It’s no secret I haven’t been writing this year. Since getting my first diary in 1989, I’ve not written this little.
It’s humbling to watch someone you love decline and them be equally aware of how hard it is to believe what’s happening. What’s happening? Shaky hands, forgetting who is around and what’s physically possible like standing, dressing yourself, body not communicating with spirit and the dance of humility and grace. My step-mama will stop mid-task and look up at me to say, “isn’t this weird?”
Navigating a wheel chair, learning when to step back, being patient and restraining yourself from “helping” was what this week looked like.
After midnight is when she decides to assert her independence the most and takes inventory of what’s in the fridge and freezer. She can’t be alone because she may fall in her attempts to stand. She knows it’s hard to not step in and thanks me for it. I let her do her thing for anywhere close to an hour so my dad can rest and then put her to bed which takes another 30 minutes or so. Everything takes longer than you plan. Taking a shower is a luxury for everyone, especially a long hot one. It’s like having a newborn, a toddler, a fire to put out and all changing minute to minute.
Having kept things on hold after my mom was given less than a year to live, when we reached 16 months I was given a hard push to get back to living my life.
I evaluated my goals with work, my academic goals for my own personal means and more than anything found myself declining invites to attend births, dinners, parties, concerts and traveling. I just didn’t know what to plan for and what my family needed. Would she survive? Would my dad need me to move in for awhile?
This month, we were told she may have only three weeks to live and it will be three weeks this Tuesday.
Trying to decide how much time to take off of work now to be with her or to help with the funeral is the strangest conversation in my head. It’s just unclear what the timeline is.
When expecting parents are given a due date, the birth team knows to be available three weeks before and after. You’re on call, you’re fully engaged and willing to throw all plans out the window for what’s best each moment, then you’re changing diapers, you’re up all hours and again, you throw out all plans for what’s pressing, for a nap or taking a phone call to the advice nurse. It’s the same coming into this world as it is going out it seems.
There are random moments of quiet to reflect, things are left half done and with the delusions it’s hard to swallow the shouts and confusion. When I catch my breath I yearn to know the difference between giving up and giving in, between letting go and surrendering.
Today my parents finally met with hospice and talk about the reality of what’s going on after a week of no sleep and really bad days.
It’s not lost on me that do this with and for a lawyer who used to run a home health care business is surreal.
Luckily, today was a good day for my stepmom but that meant that there was more of a fight to not give up and ask for help.
Note to self from Self: Preparing is not giving up. Acknowledging the decline is not being negative, it’s being wisely proactive.
Can you imagine being 47 years old and having little to no motor function after being an Iron Man athlete? My mom is stubborn, never gives up and always presents a solution if addressing a problem. The only towel she throws is a terrible one when the Steelers win points.
What does it look like to be positive, believe anything is possible with a good attitude when you have an inoperable brain tumor and things are getting bleak?
With little sleep, little time and lots of love, I can say this- the difference between giving up and letting go is patience, kindness and compassion for yourself and those around you.
There can be peace or fear in realizing that we don’t have control ultimately, and what we do have control over (being able to get up, speech, behavior, our bodily functions, thoughts, choices, beliefs) is subject to change. Babies don’t see poop or having to be carried as bad, they don’t judge these things nor themselves. Pride and grace are what we fight for as we leave our body and the awkward slow dance of requesting assistance is a massive part of the process.
Being a participant in what’s happening rather than fighting it is key. Fighting for yourself can look like fighting the world and reality but giving your best has a different quality, surrender is the ingredient.
I believe there is no blanketed clause or cure-all approach. Every person, situation and moment is unique which makes it even more complex to know what’s right.
What worked this afternoon in the kitchen didn’t work at 3am on the bathroom floor last night. Surrendering to each moment keeps me sane, knowing all things must pass and knowing I’m supported to do what’s right, to be here now is The Serenity Prayer in action.
Be Here NOW is not simply the title of a book or something to put on a t-shirt but a practice.
What I love about right now is that in Liza’s delusions she hasn’t lost her humor. What I love about right now is that when you need to cry you can be left alone. What I love about right now is if they need me, I’m here. What I love about right now is practicing being here right now and that everything I’ve learned as a doula, a yogi, a friend, a business woman, a student, a teacher, a daughter is serving me today, tonight and tomorrow.
In honor of my stepmom’s favorite album of all time…