Postby Rainykatie » Fri May 18, 2018 1:32 pm
Dear lovemyameliasky,
I am so touched by your post and by your loving thoughts on this incredibly tough topic that I just have to comment. I feel that I might have some perspective to offer, and I hope what I have to say is helpful. I just was the caregiver for my mom through her cancer process (also diagnosed with Stage IV, and it rapidly spread everywhere- bones, spine, ovaries, etc etc). She lived for 8 months with me and was in hospice in my home where she passed peacefully with us by her side. I also have young children. They weren't at home the day she passed, but they experienced the dying process a bit.
The whole experience changed me and in a way, less fearful of death. I admit as a caregiver I initially was completely terrified for the months leading up to my mom's death. Mostly terrified of the unknown- I had never been through this and our culture is so taboo about death even though it is something we all go through. I did make sure to tell my mom anything I needed to while we could still have conversations. This is important because as the final days near, the dying person enters a different state of consciousness and you can't be certain when this will happen. My mom knew she was going on a journey. She was looking for her plane tickets, for her luggage. I assured her that I had all those things and that everything was set. Your caregivers should know you might begin to live in a different place before you go, and that they should not try to bring you back and rather experience it with you.
I am not a person of religious faith myself, but I was struck by the deeply spiritual nature of the death experience and it has changed me into a spiritual person. Never have I been so touched by such sorrow and such beauty at the same time. Having just gone through labor with your dear precious daughter, your family will recognize that there are such striking similarities between birth and death. Both are a process that the person goes through, both are difficult journeys for souls to travel, and both are part of a beautiful cycle of life.
In the weeks before my mom passed, the rhododendron bush outside her window bloomed, just the side of the bush that she could see. It was December. Her last sight was of a hummingbird visiting the rhododendron flowers. I told her a hummingbird was there, and she turned to look, smiled, and then closed her eyes for the last time and slipped into the active dying process. This is the most sorrowful but beautiful experience I have ever had. It was as if she was expecting the hummingbird's arrival, and she could go now that she had arrived. And while it is really, really, really, hard for family members to go through this, at the same time I wouldn't have had it any way. Your loved ones care so much for you, they will be honored to care for you during your passing, too.
The hospice care was incredible. I never knew that there was a whole fleet of people out there working in hospice and they restored my faith in humanity, just knowing that these angels are out there. They lovingly took care of my mom and our family during her final days. They came at all hours if we asked. They bathed her while she was going through the dying process. They hugged me, they assured me that we were doing everything right. They gave us as much support as we needed. I know they will support your family too during this challenging and spiritual time.
I live in Oregon, a "death with dignity" state, and my mom had originally planned to do that route as she hated the idea of suffering or having us suffer too in caring for her. But, it didn't work out for a number of reasons. The main reason is that it happened rather fast and the death with dignity prescription requires the patient to drink a large amount of liquid- something that is really tough to do toward the end of a battle with cancer. If this is a route that you want to go, it is important to get the process started early enough and may require you to go before you are completely ready since you must feel well enough to do this. This isn't something they tell you early on, we discovered. In hindsight, that would have been equally rough on our family so doing a natural death and hospice was really the right thing, for us.
So, what can your family to do help prepare? I think educating themselves about the dying process and what it looks like is a great idea. There are a lot of great resources out there and at first it is really tough to read, but I felt better being prepared. Lots of times caregivers can get frustrated trying to make a hospice patient eat or drink, when that isn't what they need right now. There are also different stages of dying that it is helpful to learn to recognize so they know how to respond.
Make sure they have enough support, if possible it is good to have multiple adults around so that people can take turns caring for you and keeping vigil when the active dying process started. There were 3 of us - my mom's partner, my brother, and I- and we could take shifts sitting with my mom those last few days so we had opportunities to sleep. Yes it was an often agonizing experience but it was also a special time for our family and we all feel closer now and bonded in our love for my mom, which I know would make my mom happy if she knew. However, at the same time, you don't want to have people there whose presence may not be constructive or who make more work for your loved ones. It's a balance.
I love the idea of writing letters, especially to your daughter. I know she will treasure them deeply throughout her life. I keep looking throughout my mom's stuff for something she left behind for me, but she was in denial of her death for a long time and didn't think of that.
I thank you for posting and for giving us the opportunity to share in your beautiful life and story. I hope that my comments about death aren't too troubling, my intent was to share the spiritual nature of my mom's peaceful death and to let you know that while it is hard for families, it is also an incredibly loving and special time.
All my love to you and your dear family,
Katie
Caregiver to my mom (73)
Dx Stage IV w/ liver, bone mets 4/14/17
Folfox started 4/25/17 - 8 rounds
Took a 6 week break to check some things off the bucket list - great response from chemo - everything shrunk and liver tumors virtually gone
CT scan 9/2017 showed spread to ovaries- laparoscopic surgery at MSK
Resumed Folfox 10/23/17 - 1 round
Surgery to remove primary tumor due to discomfort, 11/7/17. Trouble with recovery, numerous mets to abdomen area found
Passed 12/5/17