Friday, January 28, 2005

I feel so unequipped

I am a Hospice volunteer, recently changed directions from patient care to grief and bereavement. The day after I finished my grief and bereavement training was the day we found out that my father in law (FIL) was close to death. We knew he was terminal. He has emphysema. Two months ago, his doctor told him that he had 2-3 years left. FIL didn't believe the doctor and told everyone that he has at least 10 years left. We got an email from him a couple of weeks ago that he was very weak and was having a hard time catching his breath. He said that for the first time, he was scared. I wrote back telling him that I was sorry he was feeling these things and asked what I could do to support him. He immediately retracted his statement and said that he really wasn't ss that scared or that sick. It was obvious that he didn't want to look in the mirror that was reflecting back with the acknowledgement I mmhad made. We visited him two weekends ago and I saw definate signs of end stage. Sometimes it's disturbing that I know so much, especially when I can pick up on things like that. I wrote him a letter a few days later suggesting that he ask his doctor about Hospice. I worded it in a way that didn't say that I felt he was dying 'tomorrow', but told him about a particular piece of Hospice that just provides support for those people that have received a diagnosis "such as his" but have lot's of time left. I poured over this email for about two hours so it was very innocuous and not pushy. I received an email back with two words, "not now". Nothing more. I cried all day, and beat myself up thinking I'd done the wrong thing. But I still justified it in my head because I knew that he was dying soon and had no idea. Unless there is someone visiting him with medical knowledge he will never be made aware of the stages he's in. And, of course that would mean that we'd never be aware. The next day he went to see the doctor. The doctor told him that he had "days, maybe weeks" left and that they weren't going to give him any more preventative medications (antibiotics, etc.) The doctor then told him that it was time for Hospice. FIL said he didn't want Hospice. I'll admit it, I'm frustrated with this and don't understand. I don't understand why someone would refuse such a wonderful program. I'm also frustrated because I know that this will place more demands on my husband. They want him to take time off of work to help drive FIL to the doctor. FIL wouldn't even need to go to the doctor if Hospice was involved. FIL and step-MIL have quit contacting me. They used to email hubby and me at the same time. Now they just email hubby. It's hard to not be hurt by this. I know it's because they know that I know "too much" about this sort of thing. By not including me in what's going on, it allows them to remain in denial. The step-MIL wants to do everything herself, but she also wants to make sure we all know that she's hanging herself on a cross 24/7. The dynamics there make the hair stand up on the back of my neck. I really dislike even going over there. But my husband will never know that. Nobody will. Ultimately, this is not my decision to make. FIL has a right to die in the way he wishes. Step-MIL also has the right to decide that she wants to physically exhaust herself. At this point, my job is to support my husband. That's what I'm going to do. I feel overwhelmed and drowning right now. In addition to this, I have scary things happening at work. It's all too much.

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