As mentioned in my previous post, there are limited articles on the interwebs about spousal caregiving. Occasional articles, to be sure… usually conglomerations of various caregivers’ thoughts on their situations. I imagine this is because we don’t have the time or energy to sit down and do this. Conglomerations are easier. We each offer a 2 second sound byte that someone else can massage into something cohesive and rational. We can also delete the ‘I can’t do this anymore’ sound bytes which, some days, is all most of us can manage.
There’s another reason: we feel and think one thousand things that we aren’t allowed to give voice to. We all feel these things. We all think these things. If you can read through a list on The Mighty and nod at nearly every quote on that bulleted list, it’s not because you coincidentally resonate with one person. It’s because there are things about spousal caregiving that are fundamentally common. Our silence is only the tip of the iceberg.
Why are we silent?
1. We prize the privacy and reputation of our spouse.
If you are a spousal caregiver, you’ve likely been through some messy moments. And by messy I mean disgusting and vile moments that somehow didn’t faze you. You’re not sure how that happened, but it did; they are moments that will happen again, and you’ll muddle through like you did the first three times.
We could turn these into anecdotes. Some of them are funny in hindsight, but between-me-and-my-spouse funny, not between-me-and-twelve-drinking-buddies funny. There is a shield of privacy we raise around our spouses and its maintenance is sacred. If we do need to speak about these things, we adopt medical terms to depersonalize experiences. We have nurse friends who allow us to ask questions about certain physical problems we’re seeing that we can’t just share with anyone without exposing the privacy of our spouse.
Those with chronic illness and chronic pain will always always put on a façade of ‘okayness’, and it is our duty to support that. To hold the shield of privacy up when they are too tired. And often? That shield is wrapped in silence.
2. We are exhausted.
I know. You are, too. Everyone is, I think. It’s a badge we wear these days. “You’re tired? I’m exhausted.” Spousal caregivers are exhausted. For those of us who married healthy spouses, we married into a team. We made agreements on roles and chores and we helped each other out. We were helpers fit for each other.
For some, that spirit of camaraderie and teamwork slipped away gradually. We slowly took on more and more tasks. We became breadwinners and caregivers and medical researchers. We took on everything that used to be shared and shouldered it ourselves. There are never enough hours in the day, and we usually feel like we’re doing this wrong… not being a good enough caregiver, breadwinner, housekeeper, spouse.
We just want to lay it all down at times. We want to run away and find a room where we can sleep for three straight days, even though sleep would be elusive. We would worry and hover over phone or text, feeling deeply guilty for leaving our spouse behind and being so selfish.
Everything is flux and chaos, and we cannot get ahead of it no matter how we try. I have been 3 weeks behind for more than two years.
3. The ongoing loss is overwhelming.
For those of us who married healthy spouses, we did so with dreams and expectations. We lived a certain life. Len, for example, loved golf, tennis, roller blading, hiking and camping. We were going to save for a Mediterranean cruise one day… perhaps for our 15th anniversary. We dreamed of buying an RV trailer and driving all over North America when we retired. We dreamed of kids and grandkids and a full, active life. Our dreams didn’t feel excessive or overly indulgent. They were just the dreams of two people excited to have a beautiful life together.
Golf was taken first; tennis shortly after. As the pain increased, the energy required for hiking and rollerblading was too much. We clung to our love of camping for a year too long, and that’s gone now too. Flights are viciously brutal, so the Mediterranean will always be as far away as it is. Driving is excruciating for more than half an hour, so we won’t be seeing all of North America like we planned.
I watch people on family fall hikes on sunny Sunday afternoons and pain stabs through me. I want nothing more than to hike with my best friend. Just a simple hike. That’s all I want…
He can’t work anymore. He has to walk with a cane now, and the use of his leg continues to slip away. There are days when I don’t see him. I leave for work before he’s awake and come home to him in bed. There are stretches when he is in such a fog that he is barely present, and it’s like he’s not even there.
I miss him. He’s right beside me at moments but I miss him with an ache so fierce and wrenching that it tears me in two. I am torn wholly and completely in two. I want so badly for his suffering to be over. I want my husband back. I want our life and our dreams to stop slipping away from us. I get angry and sad and miserable and bitter and frustrated at how utterly useless and powerless I am.
My pastor once said that it’s like an ongoing funeral, and he’s right. There is no closure. There are goodbyes and goodbyes, dying dream after dying dream. And it hurts.
4. We battle shame and guilt.
He feels like a burden. I feel powerless and inadequate and brutally selfish. He feels like he’s ruining my life and I feel like I’m not enough to make his better. We occasionally find ways to address these feelings, but often we can’t hear each other. We know in our heart of hearts that our feelings aren’t truth; that our love for each other is greater than the shame and guilt but the words often ring false like some prosaic platitude at a graveside.
We are powerless and ashamed. He cannot wake up tomorrow and be well and provide for and care for me like he vowed to do on our wedding day. I cannot find the answers or cure to heal him, and the ongoing sting of failure inherent in that is crippling. We love each other deeply and desperately wish we could do it better. We cannot. The burden in that is heavy.
There aren’t many articles on spousal caregiving. Why? No one wants to write this. No one wants to read this. Even composing this post I’ve felt I’m committing a gross betrayal. I won’t post without Len’s permission, of course, so if you’re actually able to read this, it’s because we both took a deep breath and agreed to be more honest than we want to be.
Typically I end a post with a bright ray of faith-filled sunshine so that you can walk away from reading this feeling calm and settled. Not today. I’m leaving this here, open and unresolved. I’m inviting you into the mud. I’m inviting you sit, like Job’s friends, in silence. If I am not the only spousal caregiver in your life, I’m inviting you to read this over again for as many of your friends who are walking this road. Read it for each one. Settle into the mud for each one.
It’s what we need. It’s dark here some days. We need you.