Don’t Text your Siblings that your Mother Just Passed Away…

and other lessons learned managing my mom’s end of life care

I’ve heard new parents describe bringing a life into the world as a magical, scary, and meaningful experience. I’m here to say that helping a parent’s life exit the world is a sacred, terrifying, and life changing experience. Look, no one wants this role, but eventually you will be forced to play a part. You can hide until it slaps you in face and punches you in the gut; or you can embrace it, plan for it, and design the experience within the constraints of the cards you’re dealt. My experience was a mix of punches of in the gut, sacred moments, and knee slapping good times.

On Dec. 15, 2015 my mom entered a multi-week cascade of events that nearly took her life. On Dec. 24 we brought her home from the hospital on hospice, not certain if she’d see the new year. By Dec. 26 she was off hospice and back on palliative care, because she was fighting to live, and we rallied to support her. On Dec 31, I flew home to celebrate the New Year with my spouse in Boston, only to return two weeks later to see mom through a doctor visit for a second opinion. Thus started a nine-month journey of commuting between Boston and Pittsburgh to help care for my mom. We had clearly entered her final journey, with absolutely no idea how long it would last! After a roller-coaster of a summer, on Sept. 6, 2016 my mom passed away.

Hey, let’s relive the experience of mom’s end-of-life care!

It’s only a few weeks since she passed and I’m feeling the need to write about it. Upon sharing this need, a friend said, “You might as well stab yourself in the eye!”

Well, here goes!

I’m the kind of person who dives into the middle of a mess and eventually muddles her way out of it. Let’s face it, emotions trump logic for many of us, and most of us are not trained, nor have any prior experience in end-of-life scenarios. The experience is a lot like launching a new product. It’s messy, emotional, moving quickly, and the stakes are high. In this case, death literally hangs in the wings waiting for a bad decision.

The lesson’s I’ve learned are the following, in ranked order:

  1. First put the oxygen mask on yourself, then take care of the others.
  2. Your parent’s definition of acceptable and unacceptable provides the lens for all decisions.
  3. The medical ecosystem is a complex morass in need of reinvention.
  4. Family dynamics can fuck with you. That’s why items 1, 2 and 3 are ranked first.

First put the oxygen mask on yourself, then take care of the others.

Seeing your loved one, particularly a parent, in pain or dying right before your eyes, day after day, is an extreme experience. At the same time, the last thing a parent wants is for their children to have to care for them. They can be incredibly stubborn with their care, or lack of it, and you may have to lean in to enact critical changes. It’s an extremely vulnerable time, and they need to feel safe, secure and cared for.

It’s likely your parent will feel like a burden. You can confirm that concern with your behavior by being miserable around them, or you can embrace the role and help them feel loved and thankful for your cheerful presence. I embraced it, pushed past my pain and entered a sacred place of what I imagine Buddhists mean by lovingkindness. My siblings didn’t and became more miserable, and believe me, mom knew it! Anytime I felt the need to throw a personal pity-party, a voice in my head reminded me that she was knowingly facing death. My problem dwarfed in comparison. I snapped out of it and boldly rejoined her side.

It’s an exhausting haul with no idea when or how it will end. You need to care for all aspects of your life. You’ll be physically, emotionally and mentally exhausted. If you’re in a relationship, you will be tested. Your job will be at risk. And when your primary conversation with your parent is whether they pooped today, you need friends to reintroduce you to normalcy.

If your parents are pushing 60 or older, put on the oxygen mask and start preparing. When the shit hits the fan, there is no “tomorrow” — it’s NOW and it’s faster than your startup’s high performing agile team. 2-week sprints? Ha! Try 2-minute drills in unanticipated moments at any time of the day or night with life literally in the balance!

Scared? Yep, it’s scary. Now try being them, how the heck do you think they feel? Consider this: it’s your last chance to honor them by being the adult who can provide the safe nest for them to die in. This view radically changed my perspective. I stopped being the child, and became a valiant protector of ‘the nest’.

To help get there, try a ‘projection’ and ‘back cast’ exercise. Project forward and imagine writing the obituary. Now back cast and ask yourself how you want to feel about your role in their journey. Go deep in your heart and decide what you are willing to live with once they are gone. Decide how far you are willing to, or need to go, and commit.

To mentally prepare, consider meditating on the transience of life. I found Pema Chodron’s book “Comfortable with Uncertainty” a helpful tool for meditating on accepting “what is.” To ease in gently on the parent angle, try reading Roz Chast’s book titled “Can’t We Talk about Something More Pleasant?” You’ll be able to laugh through her story while gaining glimpses into your future.

Your parent’s definition of acceptable and unacceptable is the lens for all decisions.

Few people want to talk about their ‘end of days’. Let’s face it — the questions in a living will are morbid! We were blessed by parents who made sure everyone knew their wishes. Not because they were great estate planners, but because they were seasoned parents who didn’t want their children and their spouses fighting at their death bed! Make sure you know their answers to those questions! When faced with a decision, you’ll need to rely on knowing what they want. The answers to those questions helped us navigate some situations, enabling us to confidently choose a route that was in line with what she wanted without a fight! Having a reliable medical professional, not directly involved in her care, to help me understand the consequences of each choice was a huge help.

The best gift was knowing what mom viewed as acceptable and unacceptable outcomes. Atul Gawande wrote about this in his book “Being Mortal.” Beyond wanting to stay home, and not go into an institution, mom never directly answered my questions. Instead I had to watch, observe, and ask oblique questions. Eventually I came to realize that she was boldly and quietly facing her death, and to her, acceptable was a ‘normal day’ at home. Unacceptable involved talking about her condition, doctors, hospitals, and being unable to care for herself. Her rule was simple: We were all to play along that everything was fine, and let’s just get on with living while we’re able to live! We were not to talk about her health. What we were to do was just have coffee, watch the birds, play cards, tell stories, or bowl on the Wii gaming console. However, when her health trended to an emergency, each time (until her last) she changed her mind and we were off to get the care she needed. Get to know your parents at this level, and you’ll feel better about the medical choices you need to make. The key is to honor their wishes and not your own.

A time comes when you stop giving them what they want, and have to give them what they need. If you’ve achieved a close and trusting relationship, this transition can occur smoothly. My mom was independent and strong willed. Changing her routine didn’t come easy and there were many negotiations to be had. When mom could no longer live home alone, we hired an aide to be in the house to assist and entertain her. On the first day mom kicked her out, yelling “And don’t come back!” In the final days of her life, mom came to rely on that aide to confess her regrets and voice her concerns about her children. The day before she died, the aide tells me mom asked “Where have you been all this time?” And followed that with “We could have been a hoot together.” It wasn’t what she wanted, but it was what she needed, and we’re thankful to have stayed the course.

This also frees your time to connect as adults on a whole new level. Some of my most meaningful experiences were incredibly simple, fun moments between the two of us, such as eating a forbidden treat like two schoolgirls in the playground, or conspiring on a caper that had us in stitches. Take the day I surprised her with a motorized wheelchair. My mom never learned to drive a car, but at the age of 87, 15 days before she died, she was performing 3-point turns in her living room, and backing up between two chairs to “park.” These moments matter enormously in keeping your spirits up. At some point I’ll publish the ‘great cheesecake caper’ — a story of conspiracy, theft, gluttony and mystery. We took a drat of a day and turned it into something funny, and when you’re facing death, that’s a helluva good thing.

The medical ecosystem is a complex morass in need of reinvention

Holy shit, what to say about this cluster? You are on your own to assemble the team of medical practitioners, medical equipment providers, and extended care-givers. The amount of ball dropping between providers was jaw-dropping and had us running on empty. The complexity in finding a doctor who views your parent as a viable human being deserving of dignified health care is a full-time job on it’s own. My mom believed in “Marcus Welby” and the reality of specialists just plain confused and irritated her. If your parents don’t have ’the team’ this is an area to start working on. I can tell nightmare stories of how my mom was caught in what I consider a crooked medical group. This group took a ‘C.Y.A’ approach to her care, managed to ‘rule out’ a lot of things, and never made a diagnosis, nor improved her care. They did however, successfully perform a “wallet biopsy”, extracting as much money as they could out of her Medicare benefits. Again, having a reliable medical professional, not directly involved in their care can give you perspective so you can make the right choice.

Add decisions around choosing a medical equipment provider and learning how to use these things, such as life-depending oxygen tanks, and your head blows up. We encountered a horrible usability issue with an oxygen tank that caused my mom to pass out and emotionally wounded the sibling that accidentally did it to her.

Next, layer in the agencies offering in-home care as part of their Medicare benefits, and the additional private-paid aides needed to supplement your own family members. And of course, you need to cover the legal angle with the estate plan, power of attorney for health, and for finances.

If you have an analytical family member who is good at spreadsheets and evaluating products, give them the task of assessing providers. Then find the ‘program manager’ in your family to take charge of the calling, screening, arranging and schedule managing. Know who you are dealing with before you let them near your loved one.

Oh, and yes, some aides steal. We ended up with 5–6 different care takers coming in and out of the house. We lost a few things without knowing who was stealing. You need help, so get over it. Remove everything of monetary and sentimental value and let go of the rest. When your parents pass you’ll be happy an aide stole that knick knack that no one else wants — it’s one less thing for the ‘estate sale.’

Family dynamics can f- you up. That’s why items 1, 2 and 3 are ranked first

Let’s face it, these are your parents we’re talking about. All of those childhood behaviors and jealousies come right to the surface creating a whole new layer of joy and tension into the mix. We had moments where we each stepped in and did what we were good at, and it worked out beautifully. In the end though, the eldest felt the need to assert authority even though they were the least qualified to do so. I’m the youngest and in the end was treated that way, regardless of the time, expertise, and money spent helping to keep her stable and home.

The text I received the morning my mom died…

Yes, I was notified that my mom passed away by a text. I took a screen capture of it, along with my utterly numb response.

Are you fucking kidding me? I’m not an f-bomb fan but, come on! After 9 months of managing her medical care, flying back and forth to Pittsburgh while you were nowhere to be found, you tell me with a TEXT? No, we’re not speaking, I’m just going public with your asinine behavior. So there.

As I said, your inner child comes out and any unsettled and buried childhood emotion, rift, or dynamic comes rising to the surface. At the same time, I created strong new relationships with members of my family and extended family. I made up with a sister who treated me horribly in childhood. I connected with a niece who said “I’ve been waiting for you for my entire life” as we got know each other better. No, I was here first, waiting for you! Three cousins who had been through this with their own parents, stepped forward and wrapped their love around me in a such a beautiful way, they helped carry me through the good and hard times. A sister-in-law connected me with her sister who helped me understand what to expect of hospice care. Surprises surface in unexpected ways, embrace them when they appear!

Try to get 1, 2, and 3 above in place, so you can behave like the person you’ve grown into, and not the child that you were.

The last nine months have changed me. I am more open and more loving than I ever imagined I could be. I am also committed doing something to help others through this important time, even if it’s just sharing my stories. I took a lot of notes, and drew a lot of pictures, and have a lot of processing to do! So put on your oxygen mask and watch this space.

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