Relief...

Lots of relief to write about... first is the DOGS! What a huge relief to have this break from them! The intensity level in the house is so much lower than when they're here. They're really not bad dogs, but they are very intense... whimpering and barking and just never settling down. Annie and I dropped them off at the kennel yesterday afternoon and I immediately came home and took down the gates, gathered up their bedding and put it away, let my animals have free roam of their house again and suddenly everything was MUCH simpler!
Annie and Adam and I had a big "sit-down" on Sunday night and all agonized about these terrible decisions we find ourselves faced with... morphine vs. no morphine... to medicate or not to medicate... is she suffering or not? Is she in "pain" or not? Is there quality here? Do we honor her wishes and not medicate? We talked it round and round and round and all wished that something would just HAPPEN that would take these awful decisions out of our hands. Annie kept saying "I don't feel equipped or qualified to be making these decisions... why doesn't the doctor come and tell us what to do?" The whole time I kept thinking to myself "Well, I've done this for a living... I should know what to do... " even though it feels like we just keep going round and round and never really achieve comfort for Mom. So we sat at my kitchen table and decided that until all three of us are equally ready and convinced that morphine is the right next step, we won't really start using it in any heavy doses. Anyway, so here's the relief. I had a visit today from the hospice social worker, Mary Lou, who I know from working with her. We talked a while and she advised me that the hospice team which gathers every 2 weeks to talk about Mom's case... the team includes the medical director, a pharmacist, social worker, nurses, hospice director and chaplin... met this morning and talked about Mom and what's been going on. She said that the team feels that, at this point, Mom should be on a morphine schedule around the clock. That she is NOT comfortable and that she IS suffering. I told her we had just all talked about this and were close to being OK with this decision, etc... so I said "just let us know what to do... how much do we give?" She said "well, just work with the nurse when she comes and you guys can figure it out". When she said that... it was like a relevation... I said "you know, when the nurse comes... she basically just says to me 'Jess, you know what you're doing, just let me know what medication and supplies you need and I'll order it for you'. All of a sudden, it occured to Mary Lou and to me that I CAN NOT ADMINISTER HOSPICE CARE TO MY MOTHER! I think I've been feeling like that was my job here... I DO know what I'm doing, I know these medications, etc., but I need to just be the daughter here! I'm way too attached and I want way too much to honor my mother, that I am truly incapable of making these kinds of decisions for her. But what a huge relief... Mary Lou said "we've all been making the mistake of thinking that you could be the hospice nurse here... but you can't. Let the hospice team take these decisions out of your hands." When I was the hospice nurse, I would visit a family, have no attachment to the patient and would be able to objectively identify suffering and the need for comfort measures. I could easily help a family create a schedule for giving morphine and could assure them that this was the right time to take this measure. Can't do it here... and I don't want to. So the team feels it's time... the team members are all in complete agreement that Mom should no longer be aware of the suffering that she is enduring. They've assured us that morphine doesn't kill people, that people can go on for weeks or months on morphine... but it makes them unaware of their suffering and it will enable Mom to feel good for the first time in a long time. It's really time. Adam said the other night "well, but every once in a while she still laughs at our silly jokes". And that is so hard... we can still get her to smile, if we try hard enough (like when he had to resort to putting the rubber glove over his bald head!), but that's about 10 minutes a day... the other 23 hrs and 50 minutes, when she's awake, she's suffering. She cries out all night long in her bed and can achieve very very limited periods of comfort in her chair during the day. Mary Lou said "If you were in your mother's shoes and she was watching you like this, would she let it go on a day longer than it had to?" No. My mother loves me too much. I love her... we ALL love her too much to see her suffer the tragedy of this illness. She doesn't deserve it. She is truly the warmest, most loving and giving, the bravest and most courageous, the most fun, the most kind-hearted and caring person any of us could ever know. It's not right that she should feel as badly as she does right now.
So she hates going to bed... something about moving from the chair to the bed totally sets her off at night (we'll have to reexamine that tomorrow and see maybe about arranging where she can stay in the chair at night) and it took a large dose of medication tonight to get her comfortable where she can truly sleep... but she's sleeping and it'll be the first night in very many nights that she isn't in total angst all night long. Wishing all of you a blessed holiday.