the process

I wrote this blog a week ago. My mom has since died, very peacefully. I decided to post it today as I feel stronger today than when it was written.

My mother is dying. Probably today, maybe tomorrow. We've been preparing for her death for a couple of days now. It wasn't expected; she's 70. She wasn't particularly healthy, though, as she has Alzheimer's disease but that usually (and cruelly, in my opinion) doesn't limit life span by much. So we've been thrown into the death process, trying to navigate so many new things: funeral services, cremation or burial, death certificates, writing an obituary, changing property deeds, changing bank accounts, cancelling credit cards, and many other things that we don't even know we need to organize or do, yet.

It's a process we know nothing about. Thankfully my mom was very, very organized and yet still we feel quite unsure. In palliative care we were given a brochure which has been surprisingly helpful. I hate brochures because I've never found them useful - always too general and wordy, but this one I like. In some ways it's nicer to focus on the "to do" list of death, rather than the death itself.

I've been sitting by her side for a few days with my brother and Dad. My mom can't speak or open her eyes but my brother, Dad and I have been been talking, crying, laughing and running through "what if" and "what would she want" scenarios. It has actually been a good time - stopping time to just sit and talk with people you love, with no start or end time, has nourished by my soul.

Navigating the "process" of death has gotten me thinking about the process of infertility. Those of us in the middle of infertility care know it really well. We write brochures and give public talks and explain it as best we can, but we already know it, so we don't have the perspective of someone outside of infertility. Just like the palliative care nurse looks at me when I ask "who fills out the death certificate," we look at patients when they ask "how do I start treatment?" The answer is obvious to those who work in death, or in infertility, but to those of us outside those worlds, it's not.

People outside of medical processes just don't know where to even begin. Once or twice a month I get an email that reads like this "you helped me get pregnant with my daughter, so I have your email address. Would you mind seeing my best friend _____ who has been trying for 2 years to get pregnant but doesn't know where to start?" I like those emails because they mean (1) I got someone pregnant (2) someone trusts me to help a friend. They are often quite easy too: I get a bit of basic information from the friend by email which can guide which tests are appropriate and then tell them to get a referral. In BC to see a specialist physician, like an infertility specialist, you need a referral from a family physician. Sure, you can self-refer but the government is clamping down on self-pay referrals and may not cover the cost of testing (which can be hundreds of dollars), so it is ALWAYS best to see a family physician for a referral.

Anyway, the process is: get a referral to see an infertility specialist at a clinic like ours. You'll wait a few days or maybe even 2-3 weeks to hear back from one of our patient care coordinators (PCC). The wait is frustrating. They will contact you and organize the testing: blood, HSG x-ray, sperm test, etc. as appropriate AND they will book you an appointment a couple of months later to see the infertility specialist. They will also email you some basic fertility information so you are optimizing your time while you do your testing and are waiting to see the physician. Once you see a physician you will get a plan to get pregnant. I promise you it is never fast enough, after all you wanted to be pregnant months or years ago but we will work as fast as your menstrual cycle, test results, hormone levels will allow.

Still not sure what to do? Ask us.

Yesterday the palliative care nurse told me the same thing. I asked her where I would find a wash cloth for Mom and she said "leave that to me‰Û_ we are here to help you. Ask us and we'll help." I mentioned to the social worker that I was going to go home to grab a blanket for Mom's legs and she said "let me" and she got a beautiful blanket a hospice volunteer had crocheted. I think being in a big, busy, anonymous world where the culture is to praise those who are most self-sufficient, we don't ask for help. We are proud of our independence somehow, but sometimes we need help to get started or to have someone just help carry the heavy load.

I am deeply grateful to the physicians and nurses who are caring for my mom. They are helping my family beyond words. Because they helped us understand the logistics of the death process we can focus on the meaningful parts of death.

I now need to figure out a meaningful way to thank them. My mom would have made jam and cookies and written a beautiful thank you note. Perhaps that is how I will too.