moment. I've had a very rough several months and yesterday was a doozy. But somehow I did manage to make it through the breathing exercises and I do feel better. I'm going to try morning and night with the same video to try to keep my nervous system in check.

I know exactly what you’re feeling. My DW is 15 years older than me and she started showing true symptoms 5 years ago after her mother passed. She had one moment where I had to convince her we were married, which involved bringing out our wedding album. She’s been pink-slipped twice.
She often talks as if we’re not married, or she’s waiting to go home. She doesn’t remember anything about our 18 years together, only current day-to-day.

I’m her primary caregiver and I also work full time. Luckily, I work close enough that I can come home at lunch to check on her. Also, my employer is kinda flexible about these things, and I have an open FMLA claim. Add to that, we have 3 senior dogs, one with hip dysplasia.
I invited my oldest son and his little family to stay with us, hoping to get some help. They have 2 under 2. They have their hands full already. And, like you, my health is suffering. I found out in March that I have chronic lymphatic leukemia. It’s in “stage zero”, so there’s nothing to do but watch and wait, but it’s one more thing hanging over my head.
I feel the pain that you feel. It’s called ‘grieving the living.’ She still professes her love to me at least once an hour, as your DH does, but the woman I married 17 years ago is no longer there.
I’m so glad I found this forum as I have absolutely no one to talk to here at home.

53 roses, although my DH is now in MC, I remember those nights of lying in bed beside him and crying from heartbreak and loneliness. My heart goes out to you. Sending hugs.

53roses, so sorry you have to experience this. It is by far the hardest thing, when our wonderful spouse no longer recognizes us and forgets we are married. I remember the first time my DH didn’t recognize me. It devastated me. How could he not know me!!! I called his sister in tears. It was also what caused me to seek medical help. I have sinced learned so much about this disease and we are now at late stage 6, with toe in 7 and have been on Hospice for a year. What you are experiencing unfortunately is normal. Yes things are changing and your role going forward will be that of a caregiver, but it was a process for me to actually accept that fact. I believe I finally came to the full realization last fall and have been more at peace with things since then. I no longer expect anything from my DH and know he needs my help with everything. But I also know he is doing the best that he can. I’m happy to have him here at home with me and hope to continue doing so.

I have a few Ring cameras around the house. I had one to watch her while she was in bed, but that didn't last. I think this disease either created or uncovered a case of OCD in her. She spends her entire day cleaning and organizing - often putting things where I don't find them. So, the bedroom Ring camera was … put away. I have to calmly convince her that her work is done for the day, or she'll be up all night "organizing."

I know it's starting to become concerning. I've come home many times and the back door is hanging wide open. She hasn't wandered off, just went inside and left the door open. I come home to almost running over a dog in the driveway. She's mixing stuff into her drinks … like hot honey in her flavored water, I've found cheeze-its in a cup of instant latte (that was supposed to be put in a blender, apparently).

It hit me really hard this morning. I'm not in a good head space, right now. Like you, I miss her. We used to have deep conversations. Could talk about anything for hours. Now, I'm lucky if she can find the bathroom with signs in the hallway and me pointing directly at the door. How I would LOVE to talk about the world with her. It's impossible when her world is in another dimension.

My daughter-in-law invited us to go to breakfast with them. I told them yes, just because I need the distraction - she's usually pretty "well behaved" out in public. I don't really want to go, but DW is happier when she gets out of the house for a while.

I reached out to the local Area Agency on Aging for help. Any help. I am so F&*#ing lost! I'd like to see, if nothing else, if we qualify for in-home assistance.

I told my son and his wife that we need to sit down with DW's daughter - her son would be absolutely useless - to talk about what long-term care would look like. It's almost time and I'm in over my head.

It’s harder on her kids than mine. My son loves her, but he didn’t know her until he was 11. He’s sad to lose her, but he handles loss pretty well. Her kids lost their father in 2009. I was with them when they got the news. They both came apart. Her son fell into a bottle and didn’t come out for 10 years. Her daughter is a bit stronger, but her emotional wall is HIGH. I know they’re afraid of losing her, too.