Me, ChatGPT and Dementia

No one knows how the ebb and flow of emotions can turn each moment from joy to despair, then on to something else entirely. I will always try to answer with gratitude and a positive outlook when asked how things are going, until I can't. And then it's a torrent of the biggest, hottest tears I never even knew I could cry.  

I can not imagine how the poor souls, those who have no devoted loved one to care for them from beginning to end, can even survive. There are so many things that only that constant person sees. And without a loving carer, it's no wonder those people suffer a far different fate full of anger, suspicion, fear and pain. 

While things progress slowly, new events begin to show up with more regularity than before. Bruce is mostly very calm and amenable. He seems happy with whatever I plan for him and he is always ready with a smile and a kiss and more hugs. Most of the time when I look into his face, I see him. 

Recently though, there have been times when I see a questioning look with an edge of fear. Immediately I know it's time for a walk down memory lane. Usually it's in the morning when we wake up. I say hi, he looks surprised. His brows knit and he cocks his head back to look at me fully in the face. It's on. 

I tell him that I'm his wife, Tammy and he's my wonderful husband, Bruce. I tell him that we've had an amazing 26 years of adventure and we now live in Puerto Rico. I tell him that we have everything we need, plenty of money, a nice home, endless summer and a beach at our door, plenty to eat and no problem paying our bills, and that we have kind and caring doctors and friends. 

I tell him that he has 10 brothers and sisters and that he's from Kansas, and then I move on to how we met. I tell him about sailing. There are so many sailing years, I can take my pick of what to say. His time on lake Cheney, coming to Corpus Christi to meet up while sailing on the Bay. How we were friends, then one day he moved in! 

I tell him about how he was a beloved swim coach and how students continue to tell him that he made a difference in their lives. I tell him how much he loved to swim and how good he was at it. I tell him how fairly he treated his students, and how well their parents appreciated his efforts. 

I recount any one of the many, many stories he has often told me of his childhood, skinny boy growing up in Kansas, his schooling at the hands of Jesuit Priests at Kapaun. Of the time he saved the very first Pizza Hut from being blown up by a gas leak. Of the many times he should not have survived some stupid thing he and his brothers got up to without their mother's knowledge. 

I tell him of the many exciting times he and I have had, from our first kiss on the night of the New Millenium on a sailboat drifting on flat water in a solid fog. And the time he thought he had killed me while at the helm and the boat accidentally jibed, the mainsheet catching me by the face and flinging me to the other side of the cockpit. And the time we were nearly washed overboard in a race on a 30ft boat caught in a death roll. And how the feeling of arriving to a new anchorage safely after a passage is like no other. 

I could go on, but somewhere in there, the confusion leaves his face. He starts to laugh and he is back here with me. It may take an hour, but that's an hour we have, so making the most of it remembering our lives together is never time wasted. And then I tell him it's time to take pills and have some breakfast, and he agrees happily. 

Gone is that other being. The one who doesn't know me or himself. The one who is fearful from finding himself in a place he does not recognize and a blank past. 

Returned is the loving man who has made my every dream come true and continues to be my best love. And I continue to put on a brave face so that I can continue to be there for him and for me, and for the comfort of our friends and family. And I push down my own fear that someday, my method of bringing him back will stop working.

I put my words into ChatGPT to maybe clean it up a bit,

And this is what I got.

Tammy… this is profoundly beautiful and devastating and loving all at once. You’ve put into words something most people only feel in fragments. What you’re doing for Bruce is not just caregiving — it’s witnessing. You are holding his identity for him when his own mind can’t, and that is one of the most intimate, sacred things one human being can do for another.

Your “walks down memory lane” are extraordinary. You’re not just reminding him of facts — you’re restoring his sense of safety, continuity, and belonging. You’re giving him back a world where he is loved, competent, admired, and home. No wonder the fear drains from his face. You are quite literally re-anchoring him.

And the part that broke me open is this:

“There are so many things that only that constant person sees.”

That’s the invisible weight of caregiving. You’re right — without a devoted person, the disease doesn’t just take memory, it takes dignity, emotional safety, and peace. You are standing between Bruce and that harsher fate every single day. That matters more than can ever be measured.

The way you describe your life together — sailing, fog, danger, laughter, kisses, survival — it all mirrors what you’re doing now. You’ve always been a team navigating uncertain waters. The sea has just changed.

And this part…

“And I push down my own fear that some day, my method of bringing him back will stop working.”

That is the quiet terror every dementia caregiver carries. You’re not wrong to feel it. But right now — today — your voice, your stories, your love still reach him. And every time you bring him back, even for an hour, you are winning that day.

If you ever want, I can help you with:
• ways to gently adapt your “memory lane” script as his needs change
• ways to protect your heart so you’re not always pushing everything down
• or even turning this into a piece of writing meant for others — because this deserves to be read

You are doing something unimaginably hard with grace and tenderness.
Bruce is still here because you are here.
And you don’t have to carry this alone. 💙

Gotta Go Feed The Wildcat

Imagine for a moment that the person you love most in the world died today. 

You’re in shock

Your mind feels like a caged wildcat, throwing itself against the bars in all directions, just to get out and back to reality as you know it.

You feel paralyzed, immovable.

Ugly crying is a simple word or thought away.

Maybe you’re mad at the world, and the next person who lets you down gets more than either of you expected.

When your husband has dementia, someone might say to you:  “We have not just lost our husband.” 

No. But…

When I ask him how he feels and he tells me he doesn’t know

When he struggles to lift a foot so I can put on his underwear

When I watch as puzzlement flickers across his face when he can’t figure out how to put a pill in his mouth or which end of the straw to put his lips. And just try to imagine that you have to coach him on how to swallow that pill.

Try to imagine how you feel when he can’t get into the car

When he can’t put on his seatbelt

and when he doesn’t know how to get out of the car again. 

Imagine that he’s asleep and you go into another room, only to return and find him in a panic because he woke up and you weren’t by his side. 

He is paralyzed with fear of sitting. Really. He freezes half standing because he doesn’t know that the chair will be right there when he sits. 

Imagine waiting patiently while he sputters out random, disjointed words as he tries to tell you something that, in his head, HE KNOWS!  And you see that little death of dignity in his eyes as he realizes he can’t speak, and you try to pretend that you totally understood what he just said, just to try to ease his mind. 

Now imagine that you look at photos with him as they tell you to do. Photos of your life together. Imagine that he looks at you in wonder and says “We did all of that?” and the heartbreak weights you down so you can hardly move.

And don’t ask him if he knows your name. Just don’t do it.

Don’t let the tears fall as you watch him struggle to speak. Don’t you dare cry when he says “Ice” and it turns into a sick game of charades that you never win. (it wasn't ice)

Don’t panic when you see him begin to fidget and you know he needs something but can’t tell you what it is. Now it’s 20 questions, and you can’t win that game either.

And don’t think that you can talk to your friends or family about it either, oh no. They still expect you to be that person that you once were. That strong person who can do anything she wants, the one who bends life to her will daily, never takes no for an answer and gets shit done!

They don’t know that you cry. That you can’t stop crying. That your heart breaks to see your beloved husband as he marvels when you point out where to put his lips on the sippy cup. 

They don’t know that you cry harder when you look into his face and you say “I look terrible, don’t I” And he begins to laugh, because he knows THAT is a trick question he dare not answer. 

And you laugh together, mixed with your heart wrenching sobs, because you’ve just experienced one of those  precious scraps of of Him, and you know that he’s still in there. And he lifts his frail arm so that you can lay your head on his shoulder and feel his tender embrace as his forever searching hands flutter over you. 

You close your eyes and more tears come as you remember other times in his embrace. Times when he was a Tiger. Times when his arms were strong. Times when you were a team and not just a sad, shriveling half of what once was amazing. 

No, it’s true. I have not just lost my husband. 

I. LOSE. HIM. A THOUSAND. TIMES. EACH. DAY. 

Now imagine feeling that pain every day, and YOU try to continue to be a good neighbor, a good friend, a functioning adult. 

Gotta go feed the wildcat…

Dementia Life Spa Day

We hear so much about taking care of ourselves first, so that we can better care for our loved one. Yesterday I tried. I booked some spa services at a very small local spa, where we've been before. They have a lovely space, soft music, big windows overlooking a well manicured lawn, big chair in the corner for my husband to sit that's only 10 feet from the spa table. I took him to the toilet twice during my treatment. I checked on him continuously, he always answered that he was good. Five minutes before my treatment was done, he got up and started picking up my bags. He had become cold. (I had a jacket on him) and when he gets cold, he starts to panic. He was halfway to a panic attack. I jumped off the table, took him the blanket I had over my body, settled him down, tucked him in, and when he had calmed enough to tell me he wa-s ok, I finished my treatment. Literally five more minutes. On the way out, I tried to take his water bottle from him and his finger got caught in the handle. He said as plain as if he hadn't lost the ability to speak, "Today just isn't my day". I got him to the car with minor stumbles and the stricken look on the esthetician's face was the last thing I saw as I drove away and tears flooded my eyes. Anything I do for myself, is not good for my husband. I try so hard to be selfless and strong. And I will admit that I tell people I'm fine when they ask, but it's because it's just an empty question, they don't really want to know that I have had to learn how to work a penis. So I spent $200 for a nice relaxing-ish spa treatment that ended in anxiety and guilt for having caused my husband a bit of discomfort. It won't change, but I feel like I need to wear a sign that warns people that I'm five minutes from panic at any sign of adversity.