I feel so hard hearted

[Fuchsia]

I had cause to realize today how differently I am coping with my husband's illness than others in the family.  I think it's because I am with him full time.  I don't react emotionally to a lot of his symptoms or his moments of pain.  I deal with what I need to for him and keep going. If I break it's later.  I am also able to keep doing mundane sort of normal/happy things while he is obviously not well.  I kind of compartmentalize and stay in the moment as best I can.  Otherwise I'd lose my mind I think. I notice that my daughter does this to an extent too.  When she feels happy she doesn't have to feel sad...she has learned how to take an emotional break.  Which sucks cause she is only 6 and shouldn't have to cope with this. 

 

Others in our family are feeling their pain 24/7.  His mother was over today and stayed while he napped.  She sat for a couple of hours and listened to his labored breathing. She was a wreck with worry by the time I got home.  I listen to that all night every night and no longer worry.  I sit in the kitchen and listen to him cough and just play on my phone and wait till he's done and needs me.

Its crazy...there's so little emotion to it.  I feel like my heart has hardened.  But it's a self defense mechanism! I can't live in pain all the time.  I can't imagine how it looks from the outside.  They all say they don't know how I keep going.  Part of me is turning to stone. 

[Guest DebW]

Darling.....you are far from hard hearted....you are just doing what you have to in order to survive this and to help and support your husband. If you weren't able to push the constant sickening worry and dread down you wouldn't be able to function. You are living every second of this and you are there for his every need. He knows he can trust you to do what needs to be done. Please don't be too hard on yourself, you are amazing and very brave. ((Hugs))

[ManutesGirl]

I often think that those not as close in some ways have a harder time dealing because it isn't their life.  We don't have a choice and we live the life we have to live at the time.  It somehow just becomes another part of our day to day lives.  I just did...I didn't think about what I was doing.  I did it because that was the life we had to live at that time.  It also meant we still experienced all aspects of living, including laughing and enjoying things.  Heck, DH & I got in a huge fight when he was home on hospice.  I walked out of the room and remember thinking now what, he can't come after me and I have to go back in there to get ready for bed.

 

So you do what you need to do to get through each day.  Caring for him and your daughter are your priorities and you need to do whatever you have to to do that well.

[hachi]

Dear, dear Fuschia,

 

I remember this all too well. The good, bad and awful moments. The awkward "I'm sorry I am not dying fast enough" comments, meant to be a joke but a statement that still haunts me, along with the horrible wishes for it to be over.

 

Thankfully, we found our peace with it all, and were able to spend his last days exactly where he wanted to be. There was a sort of rhythym about it that seemed natural. And I was always happy to see the visitors go, so as not to feel their pain as well.

 

PM me if you want...

I had cause to realize today how differently I am coping with my husband's illness than others in the family.  I think it's because I am with him full time.  I don't react emotionally to a lot of his symptoms or his moments of pain.  I deal with what I need to for him and keep going. If I break it's later.  I am also able to keep doing mundane sort of normal/happy things while he is obviously not well.  I kind of compartmentalize and stay in the moment as best I can.  Otherwise I'd lose my mind I think. I notice that my daughter does this to an extent too.  When she feels happy she doesn't have to feel sad...she has learned how to take an emotional break.  Which sucks cause she is only 6 and shouldn't have to cope with this. 

 

Others in our family are feeling their pain 24/7.  His mother was over today and stayed while he napped.  She sat for a couple of hours and listened to his labored breathing. She was a wreck with worry by the time I got home.  I listen to that all night every night and no longer worry.  I sit in the kitchen and listen to him cough and just play on my phone and wait till he's done and needs me.

Its crazy...there's so little emotion to it.  I feel like my heart has hardened.  But it's a self defense mechanism! I can't live in pain all the time.  I can't imagine how it looks from the outside.  They all say they don't know how I keep going.  Part of me is turning to stone. 

[Carey]

compartmentalizing is probably saving your sanity at the moment. I really think youre right, it's our body's way of sensing total panic and so certain things "shut down" as it were, to shield us.  It's not hard heartedness, it's like the turtles shell.  Just prepare yourself, because obviously I can't know for sure, but  from my experience and others here, once the "flight or fight" mode of taking care of him and doing what you know HAS to be done, as soon as that part is over there may come a total emotional breakdown.  And that's not wrong either.  There will come a time when you will feel those emotions.  I also think others are right, it's your 24/7 reality, he's half of YOU.  So you've had to find a way to deal or fall apart. It's not their life so they don't have that protection going on. If that makes any sense?

[Guaruj]

I had cause to realize today how differently I am coping with my husband's illness than others in the family.  I think it's because I am with him full time.  I don't react emotionally to a lot of his symptoms or his moments of pain.  I deal with what I need to for him and keep going. If I break it's later.  I am also able to keep doing mundane sort of normal/happy things while he is obviously not well.  I kind of compartmentalize and stay in the moment as best I can. 

 

What you're doing is perfectly normal. You're keeping your family going while caring for your husband. If you're at all like me, you're also keeping your spirits up to avoid bringing his down. I always saw this as a matter of loyalty.

 

|+|  M a r k  |+|

[lcoxwell]

From my experience of 13 years as an extreme caregiver, I can tell you, most assuredly, that you are not hard-hearted in the least. Your husband needs your strength, as does your daughter. You are the one, who is there, day in, day out, doing what you can to take care of their needs. If you fell apart, each and every time he had a bad day, and each and every time you saw him in pain, you would be of no use to him or to anyone. Having the strength and the ability to carry on as normal of a life as is possible, given your situation, will help your family to feel a sense of peace and comfort. Sadly, there will be plenty of time to fall apart, soon enough. For now, just continue to be the steady rock, and if you do feel the need to fall apart, that's okay, too.

[SailorGirl]

You're not hard hearted.  I was my husband's sole caretaker for 2 years.  In the end, he was bed-ridden and his family finally came to visit.  His cancer had spread to his bones, and was very painful.  He would ask me to re-position him, but even that hurt and he would cry out in pain.  I did it as gently and quickly as possible, but I distinctly remember his mother telling me that I was being too rough with him and running out of the room crying.  You do what you have to do.  Sending lots of hugs. 

[Fuchsia]

I do fall apart sometimes, just not as often.  It shows up in me in other ways like my lack of focus and anxiety. 

 

Unfortunately my calmness means that others think I am coping well, which I am not.  So people help less than they could because they think I am doing ok.  They can't see how they can help me because I'm not crying and wearing my pain.  It sucks.  A few people get it though.  Which is beyond wonderful.

[Fuchsia]

You're not hard hearted.  I was my husband's sole caretaker for 2 years.  In the end, he was bed-ridden and his family finally came to visit.  His cancer had spread to his bones, and was very painful.  He would ask me to re-position him, but even that hurt and he would cry out in pain.  I did it as gently and quickly as possible, but I distinctly remember his mother telling me that I was being too rough with him and running out of the room crying.  You do what you have to do.  Sending lots of hugs. 

 

It's hard coping with the mother.  Rob's is having a really hard time coping with him being in pain.  She will do anything to help ease it, but sometimes there's just nothing that can be done. She can't let go. I have been letting go with each piece of him that I lose.  Because otherwise I'd lose my sanity!

[canadiangirl]

Chiming in belatedly to send you my support and echo what the others are saying- compartmentalizing and some emotional detachment is normal and probably necessary for survival in terms of mental health right now.  My child was at a similar age to yours.  You have to create a sense of normalcy for her as well.  I don't know if people quite realize the crazy toll it takes on a person to watch their partner die slowly, and suffer, whether via physical pain and/or the emotional heartache that the loved one must and does feel.  It is so relentlessly intense, I think our brains find ways to distract us and it is useful.  I took up a new hobby not too long before DH died; any chance I could get, I left the house for an hour or two, just to drive around, scream in the car, be.  I felt guilty about leaving, especially because he could not get away from the situation, but I had to recharge my battery to keep going, and to be okay for my family.  My DH's family, including his mother, did not come very often precisely because the intensity and the pain was too much; I am glad your in-laws are there, even if it is hard on them.  Not showing up is the stuff regrets are made of.  My social worker used to remind me that not all spouses stay until the end; some just cannot deal. You will likely feel the same way I do, proud that I was there, honoured to have been his person.  Keep going, it sounds like you are doing amazingly well, you will get through this. 

 

It would mean a lot to me if you could please give him a hug or extra tenderness after reading this.  I would dearly love to hold my husband's hand again and a moment of love by proxy would be divine at this point. 

[Guest DebW]

It would mean a lot to me if you could please give him a hug or extra tenderness after reading this.  I would dearly love to hold my husband's hand again and a moment of love by proxy would be divine at this point.

 

me too.

[Trying]

Fuchsia, your heart is hard, it is so full and needs protecting.  You have a job to do in caring for your DH and you need that strength to keep going. 

 

I was an extreme care giver for only 4 months when my DH went through his fast and furious battle with cancer.  I felt that I did not have the luxury to deal with the emotional aspects because I was too busy directing his medical care and providing his personal care, all while taking care of 3 kids and a home.  My MIL could come and sit, hold his hand, cry, and accuse me and the doctors for not doing enough.  I had some resentment, especially when her anxiety would make his pain worse, but for the most part I preferred my role.  He was grateful that I was in control so he didn't have to be.  He appreciated our quiet and calm moments together, when I had the rare opportunity to express my sadness he was happy to comfort me because it wasn't constant.  Those 4 months were the most intimate of our 20 year marriage and while I wouldn't wish it on anyone and I would trade it all in to have him whole and healthy again, I am grateful that if he had to die, we had that time together.  We left nothing unsaid and we gained a new level of respect for each other during that time and I was honored to be with him as he made that final transition.  Everything leading up to that moment was about him, making his journey smooth and peaceful, helping him leave with no regrets.  It became about me within 5 minutes of him drawing his last breath. 

[robunknown]

My story is similar to those above, and you are doing awesome. I had that hardened exterior too, because I had a job to do, one that I knew I would grade myself on for the rest of my life. But I'm comforted mostly by knowing I did everything I needed to and more than most. The hospice nurse had to tell her parents  (in front of DW) that they need to leave the room if they are constantly breaking down. My wife told them right there it was taxing, but used me as an example, she said that I broke down to her a couple of nights before crying that I didn't want her to leave, she said that meant so much to her, because even though I was her "rock" she knew I still cared.

The most "hard hearted" thing I had to do was when the timid doctor who pulled me outside my wife's room (she was mostly unconscious ) told me the level of pain medication he was approaching was reaching overdose levels. I looked at him straight in the eye and sternly told him that her and I had said everything that needed to be said, and he needed to give her whatever she needed to be not in pain (what she feared most). I look back and know that was what needed to happen, but I still don't know how I kept my shit together to say it.

Trust me the emotions will come back, they will suck at first but good ones will come too.

[anniegirl]

Compartmentalizing is perfectly normal and when you have children, I think it's probably necessary too.

 

It might strike those around you as being hardened but generally only the people who don't spend serious amounts of time with you or your husband or those who you don't confide in. It's not your job to worry about them or what they think so don't.

 

Important things is to do what's necessary for you and your daughter. Take care of the two of you. Don't judge yourself.

[Fuchsia]

 

It would mean a lot to me if you could please give him a hug or extra tenderness after reading this.  I would dearly love to hold my husband's hand again and a moment of love by proxy would be divine at this point.

 

I did. Big hugs back to you.

[Guest fern]

You are not hard-hearted. Like others have said, it is a normal reaction to extreme stress.

 

In the last hellish months of my husbands life I had to hold it together in order to function: as primary caregiver, as mom, the breadwinner, as the strong one for everyone else.  I had to be able to compartmentalize. A memory that stands out is helping half-carry my flailing, moaning husband to the bathroom and then playing crazy eights with our 4 year old a few moments later. My mother in law said she thought that was "disturbing" but meanwhile she just sat there and didn't help (and didn't even offer to take my 4yr away so they wouldn't have to witness these scenes) and then left because she couldn't cope.

 

Unfortunately others see this coping mechanism as a problem. But I see now that I had no choice.

[anniegirl]

Fern's story brings up an interesting point.

 

Those who are usually the most critical of our ability to take care of business during these traumatic times are nearly always the ones who are the least helpful.

 

Consider the source when criticized and file it appropriately.

[SemperFidelis]

This was a helpful thread to read. I did full time psychiatric caregiving for my husband.  I numbed out too at some point. And I have wondered if those caregiving years are what helped make the death (which was sudden) actually feel manageable.....by all means it shouldn't have felt that way.

 

No one else saw his suffering(people suspected it though), just me. So fortunately there has been little room for judgement. One person has come forward and told me I was delusional because "he was fine, he would never kill himself, he wasn't suffering, he loved jesus" but that was someone my husband hardly spoke to in the last 15yrs of his life....for a reason. So it was easy to write off but still sad someone could be in such denial.

 

I am glad to know there is a deeper reason for my numbing.....it makes more sense now. I had originally thought it was strictly from the trauma of witnessing his death.....now I get that it was going further back.