Wednesday, May 6, 2009

There are no words for...

Well, Day 11 is ending. It's been quite a ride. A slow, painful, frustrating, infuriating, numbing ride. When I arrived Dad was in the hospital hospice ward. He could get to/from the bathroom with a little assistance and was eating a few bites of solid hospital foods. He could speak, hoarsely, but words were there. Three days after my arrival, I brought him home. Nothing much changed the next day or so, but on the tail end of the second day going into day three, he started heading downhill fast. He suddenly couldn't get to the bathroom on his legs even with my assistance. His appetite, as little as it had been, bottomed out to nothing. He has become mostly unresponsive and taking his meds in liquid form as its the only way to get them in him.

Now, my mother, being one of those mothers that fixes all things with food, simply wasn't grasping the fact that food was no longer an option. But when she was made to understand this fact, it seemed to be the only way she was capable of "helping". She abdicated her mind and has been fuzzy on the business that needs to be taken care, as well as burial arrangements. This mother and father of mine, that had always been ultimately responsible and foresightful, failed to make plans for their eventual demise. Absolutely no plans had been made and they were clueless as to what they were to do. Now, as abdicated as she may be, she still has not relinqueshed the real "power". I my typical get-things-done manner, I have made phone calls, researched, and laid out the options...better yet, the best option. All that is needed is the say so to move forward. But that is not coming. As if I haven't done or said a word on any of the subjects, she will meander her conversations into "plans" that she thinks things should be. And they couldn't be any further from reality, much less a workable option.

In the meantime, neighbors, hospice and local pastors and chaplains have made a steady stream into our home daily since having a hospital bed brought in and simply keeping him "comfortable" is our job. As I watch the ravages that this insipid cancer does to this human body, I don't believe he's truly comfortable at all. But the medicines do keep him in another world. I guess that's something. Again I wonder...why don't we hear more about this out there in the world?

Saturday, May 2, 2009

Where is that confidence?

Wow, who was it that said I had come to grips with this and had found a home in my purpose? Surely it wasn't me, because I don't feel anything like that today.

I've been with my parents for 5 days now. My dad has come home from the hospital and we are "managing" his pain. But he is in pain quite often. He still gets around some...very slowly, with a very nervous me standing at his elbow at all times ready with the catcher's mitt. He sleeps alot. In bed and in a chair. He has no voice and is hard to hear and understand a times. But his mind is still very much "on" with the occasional word that plagues us all on the tip of our tongues.

The greatest challenge I have found so far is my own selfishness. This is not "home", the place where I can relax. It's very uncomfortable here, in many, many ways. If I could know my own family and home were just across town or nearby, it would relieve some of the stress I feel. My poor son had to be on the receiving end of my first breakdown (yes, I said first because I highly suspect it was only the beginning) yesterday, via telephone. What started out as a "how was your day, dear?" conversation, turned into a full-blown blubbering mamma apologizing for doing so. It wasn't a pretty sight. Bless his heart, he's still talking to me today...he's a good kid.

I am quickly discovering that there is no relief or respite for the caregiver. At my father's advance stage, I am needed even when he is asleep for such duties as dispensing meds or going to the bathroom. And no one comes to visit. So all three of us are homebound. Day drags to night, night turns to day, day drags to night.....a perpetual swinging of a lone pendulum. Isolation. That's a good word to describe this, isolation. It feels like the whole world has stopped spinning but you can't find the way off the merry-go-round and everyone has gone home...deserted you.

I do know better. In the dead of the night, when I am needing to stay awake for the final medicine dispense, I am surfing my virtual community of friends that I used to chat with, laugh with during my days. Many of them leave me very encouraging words and wishes and let me know how proud they are of me and are praying for me. I wish they'd quit thinking grand things of me, though. I certainly don't see the same traits in myself that they seem to see in me. But I will take all their prayers! Maybe this will become easier and I will find some sort of footing. I really don't want to feel begrudging. My dad deserves the care and if that means some sacrifice or hardship on my part, then I am going to keep trying.