Funeral Planning

The Dancing Queen has been in hospice for over six years now. Four or five years ago, the hospice team made us plan her funeral. We had to find a funeral home, talk to them, start saving quotes, music, pictures, but after a month or so, it was done. We moved on. The arrangements were made.

Fast forward to now. DQ is no longer attending school as she is too weak. She is very tired often. So much has been stolen from her; from all of us. We are savoring every minute because it always seems very close to the last. Yet, she holds on, smiles, has fun. It seems like she will be with us forever. This teeter-totter of misery and happiness is really difficult to live with. There is no true planning and much of our time is spent concentrating on the now because that is all we have.

This past spring, as we were beginning homebound life, the "new" hospice social worker (not new for years now, but not the same one we were working with in the beginning) came to the Mad Scientist and I to discuss end of life decisions. We've moved beyond do not resuscitate orders and who to call in case of emergency. No, now was the time for true end of life decisions and what happens next.

We had to read a book on how to respond to things that sound incongruous coming from a dying person's mouth, but make sense to them. We had to think about life differently and help DQ know it is safe for her to move on; for her to die. We had to assure her (and still have to assure her daily) that our love will last for all time, but that doesn't mean she has to stay here with us or continue to endure simply for our sanity. Because, now, she fears death not because of the unknown, but because of what her death will do to those of us left behind. All of the while, we also have to no lose hope and continue to bring life because the end may still be several years away. The balancing act, the fear, the intense conversations, all of it has been just as emotionally draining as those moments in the emergency room or ICU, where I watched her come millimeters from death. The difference now is that we've been living in this intensity for months now without repreive.

After the book and discussions, we had to share our funeral plans with the new social worker. Our "plans" were nothing more than ideas. So, we had to actually plan DQ's funeral. Now that TRex is a teenager and DQ a full-on tween, they also had to be involved. Talk about emotional.

On a Thursday evening in May, my sweet husband had to take TRex to the funeral home where his sister will be laid out. Then, a month later, we had to take DQ to the funeral home because she HAD to see where she would be going. She needed to instruct us on where to place her stuffed animals, how she wanted the chairs arranged, and approve the room where the hospice team will work with DQ's friends on their grief. To say that those evenings were hard is an understatement. The funeral director, owner of the funeral home, who grew up with the funeral home, had to excuse himself when he broke down into tears meeting with Izzy.

That was just the start of the summer. I've had to plan who will be called upon DQ's death. I had to begin an obituary. Caters had to be called, budgets created, email lists created so notifications will be easy to send. DQ was insistent on the email list and she has already threatened that she will be mad at me for the next two realms of her life if I forget to attach the link to her obituary in the email giving notice to everyone (DQ has decided that she does not believe in the Christian heaven, nor in the returning to what we were before birth version of life MS and I believe as anesthetists; she believes in magic and that she has lived for all time in different realms and that when she dies from this non-magic realm, she will jump to another realm where there is magic and she will be queen).

I've had to go through photos to create a slide show for DQ's funeral. DQ and I (probably with the help of TRex and MS) will then pick the pictures to be blown up large to be displayed in the funeral home. We've contacted my florist cousin about getting blue roses as DQ desires. I have several messages out to balloon companies seeking ideas and quotes for blue balloons at a funeral.

I am making tags for DQ's stuffed animals. She wants us to bring all of her stuffed animals to the funeral so that her friends and family can take one home and care for it after she is gone. She is also making teddy bears with her Ma to give to people to remember her.

I created the start of a bookmark to be available at the funeral home for those who come (akin to prayer cards, but not religious). I can't, however, get myself to work on draft program or the outline of the service. We have discussed the service. Decisions have been made. I have songs that must be played. DQ wants to make a video to be played, but I haven't been able to work myself up to completing that project yet. And I can't get myself to think about the actual service.

In the beginning, I set a deadline of August 1 to finish all of the drafts. I've done a lot, but there are a lot more things to go. I'm sure I have completed much more than our social worker expected. I also know that it will only get harder to finish these tasks the longer I wait. The entire purpose of starting now is because each day everything is harder.

How can this be my life? How am I still standing when I feel like every part of my being crumpled in ash on the floor?