The In Between. Waiting for a loved one to die.

the In Between

I’m waiting for my mother-in-law to die. Spoiler alert – try not to allow your brain to go to the socially joked about cliché. My mother-in-law Alice is one of my dearest friends and I am by no means looking forward to a world without her in it. That being stated, I am an autistic woman who was her own mothers care giver for the last years of her life and held her in her arms whilst she passed. I was on the phone with my aunt who lived in Victoria B.C. when she passed. Held my father 13 years prior when he passed. I have lost so many dear to me in the past 10 years, both the human and furry variety, I have literally (autistic here – so I mean LITERALLY) lost count. Although I hesitate to call Death my friend, we have come to be quite familiar with one another with each passing. I do not fear Death myself, because although I have zero idea what comes after, I have long ago surrendered to not worrying about it for myself as even if I did know, I have no control over it. Death simply IS. Whether due to my autistic brain or simply my character, I choose as much as possible, to place my energy in the present. And presently, I am about to lose my friend and my husband is about to lose the first of his parents (I will do my best to avoid delving into the unfairness I feel that my husband is 12 years my senior and has not lost a parent yet, as that is it’s only lengthy rant that does not have a home here).

I am, like my husband and all of his family, stuck in the In Between. That pensive space where you know something is coming of which you have zero control, zero instructions on what you can expect, and a shit ton of emotion swirling around in a deranged vortex by multiple humans who each have an individual way of processing loss, with no safe space to scream. Added in for myself, is I am not actual blood family, I am a spectator. A spectator, who is along for the ride. I can offer support. I can offer a shoulder or a hug when needed. Tomorrow I will sit bedside for the day so others can have a much-needed break. I can listen and if asked, I can suggest, but that is where my role ends. Now I by no means wish to diminish the importance of that role, or the honor that comes with it. It is simply a new experience for me to be in this place and be watching from the periphery. My strongest desire is that my friends passing is as painless as possible for her, followed by a close second that my husband feels supported and loved, whilst he navigates unfamiliar territory. I am grateful for the ability to write and share, as that is my portal of release for all of the swirling emotions that I am currently experiencing. I will place my disclaimer here; this share will not be for everyone. I am autistic and with that comes a bluntness, or lack of filter that many could feel triggered by. It is ok to close this piece off and never finish it, because I will not hold back on what I am experiencing and it will not only be about my dear friend, but an amalgamation of all the times I have been trapped in this space. If nothing else, please read that again. From here forward is about the In Between, not a particular individual. It is an exploration of the feelings that have arisen over time, and I am sharing them because they might be relatable. No adult will escape some version of this experience, but they will survive it.

Let’s start with Anger.

We are all familiar with the word, but let’s take a moment and get reacquainted. Per Google A.I. anger is an emotion characterized by the tension and hostility arising from frustration, real or imagined injury by another, or perceived injustice. Although I am loathe to admit A.I. has its advantages, I think this is a great launching pad definition wise for my purpose. Anger will show up for us when grieving whether we want to admit it or not. I say this because as a female (taught that anger is unfeminine) and living in a society that has become so ravaged with anger, I think sometimes we are afraid to remember it is still simply a word that defines how one is feeling at a particular moment and in fact has a place at the table. When a loved one is ravaged by cancer, dementia or any of the diseases we whisper when speaking of, it pisses us off. As it should. It isn’t fair. The worst parts will be different all but trust me there are many. The lengthy process that can feel never ending trying to fight the disease with all our supposed medical advances, prayers and wholistic practices we can throw at it. Finding out your loved ones and friends have different opinions on what they feel is appropriate and the continual unsolicited advice being thrown at you, even when you beg them to stop. The throwing of those things by you to another because the feelings of helplessness are so intense it at times feels like the only way to “help” and that brief glimmer of delusion that your advice might aid anyone is the tiny thread holding you together. Not understanding for some who have lived such beautiful and calm lives in service to others with nothing but kindness and love and having to reconcile that their decency was not enough to spare them their fate. I could go on for pages with examples, but instead I will end with the one I loathe the most and have experienced every god damned time, wishing they would just die. Not only because their suffering is too much to bear, but because you are so tired of waiting and desperately want that breathe of oxygen that is no longer tainted by impending grief. Of course, that one is then followed by its second cousin who gets drunk at weddings and gropes their cousins, and everyone is embarrassed by: shame. Another visitor, I guarantee who will make an uninvited appearance, no matter how much you try and distract yourself.

Like anger, whether we choose to admit it or not, we are all familiar with Shame. Despite all the TED talks, therapy and crystal alignment, shame is still a huge part of what we are all taught through guilt or manipulation, by our families (who learned it from theirs), our culture, who relies on it to keep capitalism thriving, women in line and men feeling less than if God forbid, they don’t fit the old school ideals that despite all of our evolution is still jammed down their throats whether we want to admit it or not. It isn’t enough that we must feel all the grief and anger at ourselves and distorted thoughts that have taken root in our minds as we often are afraid to say it out loud to anyone, now we need to feel bad about that too.

How dare we…

Shame is to my mind the single most dangerous emotion still lurking in the closet needing some love, next to fear. Yet it persists. Unclear on what shame really is? Oxford Languages sums it up well, “a painful feeling of humiliation or distress caused by the consciousness of wrong or foolish behavior.” I share this definition because it hits the nail on the head “consciousness of wrong or foolish behavior.” In regard to suffering through the loss of a loved one, who was the asshole who started the belief that feeling a multitude of emotions whilst losing someone they care for should be judged by another? I don’t care what God you believe in, or if you choose not to. I guarantee you it was thousands of years ago, and someone felt shitty about their own emotions and instead of processing them, used it as a tool when they saw another experiencing it, to make themselves feel better, or not alone. As a human being it is one of our worst traits, instead of trying to understand, we compare in an attempt to feel safe. Rather than admit “wow, I felt that way too, let’s talk about it so we can better understand it and not feel alone” we hide behind our culture or tradition and pass the shitty baggage along.

As a side note I can openly admit that one of the most freeing moments I have ever experienced in my life is when I sought out a therapist in the last year of my mom’s life and opened our first session with “I want my mom to die.” When that therapist smiled at me and said, “I am so happy you are able to say that out loud” the invisible weight that had been suffocating every breath I took lost some of its power. I will not lie and say my guilt, shame and horror I had been telling myself I deserved to feel disappeared right away. It took months. But, being able to talk openly about all that was attacking my brain (and that is exactly what it feels like) was actually healthy for me to be feeling as I was trying to navigate a grief journey that had been going on over 6 years at that point (my mom had been diagnosed with Interstitial Pulmonary Fibrosis one week before I was married and knowing my mom’s lungs were actively solidifying/choking her out sucked to say the least). Of course, once you (hopefully) navigate the anger and shame with some success (acceptance), then you get to sit with the emotion I believe the prior two are born from; FEAR.

Fear is such a fucking asshole because fear doesn’t like to stay in its own lane. We NEED fear as human beings to survive. Fear keeps us from walking into dangerous situations, from eating rogue donuts left out on the curb tempting us with their deliciousness having NO IDEA where they came from, dancing in literal fires ravaging the hills and swimming with alligators. Fear is one of the most important emotions for us to have a healthy relationship with as without – we would perish – quickly. As I mentioned however, fear is in fact an asshole. Or to be fair, we as humans have yet to respect and honor it for its true purpose and use it as the basis for things we do not understand, which let’s be honest rarely works out well. Perhaps the human race has simply not evolved enough yet to use it properly and one day it will be a non-issue. I am confident this will not be in my lifetime, however. Now this is where I find autism acts for me personally as an occasional superpower. Yes, I do still grapple with fear at times. However, because my operating system is wired the way it is and I have an unquenchable desire to understand things, my dissection of situations does come in handy. After I got my diagnosis only 2 years ago, I have giggled many times looking back at things in my life that by all accounts should have scared me. However, because I had over analyzed and broken them down to their tiniest parts, I was able to see the fear and choose to walk through it before it morphed into something else. I understand intellectually why many people fear death and the unknown if it all. But I can’t feel it the same way others do because it doesn’t make sense to me. I mean, none of us can literally “know” what happens after death. Obviously, it is impossible. So my brain figures “well, it’s gonna happen at some point so I guess we will find out then.” To clarify here let me acknowledge however that although I don’t fear death, I do fear a painful death – totally different thing.

For many however, no matter how strong their faith, a fear of death is a reality and there is no solution for that other that to offer support and be there for those we love. Another moment of honesty here, that can also be a really scary part. Hoping we are capable of showing our love in such a way that brings comfort to those we love, both alive and dying, as they both need and deserve what we can give. The only advice on that I can give to anyone who asks, is do your best. Try not to be afraid and focus on the love and friendship that has been a significant part of your life and lean into that. I think the best thing anyone suffering can hope to hear is “how can I support you?” It acknowledges their pain, that you see them and that you care, but in fact don’t have all the answers. Embracing our vulnerability here and sharing it with another human being can be our strongest weapon in the battle and it is a battle; you are not imagining that. People have a tendency to repeat behaviors that feel good. Being vulnerable isn’t just a gift of comfort, it’s a permission slip for them to feel safe doing the same. Now I realize all of these things so far are painful, but the In Between space holds the potential for some pretty awesome moments as well, because the In Between forces people out of their comfort zones and that can remind you of things you may have forgotten or haven’t ever noticed. Those moments I like to file under Moments of Hope.

Moments of Hope of course will be vastly different for every human being. The sheer volume of differences in family and friendship structures are unique, cultural differences are vast, and of course it will depend on how much we are able to pay attention. For ease of my trying to explain this one I will share a handful of moments I have been experiencing over the last few days, as for me they have brought some much needed smiles, some private (well not for long) moments of downright giggling, and moments of surprise and delight. Small disclaimers insert here as well; although my husband and I have been married 9 years (2^nd marriage for us both), almost 11 years together, outside of his mom, I do not know his family very well. The kids are grown and have lives of their own ( I feel I know them well from stories my husband shares with me going back to when they were born), his brothers both live relatively close, but other than holidays, my husband does not have what I would define as “close” relationships with them, so my interactions with them have been limited and of course the nieces, cousins, etc. I get the joy of seeing them on Thanksgiving, but rarely beyond that. So, I have a mélange of limited interactions mixed with autistic intensity of observation. Due to the circumstances of communication being absolutely critical, there has been an increase of interaction and information sharing, accompanied by more transparent conversations on how they are dealing with the situation. Last night as my husband set to work to locate all of the official paperwork he has been entrusted with at his desk area, I found myself literally digging through our storage unit for our go-bag that got stuck in there after my mom’s passing, my fear being that the aforementioned paperwork was still in there and it would be so like my husband I to have to go on the scavenger hunt to locate it, prior to its being needed. I literally had to stop looking at one point with my flashlight as I got laughing so hard at how at our age, we can still be so discombobulated on the location of anything outside of art supplies. I did my best to keep my mother’s voice out of my head lecturing to me on how being organized would have saved the headache. My husband texting me that he couldn’t find and my reminding him to look at the boxes UNDER his desk and 3 minutes later getting a “found it” text. My husband’s children have made it over to make sure they were able to say goodbye whilst she was still able. My heart literally swelled when I found out the youngest of the nieces, her youngest grandchild is flying back from the UK to say goodbye and is she is the one who reminds me so much of my dear friend in the looks category it seems extra special to me. Tomorrow I will get the entire day to sit by her side and read to her and just “be” with her with no “next thing on my list.” Hospice has been brought in and as always reminds me that angels do in fact exist on Earth and my gratitude is incalculable. She is in her own bed and not stuck in a hospital somewhere, which she would hate. She undoubtedly will be snuggled under a pile of blankets, the top one with the faces of all of her grandchildren on it, acting as a protective cocoon. Even the ability to say goodbye during the In Between is something so many of are robbed of by accidents or unforeseen tragedies.

You see that is the part of the In Between that is easy to ignore. The opportunity it holds. The gift in the nightmare is the chance to say goodbye and to come together as a family to be vulnerable and share in both the love and frustrations that are felt so you are reminded you are not alone. I could fill a book with the memories I will always have of the conversations she and I have shared over the past 10+ years. Her listening and never shying away from a conversation about death as I lost so many dear to me and she allowed me to cry without feeling stupid. I will have a handful of memories she confided in me with that I will hold as treasures and take to the grave myself, because she trusted me with them. I know in my heart from our recent visits that she is ready to go reunite with her mama in heaven and no longer suffer the illnesses that plagued her so painfully the last few months, making her daily existence so uncomfortable. That of course is really the part of the In Between, that is what makes it so hard. As the one who is suffering is finally released from their pain, leaving us behind, we are left to process ours, and that is where the fear waits, and we must remind ourselves that we will survive, despite no longer having that shoulder we once leaned to remind us that everything will in fact be ok.