When grief is different

How do we process the death of a parent that doesn’t fall into the normal categories of grief? One that doesn’t leave holes in our daily routines. Who’s silence is louder than the emotions we are struggling to process.

Dad didn’t live at home, a few years ago his MS played tricks on us. It took control of his brain and away went the man we knew. He was easy to anger, spoke absolute gibberish in between hallucinations and found superhuman strength to defy everyone trying to help him. Mama Kools (with the help of some magnificent PSWs) had been looking after him at home for over a year, 24 hours of needs, 7 days a week. He required a lift system to get out of his hospital bed, assistance with bathing, with daily activities. He couldn’t get out of the first level of our house without the entire family putting in the effort to make it happen. We had our Dad at home with us for as long as we could manage, until his mind up and left his body behind.

I still remember it like it was yesterday, a PSW he had known for a while came into the house and he was startled, scared and clinging to his hospital bed. Dad was sitting there but in his mind, he was in the war. He honest to goodness thought he was a warplane pilot. The dogs barking had him shaking, thinking it was bombs exploding, the telephone rang and he demanded to know what the message was. We called 911 and the paramedics took him away and that was the last time he called this place home.

He was a drunk four year old. This has become the best way I have been able to describe his actions. Mama and I spent 14 hours at his bedside in the hospital (my sister was away at school) where he played “itsy bitsy spider” up the doctors arm, ripped railings off hospital beds, had moments where he thought he was fishing and told us stories in foreign languages. He was admitted to Hamilton General and became the guy that the nurses dreaded tending to. He wasn’t himself, he was angry, out of it, and barely able to carry on a conversation. He needed to be restrained to the bed on multiple occasions for emotional outbursts that were unlike anything we’d seen before and he told very convincing (albeit, never true) stories to anyone who would listen.

He was transferred to a hospital closer to home, was investigated for anything possible that could be causing his state of mind, medications were quadruple checked, doctors were perplexed and eventually with a shrug of everyone’s shoulders the answer became “it’s the MS.”

Anyone who knew Dad knows that the MS never held him back from anything for long and slowly but surely we got his mind back. He had snippets of memories from those months of psychosis but he was left mostly with the deep fear that his brain would go to that place again. What he didn’t get back, was the ability to live at home with his family. It was a mutual decision while he was in the hospital that his quality of life would be better in a home where he could get around in his wheelchair, sit at a dinner table, have the 24/7 care he needed and aspects of freedom he couldn’t have at home with us.

Guilt riddled all of us. How do you cope with continuing to live your life while your husband/father sits with people, some more than twice his age, unable to carry on conversations, his, a mind that now comprehends while this is what’s best, it’s not ideal.

Over time though, that place became his home, the PSWs and nurses became his best friends and instead of being his caregivers, Mama and Rae and I, we became somewhat of a normal family again. We visited without having to change his bedding and could watch TV with him without having to help him use the washroom. We still brought him home for long weekends and rented wheelchair accessible vans to take him out for dinner and to family events. We weren’t perfect, but we were us.

Now, I have told you all this because when someone dies and they aren’t imbedded into your daily routines, grief is different. I don’t wake up missing the smell of his morning coffee or hearing him chuckle at the Sunday comics. We don’t miss the way his footsteps (hypothetical, stay with me here) creaked along the familiar stairs on his way to bed at night. His death isn’t staring us in the face when we BBQ, or when we set the table minus a space.

His absence, while so painful I don’t wish it on anyone, didn’t come all at once. It doesn’t hit us each morning with the silence in the spaces he used to fill with memories of his routine or in the way he’d tell the worst jokes over dinner. Instead it comes in waves, aggressive, when we least expect it. It comes when I’ve had a bad day and want to hear his voice on the other end of the phone. Or when I drive by the street that leads to his where he made his new home. It comes when I see other people in wheelchairs or when any sort of Dallas Cowboys fandom crosses my path.

It’s been nearly a year since he couldn’t fight anymore and left us here on earth but it somehow feels like yesterday. I’m not forced to feel his void, in my habits, in the way I move around the house on a regular basis. Instead, he lingers in my mind, I find myself redirecting my thoughts and ignoring the emotions trying to push their way in. I swallow the tears and do life until the pain of his absence paralyzed me with tears and rips through my soul like the day it happened.

I don’t think there’s a lesser evil, I can’t imagine his absence being engrained in everything I try and accomplish in a day but this is awful too. This ability to try move throughout life as though it’s normal until reality comes knocking and reminds me that he’s gone and then all those emotions I’ve ignored bring me to my knees in heartache.

There’s no right way to grieve, no timeline, no check list or do’s and don’ts. All we have is grief in the form of the memories of the love we shared and the knowledge that we have to keep moving forward even when it feels like everything is standing still. If I can impart you with any sort of takeaway it’s this;

No one knows the love in your heart better than you do. Which means no one can measure your pain or put a timestamp on your healing. No one has the right to tell you that you’re emotions are misplaced or that your grief is too consuming. You are the only one who knows your heartache so you, right now, are exactly where you should be in your healing process. Whether you are forced to face it every single day or it hits you when you least expect it. Take the pressure off yourself that you need to feel whole or as healed as the person you’re looking at and just let yourself grieve, feel, exist.