Into hospice

Shannon and I moved back to the Village today, but this time for hospice care. Here’s today’s letter to my family:

Dear family,

I’m sorry, but this will have to be another quick note. We’re in the village now, Shannon’s IV machines have been turned off, and we’re moving forward with courage and resolve. At least she has the courage and resolve. I’m full of trepidation, but I’m moving forward with her nonetheless.

We had a fantastic day with Katie, Mia, and Mark. We also had a wonderful visit from Candy, which was truly appreciated and touching.

I had to make some difficult but essential phone calls today. I’ve started the arrangements for the disposition of Shannon’s body. There are some papers to sign and fax and then things will be arranged. We’re working on other plans for the near future as well. Shannon is a bit reluctant to want us to hold a funeral. She’s kind of hoping to say her goodbyes to family and other loved ones over the next week or two and then just be allowed to move forward without too much fanfare. We have the tremendous blessing of having this time to be together with family and share love with Shannon while she’s still with us, so I’m inclined to agree with her that it might be nicer to expend our mutual efforts on being together now and including Shannon. I’m frankly worried that family members will feel hurt or offended if we choose not to hold a service. I’d be very grateful to receive honest opinions.

Shannon’s health is maintaining. We were really worried that moving into hospice care would mean that we would be denied some of the things we consider necessary to keep her free from undue suffering, such as frequent blood transfusions. We were told blood transfusions weren’t a service regularly provided in hospice care, but they checked with their home office and have agreed to do that for us. So we’re at peace with the decision we’ve made to terminate most care and focus on keeping her comfortable and happy.

I don’t think I have anything else meaningful to add to yesterday’s note. The need for Shannon to be freed from her malfunctioning body is evident to everyone who comes to visit us, and I’m convinced that it is helping each of us to gain peace and acceptance of our own. Of course that peace is accompanied by numerous tears and a wrenching sadness. But it will get better. As I think I mentioned yesterday, in the meantime, we’re together, our children have started arriving and adding light to our lives, and we feel surrounded by love.

In many ways, I’ve come to see this hospital and its grounds as a sacred place. We spent most of 2013 here, experiencing joy and sorrow in never-ending waves, and always doing it together. There was time to rest and reflect and just to be together. Everywhere I look, everywhere I go here at the City of Hope, I see things we saw together, things we did together, places we walked hand-in-hand, and challenges we faced together. I can’t feel sad about being here because my memories of the place are so sweet.

I’ve become worried that I’ll forget the sound of Shannon’s voice. I don’t think I have any audio or video recordings, so I’m going to make some tomorrow. I’m going to get each of the kids and myself together with her and just take videos of ourselves talking and enjoying being together. I wish I’d done it in happier times, but this will have to do. I just can’t bear the thought of forgetting.

And we need to snuggle now and sleep. Many thanks to everyone for everything, as always. We love each one of you and feel your support.



P.S. We appreciated the kind note from Karen and Will (among many others we’ve received), and will get them added to this mailing list tomorrow. Sorry I wasn’t able to get to it today. Busy day as we made the transition to hospice care.

Leave a Reply