My Grief

Nearly ten weeks have passed, and grief is complex. It feels like living in a house after its most important piece of furniture is gone. Everything else remains – the rooms, the windows, the dishes, the yard, the laundry, the calendar – but the whole place feels different now. I am still myself. I look the same in the mirror. My voice, shoe size and music preferences haven’t changed. But I walk through these familiar hallways, and something is different. The weight I carry has shifted. Grief is heavy.

Grief is sadness. It is longing. It is shock. It is so many things I thought I was prepared for due to the very long lead-up to Doug’s death. But I now realize you can never be prepared for grief rising up from an ordinary moment and taking the air with it.

Doug is gone, and that sentence is still too large to take in all at once. I say the words and understand them. I can organize papers around it, make phone calls, and answer people because of it. But understanding is not the same as absorbing. My body seems to know before my mind does. I am often tired, but tired is not quite the word. Tired sounds like sleep might fix it. This is deeper than that. This is internal; the kind of fatigue that lives behind the ribs and in the bones. It wakes up with me and sleeps next to me. It is the exhaustion of years of watching, tending, anticipating, adjusting, losing him by inches, and then losing him all at once.

For years, my coming and going was organized around Doug’s care. His needs gave shape to time. They became the scaffolding of my life and a kind of private prison. I resented parts of it. I wished the care need would end and that Doug would miraculously recover. I longed for freedom with a desperation I could barely admit. But caregiving through dementia also deepened my love for Doug and it gave me a job, a role to inhabit, a reason to keep moving. Now the assignment is over, and I am standing in the strange open space it left behind, unsure what to give myself to. I am suddenly retired and feeling unmoored, bobbing at sea.

Time may be one of the oddest parts of this season. I have time, but I do not always know what time is for. I have space, but I do not always know how to enter it. There are things I could do, things I should do, things I once wanted to do, but I feel uncertain about what matters now. After so many years of being required, desire feels unfamiliar. Choice feels almost too open. I find myself asking small questions that take up more space than they should: What should I do today? What is worth my energy? What will help me heal? What is simply a distraction? What part of me is returning, and what part of me is gone for good?

I cry sometimes. I don’t cry other times. Grief is not obedient; it doesn’t follow a set of rules. Some days, I can speak of Doug plainly, smile at the memory of his antics, and enjoy looking at photos. Some days, I can move through the morning with tea, errands, and exercise and feel almost steady. Then abruptly something small undoes me: an empty chair, a trinket, the wrong kind of silence, the sudden memory of his hand, his face, his hug, the way he belonged in a room without needing to announce himself.

My memories of Doug are rarely with dementia, which feels like a mercy. Dementia narrowed him, stole language, altered our marriage, and made me a witness to a long vanishing. Now, unless I choose to remember those years directly, I remember him whole. I remember the man before the disease. The husband. His presence, competence, humor, and confidence. The person who knew me in ways no one else did. Dementia does not get to be the only keeper of his story. It was part of what happened to him, but it was never the whole of who he was.

So, here I am. I am grieving, but I am also living. That feels important to say, even if I say it softly. I have a couple of simple trips planned and a few events on the calendar I find myself looking forward to. Even getting on an airplane feels like it will be an event all by itself. It has been a while since I packed a bag and stepped into motion to somewhere.

I get outside, enjoy my yard, notice plants, dirt, weather, the practical kindness and intrinsic spirituality of green things. I am grateful it is Spring and not Winter. The yard asks something of me, but not too much. It gives me work I can see and beauty I do not have to explain. I am also exercising, trying to remind my body that it is still here, still mine, still capable of strength after all the bracing.

This is what it feels like to be me right now: emptied and not empty. Tired and still moving. Sad and peaceful. Uncertain and content to be here in the world. I am ten weeks into a life I did not choose, carrying a rooted love that did not end simply because Doug’s body did. Gradually, like a foal finding its legs, I am discovering how to belong to my own days again. Loss moves beside me in its complicated way, reminding me Doug will belong there too—one day at a time.

Karen

Getting Real… Incontinence

How old were you when you learned to use the toilet and understand the need for privacy? Eighteen months? Two years old? Most likely, it was before your third birthday. Using the bathroom becomes such an automatic part of daily life that we rarely think about it—until something changes. Yet, the process of maintaining lavatory hygiene and safety is surprisingly complex, physiologically and emotionally. Watching those abilities unravel in an adult is heartbreaking.

Incontinence is a common challenge in dementia and elder care. My mom lived with complete incontinence for several years before she passed. While she often made it to the bathroom in time, there were instances when she didn’t or struggled once she got there. She wore incontinence products day and night, and eventually, we covered her favorite chairs and mattress with washable pads—affectionately dubbed “Grammy Pads.”

Mom had many accidents. Some we noticed right away, others we discovered later. As her caregiver in her final years, managing her incontinence was a continuous responsibility, growing more demanding as she became increasingly frail. It was hard work, both physically and emotionally. And it was part of caring for her with dignity and love.

Doug has remained mostly continent so far, which I’m incredibly grateful for, as incontinence is considerably more common at this late stage of dementia. He has occasional leaks and mishaps that require extra laundry and cleanups, but not frequently enough to necessitate full-time incontinence products.

During the day, his caregiver and I follow a bathroom schedule, taking him to the toilet and assisting him in sitting to ensure success. A bed alarm alerts me at night when he stirs, signaling that he needs to get up. I wake up with him and guide him to the bathroom. It’s a very tender time. I am glad to do it. Getting him up and reducing his liquid intake in the evening hours have effectively prevented accidents—until recently.

Keeping Doug clean and dry requires just as much effort as managing full-time incontinence but in a different way. With complete incontinence, as I experienced with my mom, care revolves around using and changing incontinence products, strategically placing protective pads, and frequently doing laundry. With Doug, the focus has been on timing—getting him to the toilet when he needs to go (or when the schedule says so) and ensuring he sits safely for cleanliness and comfort. So far, this approach has helped minimize his incontinence.

However, Grammy Pads have once again found a place in our home, carefully positioned on the furniture Doug uses most—just in case. His ability to stay dry could suddenly change. So, I focus on preserving and supporting his continence as long as possible. That’s the core of my caregiving approach: prioritizing prevention instead of reacting after the fact.

As I write this, night-time accidents are becoming more frequent, most often in the bathroom itself. With the help of the bed alarm, we usually manage to get there in time but holding it until he’s undressed and seated has become another matter. Perhaps just seeing the toilet triggers the release. The look on his face tells me he is bothered that his shrinking brain is hijacking his long-ago toddler training. My heart aches for him while I clean him up and settle him back into bed. The bedside commode is imminent.

Dementia caregiving is a journey of continually letting go of things that once felt essential. With each decision, I weigh what truly matters against what I long for. One thing I know for certain—Doug would never choose this for himself. So, I do my best to set aside frustration, resist the urge to push my agenda on him or sigh in exasperation, and instead seek to treasure him as my sweet, gentle-spirited Doug.

I feel time slipping away. I won’t pretend I’m not weary. The truth is, I’m exhausted. I miss Doug and the life we once shared—every single day. And yet, I still have pieces of him. He still smiles, sometimes laughs, and always tries his best. I still snuggle close, cradle his face in my hands, wrap him in hugs, and run my fingers through his hair.

Every time I decide to be grateful, seeing new things to be grateful for becomes easier. Same with love, acceptance, and calm. So, despite the heartache of all that is unraveling—each new dementia symptom, every decline, and every demand placed upon me, I try to face my fatigue and angst, quiet my longing for what was, and embrace what remains with acceptance, calm, and love one day at a time. Someday, these will be the moments I long for.

Karen

Paper Boat Feelings

If you wake up feeling fragile, remember that God is not, and then trust Him to be everything you need today. ~C.S. Lewis

When giving birth to my first, well into the transition stage of labor, the final stage before the baby’s birth, I exclaimed to the attending nurse, “Give me drugs; I can’t do this anymore!” It wasn’t long after my undoing; we were saying hello to our daughter, completely smitten, the distress behind me. I now understand the luxury of epidurals and that my desperate demand is a very common plea bargain in the final moments before delivery. I’ve been told that when the mom-to-be exclaims she can’t do it anymore, the nurses know delivery is near.

I see a therapist. It is by far the best piece of self-care I’ve invested in. Better than a warm bath, a scented candle, or time by myself. We have talked many times as I traverse this undulated dementia terrain about my feelings and my response to them. We have discussed how feelings, like paper boats, float past my view, valid and sincere, delicate and fleeting, big and small, drifting along with the current, vulnerable to the winds and waves of my experiences. Feelings are tricky. They are true, neither correct nor incorrect, good nor bad. They are valid as personal, subjective experiences that reflect my inner state at any moment. They just are and can change on a whim.

I am learning that recognizing and accepting my feelings helps me better understand myself and navigate my emotions in a healthier way. They don’t need to be justified (although I do that often); they need to be acknowledged. I am less fragile when I am patient with my feelings, allowing them to be as they are, void of harsh judgment, self-criticism, or correction, and laced with encouragement and tolerance. Harsh anything, on top of impatience, often renders me fragile. Very fragile.

Our summer ended with a family camp beach trip. There were 19 of us under one roof for three sleeps. At the risk of sounding Instagramish – better than life – it was magical in every way. Doug’s caregiver came, and Doug did well. The weather was perfect, the sunsets glowed, and we all marinated in each other’s company. Driving home, I spoke my momentary feelings out loud, “If Doug stays just like this forever,” I said, “I could handle it.” I wanted to push STOP on his dementia progression, accept where he was at that moment, and end my unstable emotions around further advancement. Or, more succinctly, “I want my Doug back; I don’t want to do this anymore.”

Robert Frost said, “The only way out is through,” which is undoubtedly true when delivering a baby, but I don’t think that is what Frost had in mind. The quote reflects a profound truth about facing challenges and emotions head-on. Rather than avoiding or bypassing difficulties, it suggests that the path to resolution or growth lies in confronting and moving through them. I get it. I want resolution and growth as much as the next guy, but the truth is, I prefer to go around. The path through is hard, unpredictable, and often way. Too. Long.

In 2015 I cocked my head like a confused floppy-eared German Shepard puppy at something odd and unusual Doug did. I had no idea it was the beginning of many cocked-head experiences to come. Dementia is stealth-like, especially early on in someone as young as Doug. His brain was masterful at compensating, rerouting, and deflecting. A long four years later, filled with frequent German Shephard head tilts and assorted medical appointments, we received his official dementia diagnosis. The diagnosing physician said Doug was past the mild stage and into the moderate stage of the FTD disease. Today, all these years later, he’s progressing through the late stage, the final stage of the disease. Dementia is no longer stealth-like; it is thoroughly hands-on – obvious, relentless, harsh, and impatient in its proficiency – bluntly embezzling Doug’s life and tossing my paper boat feelings to the wind.

I am the fragile kind of tired.

Sometimes, I imagine how I might feel when I have come out the other side of this dementia experience after going through it. I imagine no longer feeling fragile-tired and experiencing resolution and growth. Then I hesitate because the only way out is through, and Doug’s through will be separate from mine. He will be complete, and I will be left to traverse unfamiliar Out and Through terrain towards further resolution and uninvited growth, holding my paper boat feelings alone. Still preferring to go around.

Feelings are tricky, and so are imaginations. Acknowledging them and staying in the now simplifies them, and so does rest and God. I know one thing for sure: God is not fragile. Even as I hold my vulnerable, wind-beaten, fragile paper boat feelings that threaten my inner peace, He is the source of peace, and I can trust Him to be everything I need now, today, and every day, one day at a time.

Karen