Burial Clothing and Hospice (Two super fun topics)

Yesterday we started looking at the clothing I will be wearing for my burial. Did I just say that out loud to my phone? I'm saying a lot of weird things out loud lately. What we should be saying out loud is talking about packing lists and preparing for fun trips we want to go on.

In our church, those who have been through the temple, or "received their endowments," wear their white temple clothing when they're buried. I haven't worn the white temple dress my mother made for me many years ago in several years because it hasn't fit. (You can rent dresses at the temple.) Since I've lost 25-30 pounds in the last 6 months since my diagnosis I fit my dress better. But actually, it doesn't really have to fit at all. I remember my mother saying that when you dress a deceased body, you can just cut the back of the dress open and lay the front of the dress over the person. So, all that really needs to fit are the sleeves. We tried a sleeve on my arm that doesn't mind moving, and it fit just fine. We haven't cut the back of the dress yet, otherwise the dress and other symbolic religious clothing are ready to go. The person who is allowed to dress the deceased endowed person would be an endowed spouse, or endowed people of the same gender as the deceased. In other words, my husband, daughter, and good friend of the family who is female, all of whom are temple endowed, will be doing this sweet and sacred service for me. I helped dress a deceased endowed sister once a couple of years ago, and it really was a special experience. It was someone I had never met before but I took part due to my church responsibility at the time. The woman's family was there to watch us modestly and tenderly dress her in her sacred temple clothing.

Sunday was decent and Monday was an especially good day pain wise. I'm so thankful for that.

Friday and Saturday were rough, though, so I had a call in to the palliative care team to talk about the next step up in pain management. We spoke this morning, and I am raising one of my opiates starting today. I will also raise my laxative, because opiates can affect you that way. And when you have pain in your back you don't want any extra straining in the bathroom.

Each time we chat, palliative care asks if I would like to try hospice. We always resist. This time I didn't resist. The thing about hospice care is they can be much more hands on, and closely and more immediately monitor pain. She also said that as the disease progresses, pain can just go out of control suddenly. They've seen it many times. We weren't aware this could happen. When and if that happens, you'll want hospice to already be in place, especially if you find yourself in a state where you can't take drugs orally. They can administer medications to you in other ways. Palliative is going to go ahead and put the referral in, and hospice will probably call me today or tomorrow to get things rolling. She also recommended that I try it for at least 2 weeks to see if I like it. It's not a one way ticket. I can revoke the service at any time.

A few minutes after we hung up with palliative care, Michael could see I was once again suddenly in tears. I told him I had the feeling of dread that I had 24 years ago when I was going to give birth to our son. There was something difficult looming that I had to go through, and there was no way around it. This process will be a little more unknown than the birth process. I had been through birth giving once before. But this, I don't know whether it will be long and drawn out, or if there will be a sudden event to save me from having to taper all the way down to zero. I just know it's there in front of me, and I have to walk through it whatever form it takes.

Michael is an expert comforter, and we were able to have another sweet and tender exchange. He is facing so much right now, and yet every molecule of his being is helping to comfort me, not himself.

I have heard from various survivors that their deceased loved ones have found ways to show little signs that they are near. Of course I want to find ways to do this, too, to comfort my loved ones and show them that I am nearby and happy. Michael says he will be looking for the signs, and maybe even making them up in his head if needed. ;)