The Long, and Last, Goodbyes

Last Easter

I look at these pictures and the first thing I notice is his smile. He was so happy that day.

Eight months later, he would be gone.

But this day… was the happiest I had seen him in years.

His dementia had progressed so much that it was really challenging for mom to travel with him or take him out of the house much anymore. He was weak and unstable. And unable – or unwilling – to follow directions to the point it taxed mom beyond her capacity.

We had decided to spend what could quite possibly be one last Easter in Somerset, an honor to our tradition. And, to visit Memaw.

We didn’t know how much time we had left with her. (You never really know, do you?) She had received her cancer diagnosis in December, and, at 88, after opting out of the more aggressive treatments, the reality was, she may only have weeks left on this earth.  

Mom was convinced she would not be able to take Dad to church, as nothing in Memaw’s house was accessible for their needs. It broke my heart for them. She couldn’t bathe him because the shower on the first floor was not walk-in. He couldn’t climb the stairs to get to the other baths – not that it would have mattered, they were inaccessible as well.

By Sunday, he would be covered in two-and-a-half days’ worth of soiled diaper residue.

But something shifted in her overnight, and Mom woke up determined that morning. Before I had even made my way down to the first floor, she had him up and sponge-bathed. She asked me to go into his closet upstairs, still filled with all his clothes they left behind when they moved in with us – frozen remnants of his past life – and pick an outfit.

I picked a pair of my dead brother’s slacks we had saved – my Daddy was too thin for his own. A nice belt. A crisp dress shirt – my Dad always kept his things meticulously pressed and in tidy organized rows. And some slip-on leather dress shoes.

Mom combed back his hair, taming his salt-and-pepper curls into place, and he looked remarkable. A glimmer of my former Daddy.

Mom was dripping in sweat, but feeling accomplished, and rushed to get herself ready in white pants and a colorful, pastel top.

They were running a bit behind, so we drove separately. The service started and they still hadn’t joined us in our pew. I spent most of the hour looking behind me every so often searching the small sanctuary for them.      

After it was over, I found them in the back, surrounded by a small crowd of old friends who were shaking Dad’s hand and talking at him. His eyes were welling over and his smile was fixed brightly on his face. Even without words to respond to them, it was evident he was soaking in what would, most likely, be his final goodbyes with these people who had had a significant role in the last decade of his life.

His polished attire had been replaced. He was wearing sweatpants and a stretched out pull-over. Mom was in jeans and a borrowed, navy-colored shirt of my Memaw’s. I gave her a “what happened?” look.

She told me on their way out the door, Dad had a bowel movement. By the time mom got him changed while standing in the garage, every single piece of his clothing – even his shoes – and hers, was contaminated. She had to strip them both down and start over. But they still made it.

Having just recently graduated from the world of infant and toddler diapers myself, I well-understood this course of events. But it’s hard to put into words the way it makes you feel knowing your father is the one helplessly diapered and messing himself.

I was so proud of my mom’s determination. For not just giving up and throwing in the towel. No one would have blamed her. Jesus would not have been disappointed in her for letting the poop accident win that day. But my heart swelled with this beautiful moment she was giving him.

I watched him stand with the preacher. This man who had walked beside our family through everything we had endured the last five years – my brother’s suicide, my Dad’s progression, my Memaw’s diagnosis. He had worked and served and led alongside my father before the dementia started stealing pieces of him from us all. He had seen him at his best, and now, his worst-to-date.

A piece of my heart held Pastor Dave’s grief as well in that exchange, as I pondered what all was going through his mind and memory.

In a profession so broutinely accustomed to treading with people through their end-of-days, I wondered how numb you become to it? Or, when it’s this close to you, does it still hurt like it does the rest of us?

I studied my mom in these moments. I wondered if she knew this was his goodbye as well?

We ate lunch back at Memaw’s and got on the road for home shortly thereafter. Three hours north, but a world away.

This was the last picture I took with my grandmother. The last time I would see my grandmother upright. The next time I would see her she would be lying pale and contorted, mostly unconscious, in a hospital bed, on the last day of her life.

My mind still reals to see her so “normal” on this day – on her feet, milling and working around, and so “healthy looking”. Knowing how quickly she would deteriorate from here.  

I pulled these pictures out again today and did the math:

In two short months, my Memaw would be dead.

Six months after that, my Daddy would be also.   

Standing in my Memaw’s again this year on Easter (we haven’t yet let the house go), I was reminded how much life has changed in such a short time.

These days, whenever I feel tired, sad, unmotivated, or just “off”, and I want to shame or over-analyze myself, I have to keep remembering, it’s been less than a year since I lost two exceptionally significant parts of my life. Forever. And I remind my brain to be patient and full of grace with my heart one more time.

I haven’t talked much about what living – and grieving – a dementia loss is like. The anticipatory grief, the settling for what you have left of them over and over, the hypervigilance it throws your nervous system into…

There was so much else to carry and process these last five years, surviving the weight of every day was the best I could do. I’ll likely be unpacking some of this grief here over the coming months.

If you are familiar with this kind of loss, my heart aches for you. But I’m glad you made it here. I see you. <3