I can’t help this pain I feel

53roses

I miss my husband and he’s laying right next to me. About 6 months ago, my husband started forgetting we were married about once a week. Then about 3 months ago he started telling me he doesn’t want to be involved with anyone about once every 1-2 weeks. It doesn’t usually last long but every time I wonder if it will last forever. Is this the day he forgets me? We had a great couple weeks. Then tonight, just minutes apart, he says “I love you very much. And I’ll always love you” and seconds later says “I don’t want to be in a relationship with anyone. I thought I loved you but I didn’t” My husband tells me he loves me at least once an hour. I fall asleep in his arms every night. But not tonight. He’s sleeping and I have tears running down my face. He’s forgotten most of the details of our life together but he remembers that he’s loved me for a very long time. Hearing him say he doesn’t tears the heart right out of me. I know this is terrible but last week, my primary said I had an abnormal ekg during my annual physical and my blood pressure was elevated for the first time. She wants me to see a cardiologist. My husband is 13 years older then me. And he has dementia. I don’t want to “fix” anything with me so I don’t want to see a cardiologist. I know that’s wrong but it’s just how I feel. He’s my whole world.

Joyful Heart

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

SDianeL

so sorry. I know it hurts. Remember it’s the disease. He may not remember details but he knows you are someone he loves. Please take care of yourself. What would happen to him if something happened to you? Praying for your strength. Hugs. 💜

Karen711

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 💜

53roses

https://alzconnected.org/discussion/comment/249737#Comment_249737

thank you for your kind words. . For right now, I just don’t want to fix anything. In a strange way I’m happy that I may not be ok. I feel like I can cintinue to take care of my husband. If that changes I’ll get to a doctor because he’s my only concern. Breathing exercises or anything that will help me so I can help him sounds like something that would be good for me.

53roses

https://alzconnected.org/discussion/comment/249733#Comment_249733

Thank you. I’ll look into breathing exercises. I’ve never been able to concentrate before but I’ll try.

Biggles

oh 53roses it’s the saddest most sole destroying hideous disease of all. It breaks your heart time and time again. I am in a better place since I found this site and have been able to share every thought, feeling, fears and tears. You can vent big time and get heartfelt responses and realise that you are not alone. I wrote poetry and cried buckets of tears while my DH was sleeping during the day. It helped so much. I now play soft romantic music from Rod Stuart, the Andrew’s Sisters, David Campbell and Michael Bouble, it helps to remind me of the man I used to know, helps me to be kind and gentle in these tough times. My DH loves the music too and occasionally we shuffle in the kitchen (with tears silently pouring down my face). Eat chocolate together, make pancakes don’t give up it must be so scary and awful to be in their situation. Take care and come here often and share and vent. You are not alone.

Joyful Heart

https://alzconnected.org/discussion/comment/249745#Comment_249745

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.

53roses

https://alzconnected.org/discussion/comment/249746#Comment_249746

We listen to music that we shared together in the beginning of our relationship. He had songs he loved and would play all the time when we were able to be together in the earlier years. It sometimes makes me sad though. This disease attacks everything you know and everything you planned. I can’t think of anything that would be more painful.

53roses

.I’m sure my heart issues are something simple. I just don’t care either way. That surprises me because I’ve always taken care to be healthy. This disease has taken everything from me though, it even took my desire to be healthy. It’s awful.

l7pla1w2

https://alzconnected.org/discussion/comment/249921#Comment_249921

This gets said here often: You have to stay healthy to be able to take care of your DH. See the cardiologist.

CLEcynic

https://alzconnected.org/discussion/73683/i-can-t-help-this-pain-i-feel

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.

53roses

https://alzconnected.org/discussion/comment/249997#Comment_249997

your life sounds like mine. I have a 15 year old dog that can’t get up by himself and he weighs 50 pounds! My husband tries so help but it usually ends bad. One of our children lives with us with her husband and 3 kids and they take care of the yard and garbage etc. I work full time too and I have cameras throughout the house. My daughter is here some of the time that I’m not and that helps a lot. But it’s my husband I miss. I miss our life together. I miss talking to him. I miss his strength and intelligence. I miss him so much.

White Crane

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

thank you. We’re having a very bad time right now. It’s been a long day and I guess he’s very tired. But the last 2 days were incredible. It was like he had nothing wrong with him. It was perfect. Then right in the middle of kohls I could feel the change. I didn’t let him say it. I couldn’t hear it while I was driving. I told him it was ok. I don’t want to talk right now. I’ll bring him home to nap. He wasn’t sure where home was. I don’t think he knew we were married. He’s resting now. I wonder how long I can do this. Is it easier to forget that I love him? I feel like I should start thinking of myself as his caregiver. Not husband and wife. Will that be easier? Should I try and forget?

Kat63

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.

BPS

53 roses I think excepting that the relationship has changed to caregiver is what most of us have to do, but it is not easy. You will feel like you made the switch then all of a sudden the old relationship slips into your emotions. It is hard to make that change and it defiantly is not a straight line, but what is with this disease. The switch to caregiver sometimes feels cold but it is less emotionally difficult day to day because you expect nothing (at least nothing good). I don't think you forget but you except the change. I have thought about what I would say at her celebration of life after her passing. I don't think I will be able to say much about the good times because they are so far behind me that I don't think I will be able to see them for a while.

CLEcynic

https://alzconnected.org/discussion/comment/250110#Comment_250110

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.

53roses

this is what I’m afraid of also. There will come a time when I can’t leave him alone. My daughter and her family will want to move on eventually and I can’t blame them. At that point, I plan on selling our home. Sometimes I can’t concentrate at work because of something he said the night before. But the camera is usually uneventful except that he eats things not in his diet.
My husbands son and daughter are also useless. I guess they feel since they are about an hour away, they are free from any obligation. But my daughters are God sends. I don’t know what I’d do without them. His 2 kids visit with their family maybe twice a year. They dont stay long. It’s sad because he was an amazing father. Always putting them first above everything. He called them daily until his memory started failing. He attended every event. Never missed a birthday. Showed up to help with every project. He was very close to them. His son will come and take him to appointments of if I need him and he’s free. So that’s a help but I don’t really need it too much. His son told me he misses his dad the way he was. I get that. I do too.

CLEcynic

https://alzconnected.org/discussion/comment/250206#Comment_250206

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.