Hospice, A Paradigm Shift, Palliative Care.
Hospice is very strange. It is a reversal of all the training I had in nursing school. My training taught me how to help people get well. My first thoughts go to prevention, intervention and treatment.
Last night Mom had brushed her teeth, washed her face, and donned her nightgown as usual. As I was tucking her into bed, she asked if she could have a piece of cake. She hadn’t eaten much earlier in the day. My immediate thought was, you can’t, you just brushed your teeth. My second thought was, if you’re going to have a snack, it needs to be something nutritious. Then I realized none of it mattered. At this point I’m not worried about cavities, nor am I worried about a “healthy” diet. She’s dying, so if she wants cake at 10:30 PM, why shouldn’t she have it?
I didn’t have cake but I had peach cobbler which was cake-like, so I reheated it, scooped a dollop of ice cream on top and fed it to her. She perched on the edge of her bed like a baby bird, opening her mouth as I spooned in the dessert. She kept saying, ” Umm. This is really good.” Then she went to bed and slept through the night.
I spent years authorizing and facilitating Hospice for other people but I realize now, I had no idea what I was actually arranging. I know the benefits, I know how to set it up but I don’t know how to receive it. I wasn’t prepared for the barrage of phone calls and visitors. We’ve had two RN visits with a third planned for today. We’ve had equipment and medications delivered. Today we had a visit from a social worker and tomorrow a chaplain is coming by. I can’t remember anyone’s name at this point. I’ve met with and discussed details of our family life I would rarely discuss with close friends, let alone strangers. To date since Mom’s hospitalization I’ve met with eight people and have at least two more to come.
I’m not sure if it’s just my peculiarity or if it’s “normal”, whatever “normal” is, but in every conversation about death and arrangements, our daughter’s death floats through the front of my mind. Everything I hear I filter through that experience. It brings up all the emotions that surrounded that time, though not with the same intensity. I guess it is my only other experience of being responsible for the arrangements surrounding a death, so maybe it’s not surprising, but it makes me sad. I haven’t cried yet. I feel like I want to, or need to but there’s no time and no privacy. I may need to watch a tear-jerker movie.
I’m not sure how long this journey will be. I know there will be bumps along the way and I’m already tired. Monday’s are usually my relax and recover from the weekend days as soon as the caregiver gets here but today it started with phone calls and hasn’t stopped. I hope once the first intake hoopla is over, things will calm down a bit.
Hopefully, relating my experiences will be of some help to some of you facing similar experiences. I’ll admit I don’t know what to expect but I’ll be honest about what happens. Thanks for riding along with me.
Have a good caregiving day,