Monday, April 8, 2013

Going through the Stages

I have been a nurse for more than 25 years. I learned all about caring for a dying person. In the hospital or at the nursing home. For 8-12 hours at a time. I know all the steps that a dying person goes through. Denial, anger, bargaining  depression and acceptance. I read and understood the Kubler-Ross Model. And how it applied to a dying person. But I have NOT been prepared for how this process would affect me, the caregiver, at home, taking care of my husband. It is hard. I am NOT prepared.

I am angry. I am angry at him and at God. I am angry at the people around me. Why can't anyone see how hard this is. I am angry at people who think they know how I feel.  I am angry that everyone wants to know how HE is doing. I am angry that he doesn't want to eat. I am angry that all he does is sleep. I am angry that I am now the one who is in charge of EVERYTHING. I am angry that I am so unprepared. I am angry that I am angry.

The not eating is the hardest for me to accept. He doesn't even know that he is not eating. I have tried to bribe him with every food that he used to love. He will take a bite and say "I'm full" or ask for a napkin and spit it out, saying "doesn't taste good." I know all of this is normal for the end of life process. But I want him to try to eat. He tells me that he is 'not ready to die' but yet he won't eat. He has gone as long as two weeks before with little food going into his body. Thank God he is still drinking water. But that will not sustain him forever. ( *currently he is eating small amounts).

He doesn't want to go to the hospital. He tells me, 'don't call the doctor cause they will want to put me in the hospital and I am not going.' So I say, then you are telling me you are ready to give up. And he says no. He says if the doctor thinks I need to go to the hospital, then I will go. But then he says he really wants to die at home. Then he will say, 'if that is what this is. Am I dying?" I am so confused. Does he want to fight to live or is he just saying what he thinks I want to hear.

I am resentful. I resent when he won't eat. I resent when he wakes me at night for a drink. I resent getting him up to the commode and then he can't go. I resent trying to please him. And all of this resentment leads to guilt. I feel guilty for feeling resentment. I feel guilty for not wanting to be woke up at night. I feel guilty for just wanting my life to me normal again. I feel guilty for not wanting to take care of him. The guilt is eating me alive. And then I feel guilty for feeling guilty.

I am afraid. Is he okay? Does he really want to die? Does he have a choice? What will it be like without him? Will we be okay. A day or two will be okay. But what about this summer? What about Christmas? What about all the days ahead when I will miss him and wish that he was still here? What about that?

And what would happen if something happens to me? Who will care for him the way that I do? Who will take care of Darian and Harley? How will they go on without me to hold it all together for them? Will their parents come back? Do we want them to come back? What will they become? How is all of this affecting them?

I don't ask for help. And I resent that. What kind of help do I need? I don't know. He wants me to be the one taking care of him. I don't want to impose on family members. I think I already expect too much of the kids. But they are awesome. And so giving. I don't want them to start to resent what is being asked of them. I want them to remember Papa and not remember having to take care of Papa. They love him so! Will it affect them.

I feel isolated. I don't go out. I don't talk to others. Few come to visit (not that we were ever big on that) My friends have their lives. Their kids. Their jobs. My family have their lives, their families, their responsibilities.  They call and some of them come. A couple of them have been through this and have lost their spouses. I think they understand. But I resent all their advice. And I hate it when they tell me they have been through this and they know what I am going through. No one knows what I am going through. That is why I vent here. On my blog. To myself. To remember.

If I take a break, I feel guilty. He asks for me constantly when I am not around. I know I need to take breaks but I feel it is imposing on others. So I rush to get back home. And I dream of the next break. Does that even make sense. I can't relax when I am away from him. I wonder if he is okay. Does he want me? Is he asking for me? Is this about him or is it about me. Of course, it is about HIM. But it is OUR story.

He is the one that is dying. Why am I moaning and groaning? My life will go on. I question what will happen to him. I believe in God. But why can't God fix this. Why is this so hard? I am a professional. But I have never had a husband die before.
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16 comments:

  1. Oh, darlin' I wish I could make this easier for you. For all my education, and the decades of nursing experience, I don't know what to say to you. I wish I did. I wish I lived closer to you, so I could give you an afternoon off. All I can do, as an internet friend, is keep you and your family in my prayers. It feels like so little. I just wish I could give you a hug!

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    1. Thank you so much Lisa. Just knowing that I can write about it helps. And I accept your hug :)

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  2. It no doubt has to be far deeper of an emotional journey to have this happening at home. When I was in college, my father had cancer. I can still remember those days of seemingly forever exhaustion. I found ways through, not always what I felt was best at the time, but sometimes I just couldn't go on. But for all the exhaustion, I have the comfort of knowing I was able to be a real help. I know there must be a real desire to protect others from the pain you are feeling. Moan and groan here on your blog as needed and process this however feels best. I hope you both can find peace.

    if you feel like reading lighter things, my A to Z is at http://janiceperson.com

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    1. Thank you JP. I like the lighter side of things too, right now! Thanks for visiting

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  3. This post of yours really touched me. Wish I could help in some way, or say something that would make it better, but I can't. You are doing an incredible job and I admire you.

    This post helped a bit to understand what my sister in law went through. Me and my brother were very close. We worked together for more than 15 years, so we saw each other almost every single day. In 2011 we were busy planning his 50th birthday party (he was 16 years older than me). I went on maternity leave, and directly after the baby was born he got sick. He couldn't swallow and they thought it's a hernia. About 6 weeks later, still unable to swallow (he went to the hospital for drips to get fluids in) they discovered it was stomach cancer that has spread already. He went home and 6 weeks later he died. With a newborn in the house it was difficult to go and see him, and I only went to visit on weekends. His wife looked after him, but got a nurse to help out. This very short time period was so difficult, and I can't even begin to think how it would've been if it lasted longer. In the end we all wished that it would just be over, but at the same time we didn't want him to die. He died 2 days before his birthday.

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    1. I am so sorry for the loss of your brother. That would have been really hard. And too fast. It is a hard job being the caregiver but it hurts no matter who it is that you have lost!

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  4. I am at a loss for words. I want to tell you I know how you feel, but I don't. i think it is being in a limbo state. The unknown. The undetermined amount of time. All of these feelings you are feeling are legitimate feelings. As the primary caregiver, you are often overlooked. I want you to know that since I've met you a month ago, you have been in my prayers everyday. Your husband also, but mainly you. You are a very strong woman, but you don't have to be strong all the time. The guilt that comes with that is enormous. I wish I were closer so that I could just come spend the afternoon with you and let you talk and vent and cry and yell and all other emotions you have building inside you. Keep doing it here. You are in my heart, thoughts, and prayers.

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    1. Thank you Cristy for understanding. I think it is the being strong all the time that is the hardest!

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  5. My heart goes out to you, Paula. I can't even imagine what this must be like. I hope that writing out your feelings and frustrations at least helps a little bit. I also hope you can feel all the light and love from all of us following your journey and praying for you.

    I've also been enjoying reading about your amazing travels so far. I'm not always able to comment, between time constraints and Wordpress not getting along with Blogger, but I've been with you everyday. Keep writing, my friend.

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    1. Why thank you very much. This really touched me. I do have my internet friends support and it means a lot to me. I have that problem sometimes, too with not being able to comment. I usually just switch to IE and it lets me.

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  6. My story is not near as bad as the one your going through (doesn't even come close), but I still understand the feelings of resentment and guilt.

    My husband isn't "invalid" nor is he bedridden, but he depends on me much of the time to do/get things that he can't do/get himself. He's not the type to be content to just lie around and do nothing but he needs help physically to do things (guess who gets the job). The insurance company won't pay for any type of help like that and because he's not yet 65 Medicare won't help out either. I find myself getting resentful at times of having to constantly be there to do things for him.....

    But then other times I feel guilt. Guilt because of the resentment. Guilt it is getting harder and harder on me physically to help him to stand/transfer, to help lift and move things he wants done, etc.

    Like you I worry about the future.... I worry what will happen as he ages, as we age. I worry about his health.

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    1. Oh Tena believe me I feel your pain. I wonder how we can find you some help.

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  7. Wow Paula. I can only imagine the pain you are in, though I have also just read the post on his leaving denial behind and as tough as that was to read as well, it does appear some healing is happening. I can't say anything to make it better and trying I don't think would help either, but I wish I could be there to give you a hug and help. I know I feel nudged to do more than I do for those I know are in similar situations. Thank you for crying out and letting others know about your struggles. I will lift a prayer for you now. God bless, Maria Delight Directed Living

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    1. Yes, he is making little baby steps working through the stages of this whole dying process. I am glad he at least is no longer in denial. Hopefully he won't get stuck in anger. I think I am still there!!!

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  8. Wow, Paula, I know I am getting into this late in the journey but I cannot believe that someone else can express exactly what I feel!!! Please know that you are not alone and thank you for being brave enough to voice what we all feel and think.

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    1. Thank you so much Wendy! I just try to write what I feel. And if it helps someone else feel like they are not alone then I have accomplished one of my goals. It is not always easy to write about the negative side of being a caregiver because we are afraid of being judged. I just am not longer afraid of that!

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I love to hear what you might think. Leave me a comment. I guarantee though that I will delete your comment if you are just here to cause trouble. So tread lightly!