Worst Day Yet

This morning has been a shocking first, and the worst so far. Bruce had a bad night, waking all hours, worried about everything. Usually I can tell him stories and he calms, but it did not seem to be working. It seemed like any mention of his family made him sad. At about 6:30 am, he saw a picture of his siblings on the photo frame by his bed. It was the one with all the siblings together while on a family outing to a small airport.

He flew into a howling rage. Bruce has only barely raised his voice in the years I've known him. I tried talking softly and telling him I love him, but he looked at me with an expression I’ve never seen before other than on a snarling guard dog as it leapt at the fence. He clenched his hands into fists and shook them, gritting his teeth, saying something about family.

He walked around our room, searching for something. He mumbled that he didn’t know where I put it, but couldn’t tell me what it was. He kept saying the F word and walking around, waving his arms at all the things in our room. He asked about the photos on our bedroom walls. He didn’t know where he was, and just kept telling me to get away from him.

More than once during this episode, fear flickered through my mind. I have never before considered that he would harm me. I took several steps back when he turned those hard eyes on me. I could totally imagine him now, sweeping everything off a countertop, or backhanding me. But he did not. He held it inside and trembled with rage.

I have no idea how I held it together, but I just kept searching in my mind for advice I’ve read for what to do in this situation.

Meet him where he is.

I gave him space. I tried to interest him in vow renewal videos. Didn't work, tried a couple of other happy memories, gave up. Pictures of his family enraged him anew. He clenched so hard, then looked like he was crying in anguish. I couldn’t reach him, and the look of derision in his eyes nearly broke me.

Bruce has lost his three older brothers in the past couple of years. He never flinched at the news of their deaths. He never really acknowledged it. Maybe his mind has just allowed that realization, and all the anguish that losing his older siblings was supposed to have caused, is now coming crashing down on him.

Trying for a diversion, I opened the shades. He came closer and looked outside. I asked if he wanted to put on pants and go outside. He took the pants, but struggled with them. I offered help and he spat “Don’t touch me!”.

He was blaming me for something, but I could not understand what it was, so I just apologized. I told him that I was so sorry, and that I didn’t mean to do it, and to please tell me how I could make it up to him. He just shook his head and scoffed. Every time I told him I love him, he shook his head like it was BS.

He finally allowed me to help with the pants, and I started walking toward the stairs. He paced the bedroom some more, snarling F*%k! I waited. He shuffled toward the stairs, but would not take my hand for support. About halfway down, he grudgingly accepted my hand. He found his shoes and put them on. I gave him a hat, and took his walker out the back door. He followed.

He stood on the sidewalk looking around at the courtyard as if seeing it for the first time. He accepted the walker handles and I helped guide him along the sidewalk. I could see that his anger was beginning to thaw. We stopped in the clubhouse to look out at the Caribbean, but he wasn’t ready to sit down like we usually do. He was still struggling with something, but his glances at me were now more full of resignation than anger.

I followed his lead as we went back out into the courtyard, this time in the shade, with a slight breeze. It is truly a beautiful day. We approached the path to our condo and he seemed to know where to go. He was ready to go back inside.

Once inside, he was still restless, so I asked him if he wanted to go out the front door, and he agreed, actually showing interest. He stopped right outside the front door and raised his face to look around him, and he said

“I should be happy.”

We walked along on the sidewalk, more quickly than usual, and without the walker. We made it all the way to the gate before I suggested that it was beginning to be hot, so maybe we should walk in the shade. He asked me something, gesturing to the area around us. Having no idea what he was asking, I explained that this was our condo property, and next door there were others. I pointed back toward the beach and told him that way was the Sea, to which he replied “I know”.

He began to walk back along the sidewalk to our door. Once inside, he drifted while I made our breakfast. During that time, his anger seemed to melt away, and while he no longer seemed angry, confused or frightened, he was more mystified. He was once again dependent upon me for his every move.

The stairs confused him, but we made it back up to bed with our breakfast tray. He agreeably crawled into bed and seemed to enjoy the apple oatmeal we shared. He took his pills, and finished his water. I asked him if he needed to go to the toilet, and he agreed. But once there, he didn’t need to go. He was just agreeable to try if I suggested it.

Back in bed, he closed his eyes and dozed for about ten minutes. Now he is awake, and is calm and sweet like nothing ever happened. Today was the first time I have experienced any real doubt that I could handle this. Every moment of every day is an invitation to chaos. I have zero control, or advanced knowledge of what will happen in the next hour, or the the one after that. Nights alternate between sleeping one night, and the next he's awake and despondent while I try to ease his mind. I'm heartbroken. I'm scared. I'm so weary, yet desperately afraid that this signals the beginning of the end stages. Trying to be thankful for the support of some wonderful ladies I have met in a caregiver support group, and keeping my shit together are about all I can do.

Some Permanence In My Life

Our lives have become so small. Sometimes I wake and lay there quietly, because I'm just not ready to get up and go to work. I need just a few more minutes to think my own thoughts before I find out if we are having a good day or a not-so-good day. 

Yesterday at around 5:30 am, Bruce got up to use the bathroom. I noticed that his shuffling steps seemed heavier than usual, and his face wore an expression I have never seen. I asked him how he was feeling. He raised his eyes to me and mumbled “She’s dead”. Who is dead, I asked, and he dropped his eyes again as I heard him whisper... Tammy. 

Everything inside my body seemed to harden into stone in that moment. 

Sufferers of FTD lose their ability to feel empathy, but that does not mean that they can’t be sad. The profound sadness emanating from my sweet husband almost killed me in that moment, which would make him correct, I guess. 

Nothing can prepare a wife for this. 

I took him back to bed, and I held his face in my hands as I snuggled by his side, and I told him "I'm alive!" I am Tammy, and I love him, and will never leave him. I continued to reassure him, telling him about our wedding day, in great detail, until his breathing took on the even rhythm of sleep. 

Still snuggled at his side, I thought about our lives together, and how happy he has made me.  How am I going to make it through this roller coaster of emotion, loneliness and isolation. 

The relentless darkness attempts to overtake me and pull me under, 

threatening my promise to always be here for him. 

Maybe an hour later, he woke up showing no trace of his earlier sadness. Ok, good day it is!! We take a short walk to the Clubhouse and sit in chairs in the breezeway, watching the colors of the Caribbean change and shift. We spot a sailboat on the horizon, either heading for Jamaica, or perhaps coming into our Bay to escape the wind and waves for a night or two. 

I close my eyes and feel the breeze on my face. 

I breathe in the familiar scent of the sea, and my heart seizes up again. 

Memories threaten to break the carefully constructed dam I have built against them. 

Those days are gone, and I can’t contemplate them right now. 

Maybe someday. 

I long for some consistency in my life. Something permanent. Something that will forever be the same that my mind can hold onto when I need grounding. 

I almost got a tattoo once, many years ago. I am glad that I didn’t. I was going to get a hummingbird. I was into hummingbirds back then. I like them still, but not enough to have one on my… er, um… body forever. 

Bruce is my other half. He is my Libra scale-mate. I am one side, and he is the other, and we are balanced. Together, our individual talents combined, making it possible for us to achieve our dream. That’s why we chose the Libra Scales as the graphic for our cruising home. 

Dos Libras.  

We were strong, adventurous and resilient.

Now we drift through the days like ghosts, 

We are trapped between our past life, and what is to come.  

The scales begin to tip as I carry more of the weight of Us. 

I feel helpless, as I experience with him, 

The growing distortion of his wavering mind. 

We shift and slide like a reflection of what we once were, 

As we slowly dissipate into the waters of the Caribbean. 

I know he is still with me. I know that he will always be with me. He’s just different, as am I. We had a good run. We tossed off the dock lines, and lived the dream as so few ever do. We dropped anchor for the last time here in our Bay, and home is where you drop the anchor. But home is also where Bruce is. He is my heart’s anchor. 

He is my strength and my permanence. 

I know that the ripples will eventually  disappear, but 

We will always be Dos Libras. 

And this, I will wear on my skin. 

Forever. 

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???