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I swear it tears a tiny piece of my heart out every time I see my dad now.


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Ladies, for some reason, it really *does* help to know that others have walked this path before me. That there are those who know exactly what I'm going through. It makes me feel less... crazy?

 

I kinda wish everyone (by which I mean mom, dad, and my older sister) were ready for hospice. But they're not. So long as dad's willing to keep up with all the treatments and doctor's appointments, that's his decision, and I'll support him. And while I'd do ANYTHING to have dad live with me, it's just never going to happen. My mom would never allow it, because it would look bad. And if there's ONE thing that matters to my mom, it's appearances. And my dad won't do anything that upsets mom.

 

He does always have the option of refusing dialysis, and we know that would be a peaceful way for him to go. I just don't think he's at that point.

 

It's so confusing. Because each specialist, nurse, doctor, etc keep acting like' Well, you know, we just need to give him this treatment/this test/this medication etc, and control this issue/this emergency, and then he can recover! See! Everything will be fine!"

 

And all I see is dad continuing to decline. He's NOT GETTING BETTER. I just want to scream that at someone sometimes. I mean for crying out loud people, LOOK AT HIM!! He's emaciated. He's doesn't even have the energy to SIT UP. He can't keep food down, he's in constant pain, and he's miserable. He's NOT getting better.

 

I just can't do this. I mean, I realize I don't have a choice. But I feel like I spend all week longing to go see dad, but then once I'm with him, it's almost like I'm watching some sort of live horror show nightmare thing. And it's all I can do to hold it together on the hour long car ride home so that I don't fall apart in front of my boys.

 

How do I tell dad that it's ok if he wants to give up and die? Is that even something I SAY? How do I know when he needs to hear that, versus when that would be NOT a helpful thing to say? It's so confusing.

 

I need dad to know how much I love him. I mean, I tell him all the time. But I still feel like I fall short. Like I haven't adequately conveyed just how much he means to me.

 

But I do have one small blessing the Lord gave me a few weeks ago.

 

I have a real desire to get my nursing degree once the boys are older. I don't know if the Lord has it in our future or not, but it's something I'd be so very grateful to be able to do; be a nurse. But the Lord spoke to me the other day while I was praying. He told me that I was missing it; I get to be dad's nurse right now. I get to help him physically, give him love, support him spiritually. I am getting to nurse him right now. It just really helped my heart at that moment.

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Aw Bethany :grouphug:

 

The doctors will continue to treat as long as the patient wants treatment. They just keep on treating. They don't want the patient to suffer and die, so they continue treating. If you want to talk about death, you will have to be VERY direct with them. In so doing, you must also remain calm so that they will feel safe to talk to you.

 

Have you asked a doctor, specifically,. about your father's prognosis? Likelihood of death? Chances are they will not say "He's dying" but you could ask them to tell you what type of progression you are looking at. It might help to have that hard-core information on the stages (physically) that he will go through.

 

Another option is to go ahead and talk to a hospice worker just to get some better information, or rather, information from another perspective.

 

As for talking about dying, that's a tricky one. With my aunt (more like my sister), there were many times I was tempted to tell her those things. For a long time, I was glad I held off. For much of the seven years of her illness, she did not want to die. For me to give her that permission, to tell her it was okay to let go, would have been an unbearable discouragement for her. However, at one point she told me that if she could not be a mother to her children (she was brain-damaged and living in a nursing home) then she would rather die. She told me she had prayed about it. That opened the door. At the time, I just said that I understood, and I told her I loved her. Later, as her body twisted and become largely immobile, I told her I hated to see her suffer, and that it would be okay for her to go to heaven. Whether or not that was right or okay, I do not know.

 

The lesson I took from that was to follow her lead. She was dying by inches, yet wanted to live, so it would not have been appropriate for me to speak in that way to her. I believe things changed when she herself was able to embrace death as her own choice. What was agonizing at that point was that it took another two years after that for her to actually die. She lived long past the point that anyone--including the doctors--thought possible.

 

Allow yourself time after these visits to recover. This may go on for some time. It will help if you have some sort of ritual for going there, and another ritual for leaving and recovering. When I was visiting my aunt, I made sure I had chosen good music for the car ride (45-60 minutes). Once home, my darling husband would usually have tea for me. I couldn't bear to be with anyone right away, and usually went upstairs to the office to play on the computer and just be alone doing something fairly mindless. Often I might watch a movie or a couple cooking shows or something. I could rejoin the family after a few hours, but stayed pretty locked down and antisocial for the entire weekend. It would have been unbearable to go to the grocery store or out in public. Honestly, even church really took a lot of energy. The bottom line is to choose a ritual that will refresh and rebuild, and follow that routine.

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