Updated August 6, 2017

Making A Roadmap

I try to share something that would be helpful to you in my blog posts. Something about communication, “behavior” management, planning ahead, making the decision to move to memory care, medications, what have you.

For me, sifting through experiences is a way to somehow make sense of what can often feel inexplicable. It’s a way to try to construct a road map for you. A way of saying, “I’m sorry you got diverted on this path, too. Here are the landmines I’ve marked. I hope it helps you avoid them.”

Other times, I’ve noticed an unexpected oasis. I try to share those, too. A travelogue of sorts.

One year ago today, my dad died. His death was the most traumatic thing I’ve ever been through; the next most traumatic thing was witnessing his cardiac arrest 19 years before that. Much like the experience of loving someone living with dementia, these are the type of experiences I’d never wish on anyone.

My “travelogue” today isn’t dementia-specific, but rather about the end of life. Right now, these are the bits that stick out the most.


No One Wants To Tell You

Professionals hate to deliver bad news. What appears obvious to a professional may not to you, resulting in a big disconnect. You may need to ask them to spell it out to you in plain English.

Dad was running errands and texting me the afternoon of August 26th. Mom called 911 that night. The next night, my brother, sister, brother-in-law and I were sitting in a private family room with Mom, having a conversation with the doctor–by our request.

It was almost like the medical team (who were working their buns off doing everything they could) thought we should have figured out what was happening on our own.

Because of the way it was explained to us during this conversation, we were–ludicrously, in retrospect–asking about dialysis and surgery and finally, hospice, before the doctor ever uttered the words “hours” regarding life expectancy. We were horrified when we understood, both at the imminent outcome and the fact that we hadn’t understood earlier.

I wish I knew the “fix” to this one, but I don’t. I hate to think how it would’ve gone had we not asked for the meeting, and had we not known the right questions to ask.

As a professional, I also get it. I’ve been on the other side of the conversation, where I was the one who had to tell the family Alzheimer’s is a chronic, progressive, incurable, terminal disease. I’ve cringed inside every single time. No one wants to be the person uttering words that shatter a family.


Acute Grief Is A Thing

Three days of bereavement leave from work is nonsense. Acute grief is closer to three months, meaning that’s about how long is takes before feeling like you can “pass” in (short) social situations.

Actual length of time depends on you, your relationship with your loved one, any unresolved issues in the relationship, the manner of death, and more. In other words, it depends. But 72 hours isn’t even close to cutting it. That’s not bereavement leave; that’s shock leave.

Best thing I heard? “What’s the kindest, most loving thing you can do for yourself in this moment? Now, do it,” courtesy of my friend Georgena Eggleston of Beyond Your Grief. She’s full of wisdom and healing tools.

One of the kindest, most loving things I did for myself was seeing Georgena for treatment. (I wrote a bit about the experience here.)

And it causes memory loss(!)

We lost track of how many times we repeated ourselves, or said, “Did I already say that?” In the immediate aftermath, most everything was surreal, of course. But the cognitive loss lasts for some time, as it’s tied to the grief. Don’t be alarmed; it’s normal.

Here’s the other really important thing to know about this: anticipatory grief causes memory loss, too.


Not Everyone Has A Self-Editing Feature

Some people will leave you dumbstruck. I was kind of shocked at this. A nurse, who had offered wonderful care, kept telling us “he’s in a better place now” after Dad died.

If you, the bereaved, make that pronouncement, that’s fine. But no one else gets to be so presumptuous as to tell you that. Ditto “It was God’s plan,” “Everything happens for a reason,” and similar inane bullshit.

One otherwise highly intelligent and highly empathetic family member said a whole bunch of stuff I remember finding offensive at the time. Silver lining there? I don’t remember any of it, other than thinking, “Why is she saying that?! What’s wrong with her?”

A different family member, apparently mistaking me for a reporter covering breaking news, called to (literally) yell at me for not calling her to keep her updated as events unfolded.

Two of my mom’s so-called friends wanted to know everything that happened, in detail. A great response to that is the Ann Landers classic, “Why do you ask?” They also had the inexplicable nerve to let Mom know how she should have handled the fast-moving, emotionally devastating situation and aftermath. What delightful friends, right?


Good Stuff Can Still Happen

Other people will amaze you with their awesomeness. I got cards and texts and voicemails from people I never would’ve thought would do that.

My dad’s oldest sister was a second mom to him, and he was close enough in age to her four kids to be like an older brother rather than an uncle. All four cousins enveloped me in love, nonstop. They made a safe cocoon for me.

My youngest cousin was the first I was able to reach with the bad news, and she immediately lost it when I rushed out the words. She just sobbed, then apologized for doing it. Her doing that was one of the biggest gifts I was given. Here was another person, thousands of miles away, who understood, viscerally, that the fabric of the universe had just been altered, and not in a good way. I didn’t need to explain it to her. She got it. What a gift!

Michael was (and is) my rock. My bestie called. And called and called and kept calling. She didn’t care when I made no sense. She listened to great, gulping, snot-flying sobs; she left concerned messages; she left lame joke messages; she texted silly memes. Bless her.

You won’t feel this bad forever.

Believing that requires a major leap of faith. A leap over the Grand Canyon-size chasm between what you know intellectually and what you feel. Again, I point you toward Georgena. Read her latest (short) post and then take a good, long look at her picture. Nothing short of miraculous, right?

You’ll get (at least) one gift.

I didn’t know this until a few years ago, when I’d just lost a client I served as guardian. Two different friends asked me if I’d discovered my gift yet. I had no idea what they were talking about.

Both explained that the departing soul leaves a gift–something that can’t otherwise be explained, some kind of divine intervention, some type of gift. They added I’d just “know” when I got it.

I could write pages about this, but let me just say this: yes, it’s true. My two uncles delivered mine, and I believe I was instrumental in delivering theirs. The gift is one of the most profoundly moving (and loving) experiences you’ll have after losing a loved one.

YOU are a gift.

Small gestures, comments, and encouragements that don’t seem like a big deal to you actually make a difference in someone else’s life. We were blessed to hear a steady stream of recollections about my dad’s impact on people’s lives. We weren’t surprised, but he would’ve been stunned. He never recognized the true measure of his impact.

You make a difference for your loved one living with dementia every day, and in countless other ways you’re not even aware of. If ever you’re feeling low, just remember how important you are, what a contribution you’re making to others. And thank you for sharing your gift.


What about you? If you’ve been through this before, I’d love to know your experience. Were there unexpected things? Stuff you wish someone had told you to expect?

Christy Turner is the founder of DementiaSherpa.com (CTC Dementia Care Management) and has enjoyed the privilege of working with over 1,100 people living with dementia and their families. Follow on Facebook, Google+, Instagram, Pinterest, Twitter, and YouTube. Content varies across platforms.