Hi friends. Rolf here. I’m breaking my silence on the blog to report that we initiated home hospice care for Trish this week. As she chronicled here, life was getting progressively more difficult as her body shut down. For several weeks now, she has been largely confined to bed and it was getting increasingly more difficult to breathe while sitting up even briefly. Early this week it became challenging to breathe even while reclining. While the CPAP was initially intended for respite, she now needs it constantly.
As much as we knew this was coming, it’s certainly an adjustment. Trish has long held that she wants to stay home and we want that for her as well. Hospice allows us to do that. It’s been scary. Hard to imagine how cruel it has to be for someone so super-competent to be completely dependent on others and so unable to communicate with them.
In the larger sense, hospice is simply a change in the entity that’s managing Trish’s care–which has always been dictated by her physical condition. ALS really isn’t one of those diseases that you can fight. You just have to deal with it. And this is where it’s brought us. As foreboding as the term is, hospice is just the introduction of new team members who specialize in this stage. While this week involves newness, the hospice team values continuity. The cadre of caring friends that is caring for Trish will continue to be present but there will be more guidance for a process none of us are readily familiar with. The immediate encouragement is a focus on keeping Trish comfortable and we are learning to make good use of the bag of pharmaceutical candy they’ve introduced to that end.
Can’t really promise when the next update will come but as we appreciate all those following the journey, I wanted to make sure you were aware of this new development. So grateful for your love and prayer for Trish and our family.