Coping with loss: A year after my parents died I’m trying to come to grips with their passing. I miss them everyday.

In the end, dementia killed my mom and dad. On a sunny day in December, I told my dad that he would die soon. I told him that Mom was also dying. Time was short.

The next day, at Dad’s request, I had virtually the same conversation with Mom. I told her that she, too, was dying.

Less than six weeks later, they were both gone.

Now it’s one year out from their deaths, and I’m still trying to sort it all out. I feel rudderless, drifting without purpose.

This isn’t our usual travel or truck camper story. I’m Steve, and I’m taking a different path today. It’s been a year since I lost both my parents to dementia, a year of anniversaries marking their passing.

To navigate these complex emotions and the memories of the past six years, I’ve turned to what I know best: writing. What began as personal journaling has evolved into a series of articles exploring our family’s experience with aging parents and the challenges of noticing early signs of dementia.

What I’d like to Tell My Parents

Here’s what I’d like to tell my parents now that I’m coping with loss, but can’t. Even to say that sounds preposterous. I’m not sure that they would be interested in anything that pushed on their version of reality.

I find myself talking to them now, even though they’re gone. It brings me comfort. Sometimes I share a memory, sometimes I just tell them I love them, and sometimes I whisper all the things I wish I’d said when they were here. These conversations, even though one-sided, feel powerful. They help me grieve, yes, but they also help me keep their spirits alive in my heart.

So, here are parts of the conversations.

I’m Dreaming of You-Life After Your Dementia Deaths

You still make surprise guest appearances in my dreams. I try to invite you, whispering my hopes as I drift off to sleep, but it never works. You’re both dream rebels, it seems, showing up only when you choose to.

Dreaming Of Dad

Dad, my dreams of you are filled with anxiety. They revolve around doing something for Mom. Paperwork, a form that I forgot to complete, a facility that we need to move her to, insufficient money, and incomplete tasks that are critical for her well-being.

I’m aware in my dreams that Mom is dead, and there’s nothing else I need to do for her, but the anxiety is still present that I’m missing something vital.

Your appearance is murky in my dreams. You hover near the edges of the dream, sitting in a wheelchair and not speaking. You look like you looked the last few months of your life, not good. I can tell that dementia has you confused.

We haven’t spoken yet. You seem restless and anxious. I’m worried that you’re not at peace, but I don’t know how to help you. It’s not helping me in coping with loss when I still feel worried about you.

Coping with Loss: Dreaming Of Mom 

Mom, I had this amazing dream that you and I are playing kickball. The ball rolled over the edge of a hill, and you said that I needed to go get it. The entire dream was a chill vibe—no anxiety.

We were hanging out somewhere together as friends, not hanging out because we had a familial obligation. We were hanging out because we wanted to be together.

I was aware that you were my mom, and you were aware that I was your son, but somehow, we are beyond that phase of our relationship. We were somewhere completely different than the plane of existence I know today. I don’t know our age, but we seem to be around the same age. Not young or old.

You seem to be at peace. I’m not worried about you. You have no signs of dementia. You’re laughing and relaxed.

I know we’ll meet again. We’ll be the same people, but different. If this is the last dream we share, it’s enough.

It’s Easier Now That You’re Dead

Mom and Dad, this might sound terrible, but in some ways, it’s easier now that you’re both gone. The weight of caring for you, especially with dementia, was immense. Every decision felt heavy, and the second-guessing…it never stopped.

I was incredibly uncomfortable with how much control I had over your lives once you both had full blown dementia. I tried to listen to everyone and make informed decisions. Often, I was presented with differing medical opinions about your needs. The choices rarely had a positive outcome, only a selection between poor options.

The amount of work it took to care for you was staggering. Some weeks, I had fifteen or twenty phone calls about your care. Some weeks, I had no phone calls at all. In my ever present backpack I carried a black notebook with all your information, notes about doctor visits, meeting minutes, a walking and talking encyclopedia of everything about “you.” The ever trusty laptop had stored logins for all banking, credit, VA, Medicaid, Social Security, and doctor websites.

I was so very close to completely losing my shit during the last few months of your life. I know that you didn’t want it to end up like it did, but at the same time, you didn’t do anything to prevent it from playing out just as it did.

Coping with Loss: Conversations with Dad

Dad, convincing you to take the first dose of morphine was more straightforward than convincing Mom. I told you it was OK, and you trusted me. You knew that I wanted the best care for you.

I also just desperately wanted to touch you in those final days and hours. More for my own comfort, I think, than yours. But without the pain medication, you bristled at any touch. So, I partly wanted you to take it for me, so that I could feel some comfort in touching you, knowing you weren’t in pain.

I teased you that I would bring in seating bleachers so that we can all just sit and stare at you. As has become your new normal, you spent a lot of time with a Snoopy blanket pulled over your head. Even after you took the first few doses of morphine, I was still hauling you across town to visit Mom.

Balancing Care Between Parents

One day, near the end, I needed to attend to Mom, but you were past the point of leaving your bed. I honestly didn’t know if you’d be there when I returned. I asked myself what you’d want me to do, and the answer was clear. We left to visit Mom, but leaving you was so very hard.

I spent much of the last week of your life sitting in a chair next to your bed. I didn’t talk too much. For the most part, I just sat and waited. I knew what was coming, but I didn’t understand it as well as I do today.

I wish that I’d thought to ask what kind of music you wanted to listen to at the end. Did you want music at all? It sounds stupid to say, but maybe different music would have eased your transition.

Terminal Agitation

Dad, your final days were rough. You were restless, constantly trying to crawl out of bed, rolling side to side, unable to find comfort. After a lot of angst, the hospice staff identified the condition as terminal agitation. It wasn’t a good situation. It will haunt our memories for a long time to come.

I wish that the memory care staff and the night shift hospice nurse had been better trained to identify terminal agitation quickly. We spent a lot of time trying to comfort you and even restrain you without using restraints. It was awful. It was distressing for all of us. 

I had a straightforward conversation during a meeting with the hospice nursing director. “I want my dad to have a peaceful ending. His agitation is highly upsetting for the family. We will trade consciousness for a lack of agitation.”

And it was so.

The End

The last twenty-four hours of your life were hard. You were gasping. You’d stop breathing, and we’d think you were gone, but you’d give a gigantic gasp after about twenty or twenty-five seconds, and we’d start all over again. In my mind, you died hundreds of times during that last day.

The hospice nurse suggested that we give you space. She said that some patients want to be alone to die. Honestly, this sounded like you. We start rotating shifts in your room, only one person at a time. You died shortly after. (Dad, maybe you would be so kind as to let me know upfront that you want to be alone the next time we do this?)

I was sitting outside your room drinking coffee when you died. Lisa was at home showering.

It was you and Noelle, who was sitting quietly near you. She says it’s one of the greatest honors of her life, giving you space to meet your Maker. She’s thankful for your trust in her, that you let her walk this last step with you.

A few hours after you died, the hospice nurse and I washed and dressed you. You and I never talked about this final act, but it felt right. I will bathe you and dress you in every lifetime we share after this too.

The funeral home rolled you out through the rear doors of the assisted living facility. And your glasses automatically tinted in response to the sun. We all got a chuckle out of that.

Conversation with Dad: Your Funeral

Jessica, Tayler and Danielle fly in for your funeral. I nearly weep at the sight of them. I’m so grateful that they are here. They are literal human blocking between myself and my siblings, servers, everyone. I just need space, and our daughters provide protection that I didn’t know I needed, until I needed it. I am so thankful for their presence. Dad, did you ever need me the way I need my children? I wonder.

I’m staring at your body in the casket and a sibling is trying to talk to me about something banal. It’s all I can do to not lash out. It feels too normal. Instead, I can only focus on my relationship with you, and the realization that it’s gone. I’m terrible at coping with loss.

I think how you used to light up when I walked into the room. I could feel your happiness when you saw me, and now that light is gone.

My Dad in a Casket

Oh Dad, the funeral home didn’t do a great job on your makeup. You look pretty dang rough. I’m not sure what to do, so I do nothing. Noelle gets a Kleenex and cleans you up a bit.

I must admit that seeing you in the casket doesn’t leave me as a fan of viewings. It was you in there, but also not you.

I tuck your wallet in your suit jacket pocket, your favorite family pictures intact. Your body is hard and feels stiff. After a lifetime of hearing dead people referred to as “stiffs” I’m still surprised that you’re actually stiff.

We buried you on a cold January day at a military cemetery. You and Mom will share a plot. You’re down about eight feet, and mom will be buried directly above you. You picked this cemetery because it’s free. The military does a nice job with the honor guard. It’s a pretty cemetery.

Now That’s A Heavy Casket!

I had the bright idea that we’d carry your casket from the hearse to the podium at the cemetery. It was about 25 yards. I don’t know why, but you were dang heavy. As soon as we picked up your casket I was like “whoops!” We didn’t drop you, but I was worried.

We sent you off with your favorite Snoopy blanket, NASA hat, and a Snoopy t-shirt. Gumby is safely tucked into your jacket pocket. I was sorely tempted to stick an Airtag in your pocket to ping you from above ground.

Each and every day I miss you, Dad. I didn’t expect to miss you this much. I’ve reached for countless postcards to mail you. I miss the pre-dementia version of you, but I’d still love a hug from you in any condition.

Coping with Loss: Conversations with Mom

Mom, you’re so fragile and tiny; you weigh only 87 pounds. You have a broken rib, but you don’t understand. Hospice thinks you broke it from laying on your side for too long. 

You’re trying to walk to get away from the pain. So, we walk and walk, but you continue to suffer. You’re angry and lashing out, so I give you space and leave for a spell. Later I find you fully dressed standing in your shower, confused and upset, but angry that I was trying to coax you to come out. Dementia is such a bastard. I hate what it’s done to you.

You tell the nurses to “take a hike,” and we walk again. When it’s too painful to walk, I push you around in a wheelchair. Endless circles around the memory care floor to help ease your mind. You think we’ve gone out for a drive, and you slowly calm down.

Talking About Hospice

On a different day, I join you at the breakfast bar. You don’t know who I am, so my presence has you on high alert. I give you space and watch from a distance.

The hospice nurse is trying to get you to accept pain medication, but you’re wary. I try to convince you, but you tell me to go away.

Ultimately, I sit in a chair and wait for you to walk around the corner to discover me. Hospice gave me the morphine dose to administer. I act indifferent to your presence. We speak of the pictures hanging on the wall.

You approach and sit next to me. We chat for a few minutes until you’re at ease. You accept the morphine after some coaxing. I would do it again, but I wish it was the hospice nurse who could have given this first dose instead of me.

Coping with Loss: A Mom’s Physical Touch

Mom, you and I were physically affectionate with each another for most of my life. We’d sit next to each other, poke at each other, an occasional hip check. You like to hug. I wish I were as relaxed and comfortable with my children as you were with me.

Once you had advanced dementia and didn’t know who I was much of the time, I stopped trying to touch you. Instead, I asked for permission before I hugged you. Sometimes, you said no.

We’d still hold hands while we were walking, or sit next to each other on a bench. But you were in control of the engagement. I don’t want strangers touching me, so I can hardly fault you for the same behavior. 

Touching You in Your Last Days, Mom

In those last few days, when you were dying, I was still hesitant to touch you, but I did. I put lotion on your face and hands and brushed your hair.

We sat together as you lay dying. You couldn’t talk, so you just looked at me. It was comforting, but also unnerving. I shared about dad passing, his funeral, and what I said at his funeral. It seemed like you understood. Did you? I shared my recipe for bacon gravy and you seemed to approve. It seemed like you found great humor in my admitting that I hadn’t able to get Dad’s chocolate habit under control.

I thought our final conversations would be deep and meaningful, but instead, I talked of gravy, biscuits, bacon grease, and gardening. Did you understand what I was saying? I’d like to think you did.

The End

When you stopped breathing, we opened a window to let your soul fly free. I’m glad we did. I wonder if Dad is uneasy now because I didn’t open a window for him.

The hospice nurse came to the facility. Together, we cleaned you and changed your outfit. Having learned from moving Dad around after he died, we selected a simple outfit that was easy to dress you. (You may have resembled a Peep.) You were easier to manage than Dad. Thank you.

The funeral home transfer person wanted to cover your face before we walked outside with you. I declined. It was cold outside, so I put a hat on your head to keep you warm. We walked out with you through the front door. And then we started coping with loss.

It’s Not Just A Casket-It’s Long-Term Storage

Mom, I had unrealistic expectations of how you’d look in your casket. The funeral director told me how cute you looked. I expected you to look like my mom. Instead, you looked like a stranger to me, even when I viewed you from a distance with my eyelids heavily squinting. An adorable older lady, but not so much my mom. I didn’t realize how much you smiled in life until I saw you still and not smiling.

We buried some of your brother’s ashes with you. I offered and your nephews graciously accepted. We took your brother’s ashes on a tour all around town. I caught him up on all the family gossip. As you can imagine, we had much catching up to do. 

We didn’t know what to do with your wedding dress, so we buried it with you. I had your wedding rings cleaned, and you wore them again in your final resting place. We sorted through all your jewelry, and everyone chose a piece to keep.

I so wish we’d done this fifteen years ago, when you could have told us the story behind each item. Everything that wasn’t claimed went with you. I couldn’t bring myself to throw anything away or donate it.

Conversations With Both-One Year Later

I’m working on coping with loss, but there are so many things I still wish I could say. If I could sit down with Mom and Dad right now, a year after they’re gone, here’s what I’d tell them.

Why Wouldn’t You Talk About Dementia?

We didn’t have any meaningful discussions about dementia until it was too late to do anything except react. I tried, over and over, to get you to engage in a reality-based discussion. But you both blew us off, over and over again.

What were you so afraid to talk about? Honest conversation would not have changed the arc of your disease, but knowing your thoughts and feelings would have been incredibly helpful. If we had been able to plan, I believe it’s very possible you could have lived in the same facility. I’m saddened by this, but it’s yours to own, not mine.

Your Lack of Planning Screwed Me Over

Coping with loss has left me a little angry. Who did you think would clean up the pieces of your life when you couldn’t clean them up yourself? You had shit relationships with two of my siblings and borderline shit with a third sibling. I was left holding the bag of your poor relationships.

Much of your “care and feeding” was voluntary on my part. I love you and care about you tremendously. Yet, your “distant” relationships with some of my siblings allowed them to take a hard pass on much of your support.

How did you think this would play out? Did you give it any thought, or did you just assume I’d clean it up for you?

Your Poor Parent/Child Relationships Hurt My Bank Account

Your financial advisor told me approximately a year and a half into our dementia journey that I needed to charge you for the time I was spending. “Do your siblings understand how much time this is taking you?” But I think a better question might be, “Do my siblings give two shits?”

Mom and Dad, how precisely should I have charged you for my time when you were running out of money? If I charge you for my time, I’m accelerating the rate you run out of cash. Running out of money doesn’t mean that Dad will qualify for Medicaid. Lack of funds is not a qualifying life event. So, if you run out of cash, we (Steve and Noelle) will be forced to pay a facility for Dad’s care, or Dad will need to live with us.

When all is said and done, we took a hit to our bank account of over $90,000 in direct cash expenses and $133,000 in indirect costs. If we add the opportunity cost to support you, the total numbers double.

It’s a stiff price we paid to support you. I don’t fault you that your life journey took you into uncharted territory, but I do fault you for having a Pollyannaish approach to how your finances were going to magically work out. Perhaps, more honestly, your Pollyannaish approach worked for you. You didn’t plan or care, and it worked out just fine for you.

I’m trying to let as much of this go as I can, but you might be able to tell I’m a little angry still. Coping with loss is hard. Really hard.

Power of Attorney Is Greek for “Total Bullshit”

The Power of Attorney documentation was generally adequate for the “big stuff” but silent on critical items. The POA stipulated much of your legal “care and feeding” in the ‘worst case scenario,” like artificial tube feeding, but remained silent when conversations shifted into a gray zone.

How many phone conversations did I have with your care providers about the gray zone? Hundreds. Your lives in the last few years were all about the gray zones.

Should we stop giving you vitamins? Ensure? Preventative health care? Essential prescriptions? Non-essential prescriptions? Trips to the dentist? Eye care? How much autonomy should you have with your own health decisions? Do we want you taken to the hospital if you fall and break a limb? Intubated?

How much autonomy should you have with your finances? Dietary restrictions? Non-tube forced feeding? How much chocolate should you eat? Sodas ? Popcorn? How much money should we spend on clothes that you refuse to wear? How long should we wait before we give your brand-new clothes away and buy more clothes you won’t wear? Should we have your food pureed into a smoothie for you to drink through a straw? The questions repeated over and over.

Coping with Loss…And So Many Questions

I thought that a Power of Attorney and advanced health care directives would answer all the questions that would arise. In reality, the legal documentation answered very few questions in the way you might want them answered, but it gave us the legal responsibility to decide for you anyway.

Talking with one sibling about you was very difficult. The conversation generally defaulted to “Mom and Dad made you the POA, so they trusted you to decide for them. My opinions don’t matter.” In the end, I stopped asking for input from this sibling.

Mom and Dad, how exactly did you see Power Of Attorney and Advanced Health Care directives playing out? In our situation, it was a stick of dynamite with a lit fuse.

Coping with Loss: Talking About Your Death

I wish we’d talked more openly about death. You both experienced the loss of your own parents, and even some step-parents, yet we never really discussed it. I had access to experts on grief and end-of-life care, and I regret not taking advantage of your knowledge. What could you have told me about coping with loss? All my careful pre-planning and spreadsheets…they all stopped the moment you were buried.

How Long Will The Grief Last?

The initial goodbye was difficult, but in some ways, coping with loss is more difficult a year later than it was when you died. I find myself momentarily pocketing a juicy family tidbit to share with you. Or thinking I should send you the photo I just took, only to realize that you’re not here. It’s the loss, over and over, that’s been surprising to me. Will it go away?

I Left It All On The Field

I tried so hard to change the final course of your journey during the last few years of your life, believing that through sheer determination I would force a different outcome. Yet, it was too late. Why wouldn’t you engage in the conversation earlier? We tried to talk with you so many times.

Noelle and I completely engaged at the bottom of the 9th. You both had played out most of the game decades ago. We couldn’t change the ship’s direction, but I tried so fucking hard. I put more time, effort and energy into you in these final few years than I have put into anything in my life. But it simply wasn’t enough.

I wish you’d trusted me enough to talk about your dementia before it became a crisis. The anger, the sadness, the loss, the regret… they still swirl around in my head sometimes.

But there’s also love, and gratitude, for the life you gave me. I wish those last few years had been different. I wish we’d had those hard conversations sooner. But even in your deaths, you’re still teaching me.

We’ve promised each other to be more open with our own kids. And I hope we can show them the same grace you showed us in finally letting us care for you, when our time comes. I hope we can model coping with loss for them, as we grieve for you.

I miss you, Mom and Dad. And I love you.

Coping with Loss: Now What?

These past five years have completely reshaped my view of life, and death. Caring for Mom and Dad… it changed me. It made me a better human, I think. Caring for both of them was the most meaningful work I’ve ever done, and I’ll never regret a single moment. It was special. I’m honored I could be there with them, every step of their final journey.

Noelle and I originally planned to take maybe two years off work. Six years later, we’re still not back to our “serious” careers. We’ve picked up freelance writing here and there, but honestly, we’re spending way more than we’re earning. And 2024? The absolute worst year I’ve ever had for finding freelance work.

Before all this, I was a semiconductor process engineer, an application engineer, and even a long-distance hiker. Then, quite unexpectedly, I became a caregiver.

Now, I’m facing a new challenge: how do I possibly find a paying job that’s as fulfilling and rewarding as caring for my parents was?

This Grief Journey

Grief has been such a personal journey for me, unlike anything I’ve ever experienced. I’ve learned there’s no right or wrong way to feel, and healing isn’t a straight line. Instead, grief comes in waves, slapping me when I least expect it.

In coping with loss, I’ve had to permit myself to grieve, to remember, and to slowly adjust to life without my parents.

Being kind to myself has been crucial, and leaning on others for support has helped immensely. I also realized it’s okay to ask for professional help when the sadness feels overwhelming. Hospice offers grief counseling, which I’ve taken advantage of.

I’ve come to understand that grief isn’t something you just “get over”—it’s something you learn to live with, integrating it into your life. The love and memories of Mom and Dad continue to shape who I am.

Even though the sharpest pain of loss has softened a bit, the love and connection I shared with them remain. I hold onto the cherished memories, the lessons they taught me, and the love that still binds us, even though they’re gone.

I try to let their legacy live on through me – in how I live my life, the kindness I try to show others, and the love I continue to share. In that way, they’re always a part of me.