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I am going through a hard time with the fact, I got angry and mad at times. My precious wife died  Aug. 25 2013. I was her principle care giver for her personal and general needs. Hospice was a big help during the times they came,but I was the everyday provider.As her health diminished and her bodily functions became more stressful,I had gotten mad  and angry...I cannot believe I did this to a person who could not help themselves and was dieing. I have visuals that haunt me and make me feel so bad I cry when I think of my behavior...How do I handle this?

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Comment by PattyM on November 24, 2013 at 2:11pm

Oh god, I just read your posts and I also was irritable with my poor husband when he was so sick. Not all the time, but enough, and I too keep reliving it and feeling horrible and like a monster. I know he knew how much I loved him, but at times the guilt is overwhelming. People tell me that I did the best I could under such terrible and sad circumstances, and I guess that's true. But still....I somehow do feel better reading your posts and I know that we are not monsters, we are just flawed human beings who did our best.

Comment by Bruja on November 23, 2013 at 2:20pm
I can so relate to the guilt. I know intellectually I shouldn't feel guilty, I did my best however my heart refuses to listen to my brain so guilt I must live with. So wish it was my time to,go and not his
Comment by my roses on November 23, 2013 at 4:33am

My roses  November 23rd  2013

I want to share too... I was my husband's carer  virtually full time.  I fought battles for him in the hospital, with the nurses, with the electricity company etc over our bills.  I was constantly on the phone fighting... I felt so bad because my beloved  was often in the room on a second bed in the dining area.  I wanted to keep an eye on him and tell him I loved him as I did cooking etc.  This had been going on for about 2.5 yrs as he got better, and then later got worse, then he was ok... and then a year later he collapsed again.  The total stress of about 4 yrs began to overwhelm me. Mostly 4 hrs of sleep per night if I was lucky.  I did not get angry with him... however, after another  fight  with a company ( he was lying down in the same room) I felt so bad that he could hear me.   I got up and then just lost it completely, I started to scream I can't take any more, I can't take any more.   I was not shouting at him... but I just snapped. I then went  and phoned a friend asking them to come over immediately.  She came and held me... but saying BE STRONG ,BE STRONG.

WHAT HAD I BEEN DOING ALREADY FOR SO LONG?   This did not help me.  Anyway after crying and her helping a bit (cannot remember properly).  I  felt a bit better.  My immediate thought was what is this poor  man feeling lying there with me going off my rocker!!   I managed to talk with him and apologise and somehow during the rest of the day we hugged and I told him I loved him.  BUT... I am sure it was not good for his health that this happened.  He also would weep sometimes when he felt so ill and had said I feel bad that I cannot help you.  To see him weep broke my heart.  But the last christmas card he wrote said "I feel so inadequate to tell you how much you mean to me.  I cannot think of anyone else at this time that I love more and the monumental care you have given."   What I do notice is that even though he was very ill, I could manage somehow with 4 hrs sleep, once he was gone (and his spirit too) It was as if his spirit was giving me life, even though physically he could not.  Now without his 'spirit'  I am exhausted very easily.  Somehow he was keeping me going.  I feel that the emptiness is getting worse in fact.  The longing to see him growing stronger.   

Comment by shell on November 23, 2013 at 4:21am

Thank you for writing this as I know how hard it must have been. I have felt this way every day it seems since Jon died on Jan 2nd... His brain cancer changed him even before we knew he had cancer, I have such guilt from losing my patience at times and not being able to know what Jon could not say. We were not even sure what he knew or if he really understood what was happening, so difficult to watch your husbands mind deteriorate and then his body. Overwhelmed every minute for 15 months. About half way thru his illness I even thought (I feel the most guilt for this) how can I keep doing this, I could not imagine my husband dying but I could also not imagine being able to care for him forever in the state he was in , Now I would take care of him anyway he was. It is true if I knew then what I know now I would have been different. I have learned some lessons with Jons death but seeing you can't go back how can you fix what was broken or if it wasn't broken how would you have learned the lesson.

When the guilt comes I ask Jon to forgive me. Sorry I don't have any answers, I wish I did.

Comment by Patience on November 22, 2013 at 6:18pm

We've all been there... I got angry too.  Actually I repressed those thoughts, really, until just now when I read your blog.  I'm now remembering how helpless I felt.  Toward the end... it overwhelmed me. Wayne could sense it. He actually asked me to take him to the hospital, and I did.  I signed him off hospice, and brought him to the hospital. He died in the hospital 8 days later.  I feel very guilty. Very. But for Wayne and me, I guess I did the right thing. The doctors and nurses told me he was too fragile to be at home. He needed inpatient hospice. Still, I wonder, why couldn't I have succeeded at taking care of Wayne at home?

Comment by Lori on November 22, 2013 at 9:31am

So understand, alone at night changing the bedding for the 6th time, i was so worn out, it all seemed so hopeless, my husband couldn't even respond.  if I knew then what I know now now my patience would have been better, healing and forgiveness comes with letting go.  I did the best I could, my whole family did. In choosing to live myself and forgive myself I found peace.  Hugs and be gentle to yourself Next.

Comment by Choosing life on November 22, 2013 at 8:53am
Thank you all for posting your stories. I did the same thing as all of you. I was my husbands caregiver for five and a half months. I watched him go from a strong man to someone who could not bathe himself or go to the bathroom on his own. He told me how much he hated me having to do everything for him. I told him it was no big deal and I wanted to be the one to care for him. I was angry with him many times and I know that he could see that. I am crying now at the thought of it all. What kind of person is angry with some one so sick? I have asked God to forgive me. I have also stood at my husbands grave and asked him to forgive me.

I cannot tell you all how much your comments have touched me. Having people that understand and tell you that it is OK is priceless. So glad I found this website.
Comment by DontBlameJon on November 22, 2013 at 8:32am

I could have written the very same thing you did. The guilt can be overwhelming.  I was also the primary caregiver to my late husband Jon.  The emotional and physical exhaustion was so trying.  I was always frustrated that I had to do everything.  I loved my Jon to the ends of the earth, and the guilt of losing my temper on a guy who could not help himself can be unbearable.  I have been told though, that it is very normal to lose it during such a trying time.  I have been told that the anger we felt was mixed with hopelessness, a feeling of having no control over the fact that our loved one was dying; anger, fear, frustration.......all apparently a normal way to feel.  I know in my heart that my Jon knew how much I loved him, and your wife knew as well.  We are all human, and because we did not sign up for what you and I ended up doing by being the caregivers, we were lucky to have been able to be with them and care for them at their time of need.  Give yourself some slack for being so emotionally involved that you couldn't always keep it together.  An outside caregiver does this for a living, and they get to go home at the end of their shift.  You and I were in it 24/7, so we were bound to be imperfect, tired and profoundly sad and hurt. 

Comment by CertBear on November 22, 2013 at 7:16am

Next, I think we all know and our spouses know we did the best we could. You have to realize not only are they angry at their situation but we are angry that we are losing them. Every emotion imaginable has probably gone through all of us. Please don't blame yourself..As you said you were the caregiver. I for one understand. I was caring for my husband and in the middle of that my Mom was falling and rushed to the hospital. I now have her in a nursing home. I was angry at Mom because she was taking me away from John and was not always so nice to her. So please know you are not alone.

Comment by hisgirl on November 20, 2013 at 10:02am

I too said some things before I knew my husband was sick. Once he was diagnosed, I was thrown in the caregiver role. He lived 5 weeks. I was physically and emotionally tired. A day or two before he died, he had a restless night, he could not walk. Every few seconds he wanted me to get him up. I finally said no. You need to go to sleep. He said "forget it". The next day I was dragging and moody. He said he was sorry about the night before. I said that's OK, it's not your fault. He began to cry. My strong husband was crying. I hugged him and told him not to cry. I told him not to be mad at God. He said he wouldn't. We are angry at a situation we have no control over.

I replay that scene. I have guilt about a lot of things. How could I be so mean. I asked God to forgive me. I realize I am human. I realize I am but flesh.

Forgive yourself. You are human. You are flesh. When we know better, we do better.

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