Take care of yourself they say…

This is what it looks like in my brain

I’ve been fighting with the neighbors.

No, really. I’m fed up. I have no filter left. I spend so much energy making sure that we are self sufficient, and by that I mean ME-sufficient. I would rather give than receive, and I would rather poke a fork in my eye than to ever ASK for help. 

Decades of having high expectations, both put upon me, and self imposed, has left me with a strong aversion to neediness, and it has served me well.

The past year has been like the stock market on a downward trend. Bruce passed out and had a little seizure just over a year ago. I think he might have had another, or maybe a small stroke about 2 weeks later, and he was stripped of most of his abilities to do things for himself. 

Now, one year later, he as regained some of the abilities he lost, but not all, and he is mostly unable to speak. He has also begun to get overwhelmed or overstimulated if we leave our house. 

It began in small, random events that caused me to stop leaving him alone, even for a short time. Then he began to get confused, like he would look around and begin to panic because he could recognize nothing. It’s like everything is just sometimes gone. It’s terrifying for him and for me, and the only help for it is to get him back home and let him sleep. 

I have to hold him and soothe him and tell him that he is safe and that we are home and have everything we need, and that I will never, EVER leave him alone. Only reassurance overload will bring him back, and then we have two or three days of exhaustion. He hardly gets out of bed. He doesn’t want to get out of bed, and he wants me to be there with him. 

I have learned that it is OK to check no boxes. No progress is made. No productivity happens. And the world didn’t end. My one job is to keep that look off of My Love’s face. I

t’s difficult to describe, that look. It’s something like how your face would look if you woke up suddenly and your bedroomroom was a blazing inferno. And when I see it, all I can do is ride the snaps and crackles in my brain until I figure out how to put out the flames for us both. 

It began to force a change when he could no longer wait in the waiting room while I visit my doctor. Twice now, he has been calm and totally cool when asked if he was OK to sit and wait for me. Then I come out of the office to find him shivering and trying to get outside. Won’t be doing that again. 

It really got my attention when we went to the local hospital to try to find the office of a neurologist, because his doctor no longer comes to our town, and it is just not possible to take Bruce to a town that’s an hour and a half away. 

So we get directed here and there in the small hospital, until Bruce begins to spiral. He’s short of breath, and dizzy and feels weak. I brought him to MY doctor’s office and we sat there as I tried to soothe him. My doctor finished with a patient and came out to check on us. He took Bruce’s vitals and found the low blood pressure as usual, and decent blood oxygen, but he still said he thought I should take him to the ER. 

I assured him that this was normal and the ER would not help. I just need to get him home, and I can’t walk him to the car because it is too far, even in the handicap parking. I can’t leave him to go get the car, so I asked if they had a wheelchair. Yes!

My doctor’s wife wheeled him to the curb and waited with him until I brought the car around. We got him into the car and he was feeling a little better by the time we got home. 

The next time was at the grocery store. I have been ordering meals from a lovely woman in the next town over. She brings the order ever Sunday. We get most of our groceries via Walmart pickup. I order online and we pop over and back. Easy peasy. But with Bruce’s appetite and inability to eat certain things, I’ve had to try to find things he likes, and some of them can’t be ordered from Walmart. 

So we went into the neighborhood grocery store and I was just getting started when he got that look. Normally he’s happy to push the basket. It helps him if he can lean on the cart. Not today. I ran to get the motorized basket and sat him down. I worked the controls standing next to the cart, but he continued to deteriorate. The panting, the wild eyes, and even a full sentence burst from his lips! “I want to go home NOW!”. He hasn’t produced a complete sentence in months. We’re going home now. 

The most recent event was a trip to Walgreens for vaccines. There were five people in front of us and I could tell Bruce was beginning to worry. I asked how long it would be and told them we weren’t going to be able to wait. 

That was a couple of weeks ago. Since then, we have only had one Walmart pickup, and now, I’m even ordering delivery for our prescriptions. We have been outside in our back yard with a short walk to the clubhouse twice, one of which caused a panic. We have walked to the mailbox twice, both times with his walker. He pushes it to the mailbox, then we convert it to a seat and I roll him back. 

Then he goes to bed for the rest of the day. I bring his dinner to him in bed, and we have breakfast in bed most days. 

We don’t see anyone. We don’t talk to anyone. Our lives are small. As long as we don’t leave the house, we have some pretty good days. But I’ve learned my lesson. I don’t know how many more disruptions he can take. I’m not sure what we’ll do next time we need an oil change…

So what has all of this to do with fighting with the neighbors. You’ve stuck with me this far, let’s get back to the reason for this personal headspace dump that my blog has become. 

Our building has six units. We are on the end. In the past six months, there have been three sold and all of them are doing MAJOR renovations. Tiles removed from floors and walls. Central AC installed which requires trenching concrete walls. Complete removal of kitchen and bath fixtures, and installation of new everything. 

Our buildings are made of concrete. I can hear it if the person 5 condos down is hanging a picture on their wall. We can’t hear an argument going on right next door unless the windows are open, but tap that concrete and we all hear it. Just imagine how demolition sounds. 

The imagine how it sounds when three new owners are playing row-row-row your boat demolition in a rousing and continuous round. For months. Then imagine how your husband with dementia is disrupted and frightened every time a new sound travels through the walls and into our safe space. 

And then imagine that you can do nothing about it but just deal… except for Sundays. No demolition allowed on Sundays. Most of the time we don’t even know what day of the week we’re on, but when that noise begins at 8:35am, I’m looking at the calendar. 

So this past Sunday, they were at it again. I send a message to the administrator asking him to please get them to stop. He ignores me. I ramp up. Remember, I have no filter and am taking zero BS because I’m living five minutes from panic on the daily. 

Let’s just say that my tone may have been offputting. And when I got nowhere after 3 hours and they were still rattling the foundation, I went down there with my video rolling. A woman was coming out of the apartment and I asked her (In mad Spanish) if she was the owner. No, she was a friend. She asked if I was taking video, I said yes and she clamped her mouth shut and disappeared into the apartment next door. 

 

I called through the open windows for the workmen, but they did not come out. I went back into my apartment, now becoming that crazy Karen, out of control and just wanting it to stop. I posted on the community chat that the board and administration were doing nothing, and that they told me to call the police. 

I called the police!!  They came right over. We had a very nice chat outside of the offending apartment. The police knocked on the door. Silence. The police said there was nobody there. I assured them that while I was letting them into the gate, the walls were shaking. They’re in there. But they aren’t coming out. 

Another kind neighbor came down and we chatted a bit more, but basically, the police can not enforce the Bylaws of our condo, and really can do nothing on private property unless someone breaks the law. 

So our administrator was just kicking my can down the line so that he could enjoy HIS Sunday. Well not unless he put his phone on silent, because I texted him every time I heard a noise, and even sent video. 

At this point, I had lost my mind. My face was wet with tears of rage, and my eyes were practically swollen shut. Poor Bruce was just trying to understand, and kept rubbing my arms and wanting hugs. It was a complete shit-show. 

Eventually the sound stopped, and did not start up again. But our day was pretty much ruined, and I was exhausted. We went back to bed, and when I finally came to my senses, I was somewhat embarassed at my behaviour, but not entirely. 

Rules are rules damnit! 

So, Monday, I was still feeling like I had been run over by a truck. This is when I found out I could order my prescriptions to be delivered. Hallelujah! I can stay in this nightdress for another day! I think this is my third, and yes, that means I haven’t had a shower in three days. Don’t judge. 

There was no construction noise, but today, Monday, the maintenance guy is out there with the weed whacker and the blower. I can’t even go into that. I just can’t. But later in the evening, I go out to meet the UPS man, and I notice that my driver’s side car window is shattered. 

Something happened in my mind. The UPS guy asked me how I was doing and I quietly told him that I just saw that cracked window on my car. He was appropriately supportive and I took my package back inside with a strange quiet in my head. Like zombies were crawling out of the dirt that is my brain kind of quiet. 

I didn’t even tell Bruce. I just quietly sent an email to the administrator that this is the second time I have had that window broken by the weed eater, and I have asked that the man NOT break my windows. I have fake grass that needs no whacking, but the guy does it anyway, and the edges are now threadbare and in need of replacing the whole grass, yes that is on my to-do list!!!

My yard lights are knocked off their sticks and are laying on their side on my threadbare fake grass. There are rocks and sand deeper than the grass where the yard man has blown shit onto my “lawn”. It has been an ongoing battle. If he could just keep the F#&k away from my fake grass… he would not need to blow shit at my car and break my window. AGAIN!!

I told the administrator nicely, none of the above got out. I told him nicely that I would like for someone other than me to pay for the $300 window replacement THIS TIME. And I went to bed. 

Late on Tuesday I get an email asking simply. “Did you call the police to get a report?”.  Oh, and it had to be done on the day of the accident. 

I wanted to vomitt. Nobody mentioned a police report the last time the guy broke my window. There is no crime. There will be no charges filed. There is no mystery, it’s on my security camera. So I sent a short and scathing reply, and turned once again to the Community Chat. 

Long story short, the neighbors were not helpful or supportive. I’ll leave it there for fear of stroking out.

The neighbor who was talking to the police with me was very kind. He buoyed my spirits and talked me off the roof. We had some laughs and talked shit about the little clique and how we were going to take back our community… Nothing to make one feel better than a little plotting. 

Then later in the evening, I get a message from a neighbor woman whom I wasn’t even sure still lived here. It’s been so long since I’ve seen her. Granted, we never leave our house and she’s on the other side of the courtyard, but I digress…

She asked me if I needed anything at the grocery store, and offered to pick up anything we need. 

First I cried. Then I decided that I could not accept the help. 

Then I thought about those Jimmy Dean breakfast biscuits that are so easy to fix and how much Bruce likes them and how they never have them in stock at Walmart for pickup, and how I hadn’t been able to get them the last time we went to the grocery store because Bruce had a meltdown…. and how we had eaten our last two that very morning. 

And then… I thought about the THOUSAND times people had wisely advised that I need to be taking care of myself and ask for help if I needed it. 

And I decided that it was time. I need help. And my reluctance to accept help is not worth taking another trip to the grocery store with Bruce, just to see if he whigs out again. 

Maybe she was surprised that I said yes. Maybe she was sorry she had asked. But maybe it makes other people feel good when they can help someone, just like it does for me. 

I told her what I needed, and that there was no hurry, just whenever she was at the store, grab the sandwiches. And tonight, just as we were shutting things down to go upstairs for that overdue shower, she texted me that she was at the grocery store. She found the sandwiches I had asked for, and she brought them to our front door at 9:30 pm. (long after we’re normally in bed, but I had taken Bruce up to bed already).

I went outside and took the bag while handing her a little gift. I cold not go without giving her a little something in return. She hugged me, and we had a conversation, mostly in Spanish until I told her how much I appreciated the help, and how hard it is for me to accept help, then the my throat closed up and the tears came. 

She hugged me again. A real hug. Not an air kiss kind of hug. It was a hug that surely had her smelling my 3 days since last shower BO, but I didn’t know how to sty that in Spanish. I just have no words, in any language, to express how grateful I am t have such kind people as neighbors. 

She told me some other nice things and seems genuine in her offer of help. I won’t abuse the priviledge but I will keep it like a warm ball of happiness in my heart that I can take out and marvel at when I’m feeling overwhelmed. 

We said our goonights and I brought my precious breakfast sandwiches in and filled my freezer with them. Now happy to have a hoard of emergency food. And happy to have renewed faith in the goodness of people, I celebrated with a long warm shower. 

I’m feeling pretty good as I spill this all out before I sleep. But I’m still pissed off at those other people. Sadly, you can push me around all you want, but when it threatens the wellbeing of my beloved, I come out fighting like a tiger, and that’s not going to change. 

I’m not sure how I’m going to get that window replaced. Probably have to call in another favor. Oh Kim, are you busy???

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…