Friday, August 17, 2007

Hospice is an attitude

Hospice is a great program. Dad's doctor recommended hospice in January and they admitted him the first of February. Dad has been helped so much he is tremendously improved. So much so in fact that I wondered if we would be allowed to remain. And hospice has helped me a lot, too. Just one example is when I was gone for 3 days the hospice nurse gave dad his insulin injection. That's a big deal for me.

No one really knows why dad improved so much. It could be this very strange disease. It could be something else. It could be he doesn't even have the disease but some other form of dementia. Our best collective guess is that he had unknown and undiagnosed pain that's been relieved to some extent. But it is just another single uncertainty in an entire ocean of uncertainties.

Pain is tough to deal with in dementia patients. It is kind of like with really young children. They just are not able to express whether they are hurting or the nature of the pain. The clues have to come from some other behavior. So the dementia patient might act aggressively or exhibit other strange behaviors because of pain. But it is hard to know, another uncertainty, because the dementia can also cause those same kinds of behaviors.

Hospice is concerned with making the patient as comfortable as possible and pain free. They are not concerned with cures and treatments and such. Which is good because Alzheimer's has no cure and no treatment.

I know all of this of course and I agree with it and I signed up for hospice.

Making every decision, especially in health related matters, for someone else is an entirely separate and heavy responsibility from caregiving. It again is where the responsible person has to set aside his or her own self and attempt to do what the loved one wants. How does one be objective in a subjective situation? Especially when there is already a conflict of interest for the person making the decisions. I find this stewardship role to be an entirely heavier burden than I expected.

Just this last week dad's condition worsened dramatically. This recent episode really tested my own attitude and resolve about hospice. I just so naturally fell back to thinking about finding and treating whatever was causing these symptoms. I wondered if we should not go to the ER or check into the hospital and run tests and so on. And I know how bad the hospital experience is having endured several with dad myself. So I questioned my decision about hospice. I can leave anytime so I wondered if I should. I questioned whether this is really what my dad wants.

Sometimes I wonder anyway that if I had somehow found a different doctor and he had used different drugs that dad wouldn't be like this. He'd be all himself again.

I waged a little war inside my mind. It was entirely internal but that makes it no less violent. It is a cruel war and one that I fight a lot. It is cruel because I have to take both sides. It gave me a little foretaste of what is going to happen someday. It made me question how I am going to handle things the next time and the next and then that last time whenever that may be.

I have found so often over the years that most things require a little knowledge and skill and a whole lot of practice. For some reason I hadn't expected that with hospice care.

All of my life has prepared me for the rest of my life. I find that so interesting.


nancy said...

i enjoyed reading your post. a lot of it reminded me of what was on my most recent post. russ has been on hospice since february as well and i have had similar thoughts to yours. i guess great minds think alike! LOL

redcedar said...

You are asking the question here that tormented me for many months before I finally got Hospice for my mother. You said:

"How does one be objective in a subjective situation? Especially when there is already a conflict of interest for the person making the decisions. I find this stewardship role to be an entirely heavier burden than I expected."

I knew that I personally thought Hospice was the right thing for her my mother. But I couldn't be sure whether the real reason I wanted Hospice was that I was getting so sick and tired of the endless round of doctor visits, bloodwork testing, hospitalizations, that seemed to be stretching out into infinity.

It really took a load off my shoulders when my mother's favorite doctor (her cardiologist) actually brought up the subject of hospice, without my mentioning it. He was very clear that he thought it was time. That finally relieved me of the agony of self-interrogation. What a gift that doctor gave us.

flintysooner said...

Thanks for your comments. We are all in the same position so often.

~Betsy said...

Your post is so thought provoking and spot on. Being the one to make all these decisions is overwhelming.

I think you have done the right thing by your dad. He sounds as if he is a strong man who is still trying to hang on to his independence, despite his physical limitations. The day he said, "I love you, too" last week, I think he was giving you confirmation that you are following his wishes. And he appreciates you.

Stay strong.

Lori1955 said...

Well I certainly understand the pain thing. I have to judge by how loud she yells and the movement of her feet to determine her pain level. I wonder if I made the right decision bringing hospice in instead of insisting she had an MRI or something to find the cause of the pain. Of course either way it would probably still be just pain pills.
I think you are doing a wonderful job with your dad.