clickmom

Anger

I’m a couple of weeks away from being 58 and today I felt pure anger for the second time in my life.

At first I thought it was bizarre that the hospital was sending me mail that I had to sign for at the post office but I didn’t think much of it. Today I picked up some bullshit 3rd rate lawyer registered letter that was pretty much gas lighting for dummies chapter one: how to do it like a beginner.

Game on mother fuckers. They’re so stupid that they didn’t know that if they sent me an apology letter ensuring me that this would never happen again that I’d be sleeping soundly and not trying to control my rage.

At minimum I am going to report this to every place that it is reportable. Both doctor and hospital.

At maximum this is definitely a case of neglect and I don’t know if there is pain and suffering involved in neglect but if there is now I’m calling the lawyers and letting them loose. Fuck. I will sue for my own pain and suffering.

Anyways, I became so enraged after reading this letter that I felt strange and then my whole body heated up and then I broke out on a full body sweat, like I had just stepped out of a sauna. I thought this is either a heart attack or the angriest I’ve ever been. So I did a search for “physical manifestations of extreme anger” and it described me to a tee.

GREAT

Yesterday the wind here was crazy and I knew I wouldn't be heading to the woods. It was also super cold. When I came downstairs at 8 in the morning the husband was sitting in the family room. He had gotten himself up and pulled on some pants, and made his way to the family room without his walker. Way to give me a heart attack. Anyways, I knew he would be in a bad way come afternoon because he never gets up so "early" but there is no sense in trying to logic with someone who is no longer logical. Also he doesn't even  know if it's day or night- like he forgot how to look out the window or something. In the afternoon I brought the husband to the wound care center for  his scheduled visit with the new excellent doctor. Everything is coming along just fine in the wound department. However, in the car I could see him fighting to stay awake, just like a tired kid. When we got back to the house I could tell that he was so tired that he was starting to glitch. These days when he gets too tired it's as if his head can no longer send signals to his feet and walking doesn't come naturally anymore. I told him he was in need of a nap, and directed him towards his room. He happily got into bed and I tucked him in and wondered if I would see him again that evening. 

Two hours later he emerges in the family room and sits down. That short nap was totally unexpected, but he seemed to have rallied and when he sat down he looked at me solemnly and told me that in the car ride home he wasn't sure who I was and he was trying to figure out if I was Marion or Evan. 

I'm taking a break to have a little cry now.

For the past couple of weeks he has been more vocal about not recognizing any of his surroundings and never knowing quite where he is and I kept telling him that the only he needed to know is that I was there and I was going to take care of him.

When he fell 2 years ago and got carted off in an ambulance to the hospital all by himself (because no family members were allowed in the ER due to covid) with a concussion and didn't know anything and couldn't answer any questions but smiled when the nurse told him I AM ON THE PHONE WITH YOUR WIFE ... I really thought GREAT as long as he knows who I am I can handle this situation. He doesn't know anything except me, I can still take care of him.

FUUUUUUUUUUUUUUUCK!!

I am trying to keep this dude at home and not have to put him in a memory unit somewhere and this is not a good development. I want to start doing alternative things, like give him some MTC oil, and see if it helps. I really need his brain to outlast his heart.

goodnight mom

Because the only things that actually happen to the husband around here are positively not among the thousands of things that I manage to worry about on a day to day basis, last night, after I made sure the husband got safely to bed and "tucked him in" for the night, I said "Goodnight childhood nickname" (I learned it from his 90+ year old grandma back when I only knew him for less than 6 months and he brought me to visit her because he didn't have a mom to introduce me to) and he replied GOODNIGHT MOM.

Whoa. We are not the kind of old married people who call each other Mom (or Dad or "Mother" or "Father" Gross) 

If this was a scene in a movie we would have also heard the needle being pulled across the vinyl record. I froze mid step and I asked "Did you just call me MOM?" He said "I think I did." I left it at that. 

Ask me what I did last week... I knew you wanted to know! Last week I was searching how to tell if someone is getting close to death and seeing your dead relatives coming to assist you across to the other side is a big one. A big one. All of the hospice nurses say that one happens a lot. Was he confused or was he getting a Mom vibe because his Mom came to help him cross over? Both options are loaded with dread. 

On the one hand I AM NOT READY FOR THIS and on the other hand WHEN WILL THIS BE OVER? 

When your loved one gets confused it is so hard not to pressure them into declaring that they aren't actually confused. It's a terror through the heart. Instinctual response? DENIAL. You want to go over what they should be remembering, like its gonna stick if you just spell it out for them. Except it isn't and that just turns your world upside down. FEAR. Are we still ourselves when we have lost our accumulated life time worth of memories? AND THEN THERE IS THE OTHER OPTION:  When your loved one starts to sense their dead mother's presence. I am not going to think about that. However, if my mother in law, who died long before I knew her son, so I've never met her, is here, can we discuss my lottery numbers? The husband used to be the kind of driver who doesn't use turn signals or stay in the lane when local roads have those s shaped curves and he never caused an accident. I know he has guardian angels keeping him safe. I'd like to ask a single favor of his extraordinary driving guardian angels... I will say those numbers out loud once I hit publish here. They know what to do! 

 

TISMF wound care edition

On Friday after I took the husband to the new wound care doctor and we had our little hug fest because I was crying because she fucking listened to me and he was finally healing after four months I came home and I called the patient representative for the hospital where the old wound care doctor works. I got an answering machine but it was late in the day so I just left a message and they called me back just now and I told the guy exactly what I wanted him to know about their doctor and I felt like this guy actually heard me also. I think it was very helpful that part of my complaint included her threatening to amputate the leg below the knee and then me taking him to a different doctor and immediately getting better healing results but…. Here I am …. I am not used to standing up for myself (and him, but as his caretaker this was my battle to fight) and this feels fantastic!! They’re starting an investigation.

At the end of the conversation I said the dude, “Look I’m not hysterical or going to sue you or anything like that I’m calling you because not everyone has the ability and option of going somewhere else when they don’t get proper care and I want to make sure that no one else is treated the way WE were treated and that every patient gets the care they deserve.”

I felt like an advocate to the world.

Also I’m secretly hoping that somebody says to the doctor “Do you know how lucky you are that this woman is not hiring a lawyer and pitching a hysterical fit?” The fact that she was telling me that they would have to amputate his leg below the knee from an infection that she had never cultured/tested for in four months of treatment is telling.

Also, the staff excuses her callousness by exclaiming “That’s the Eastern European in her!” Is fucking lame. Go be a shitty doctor in Romania then.

The real house

The husband is convinced that we are not living in our real house. It breaks my heart. He asks me “Why are we staying here instead of our real house?” And I don’t know how to answer him. When Josh was here on break he did feel him out and asked him too. But the husband hasn’t mentioned anything lately, and I was hoping he had accepted this as our house, until today. Driving back from the wound care doctor he asked me if we were going to take the same exit as our …… and then he trailed off. I knew what he was getting at.

He couldn’t recognize the area and thought maybe I had driven past where we live to this place we are staying in that isn’t our real house. I want to puke thinking about this. I ask all of our guardian angels to not let him get scared and suffer before he goes. As the person who takes care of other people this is way out of my wheel house.

I choked back the tears and told him the only thing he had to remember, the only thing he could never forget is that he is safe with me and I’m going to take care of him. The poor guy is trying to appear like he is holding it all together. My heart is just crumbling watching him struggle to stay on top of things

Yesterday when I brought him to the eye doctor we got back to the car after his appointment and he looked out at the parking lot and said he did not recognize this place and he knew he had been coming to see this doctor for years. Then later, when I brought him to physical therapy I pulled into a spot, facing the building, there was a sidewalk and some bushes between my car and the building and the husband, looking straight ahead, said something about all the cars pulling out of the parking lot because it was so late in the day. Except we were facing the building and not the parking lot and I don’t know what he was seeing. It was just us.

I’m really scared about all of this.

TISMF and more blend

I just want to get this down because this is the kind of thing I want the kids to remember. The husband wouldn’t get out of bed when I was leaving to drive Josh back to his off campus apartment so we went into the room where he was sleeping to say goodbye. Josh put his hand on the husband’s shoulder and said “Dad…Dad” and the husband, realizing it was Josh rolled over with the biggest smile on his face and said JOSH?? with this crazy child like happiness.

Good news!! Just got back from the new wound care doctor. The wound is measuring smaller!! And the doctor is happy with the progress and if it continues like this then it won’t be necessary to redo the angioplasty procedure- which we really want to avoid because if they do it again they’ll need to use general anesthesia . I was so relieved I got teary in the doctor’s office. She hugged me.

Now I am going to call the hospital of the old wound care doctor and have a chat with someone. They need to know their doctor isn’t listening to the patients. (Or the patient’s wife…)

I’m so happy about this.

Okay. Wanted to tell you that last weekend I was walking with sweet pea in the woods with a grad school friend and her freaking adorable dog (she stopped while driving from Boston to NY) and we bumped into that arrogant ex friend who told me I was a BULLY! (HAHAHA) . She joined us and we all walked together. Like we are besties or something.

There’s a Yiddish word for that. It’s CHUTZPAH. It means arrogant chick has a lot of Fucking nerve walking with me.

Then she has the audacity to ask me “Where did you grow up? Long Island?” She knows where I grew up because she also grew up in the city and we have had many conversations about our similar history. If I hadn’t already completely written her off already that would have sealed the deal. She is so …...

I wrote this in an exchange about the potential in the sky for a colorful sunset and I thought that something about it sounded poetic and it might make a good chapter title somewhere in the story of my life: I suspect it’s going to be one of those days that just kind of fades away.

Our grandma’s pillows

Out of the corner of my eye I spotted (among the chias of my bedroom) one of my grandma’s needlepoint pillows. I had had it up in utopia and accidentally toppled the bag that held it. So, probably for the first time I really truly looked at the pillow, with real intent and studied it. I was overwhelmed thinking about all of the love my grandma might have put into this pillow. Who did she make it for? Or did she make it out of some sense of duty as a 60’s housewife? The pillow has purple flowers and a green background. Those are the colors of my teenage bedroom. Was this pillow made for me? Can I redo my bedroom in purple and green and design the entire room around this pillow? (Yes I can! I’m a grownup and I make the rules.)

And then I thought about all of the leagues of grandmas out there doing crafts and making stuff. Maybe this will be my next subject. Our grandma’s pillows.

TIS the editor

Before I paste the text in here, I just want to say that I could not tell this story to the husband without sobbing. Part of it is because the editor has also become the caretaker to her husband with one big difference to my situation: her husband has periods of anger and paranoia and she has been on the receiving end of some serious verbal abuse. They’re also both in their late 70’s and she sometimes talks fatalistically in regards to her future. Also, she consistently prioritizes her husband’s health over her own. That is concerning to me as her friend. I would like her to be happy and carefree. It is not possible considering her situation which coincided with this pandemic. They too have been super covid careful because of the increased riskiness of a Covid infection with whatever ails them. I really miss my friend. I haven’t seen her since the fall of 2019.

Good bye to 2022! It sucked!

I went to the grocery store today because I really needed food. It was packed. Worst timing. Will prepare better for all future holidays. I pulled my mask on tight and shopped as fast as possible. I chose one particular check out lane (all 4 people deep) because there was female cashier (they’re consistently faster than men) and the last woman on line had two items in her cart. So I got in line behind her. At some point she said something to me and we had a brief exchange. I told her I thought shopping for two items during the mayhem around us was a bold and courageous move. She said it was worse than I knew because she had just driven 45 minutes to get this particular jar of ginger jelly. They didn’t have it at her regular store. Then the line moved and I realized she really reminded me of you. Same size, same walk, and super friendly. She had a really kind face. I almost got teary. So when the cashier scanned her two items I said “Put that on my receipt, she’s good. I wanna pay for it.” And the lady who reminded me of you was so surprised and so grateful and we ended up hugging and then the cashier gave me a bouquet of flowers when I left. It was really nice.

Circular driveway

When I was house hunting to find a house in new town I saw one house that had a 1/2 bath on the main floor that had a black sink and toilet with some sort of metallic print wallpaper. I pretended to laugh at it’s dated-ness but secretly I wanted that house and had no plans whatsoever ever to change anything in that glorious bathroom. I think if I ever get to move to a fixer upper I would like to have some over the top bathrooms. My friend has a small guest bath that has an entire mural wall of hand made jewel colored ceramic leaves. Not only would I do that to my own house but I would buy myself a kiln and painstakingly hand make each and every leaf for that house. Because isn’t that kind of thing so much better when you make it yourself than when you pay someone else to do it for you?

Speaking of looking for new houses….. or just houses…. the husband does not recognize this house in new town, our only house, as the house we live in. He keeps asking me why we are here and not in our real house. I don’t even know what to say to him. I’m not sure what house he thinks is our real house. He keeps talking about a circular driveway (I got nothing) and then about how the garage of our real
House is in the back of the house. (Stepford?) But the people we sold the Stepford house to completely redid (RUINED) everything in that house from the floors to the bathrooms to the lighting so even if I brought him there he might not recognize the house. At least he wouldn’t recognize the inside of the house. And also, I don’t want to go to Stepford or see the travesty that was brought upon our beautiful home.

But panic is simmering at a low level inside of me. While being completely apathetic has had a bit of a benefit for him since he doesn’t seem to recognize how diminished his existence has been, this next level of dementia , I can tell is not going to be as gentle. Because he doesn’t understand what is happening and I see him trying to work it out in his head, milling things over and over again, as if eventually I will laugh and bring him to the house with the circular driveway and the garage in the back and it will all have been a big prank and everything will be just fine. Except that’s not real and now I have to find a way to do that dance where his world is even less based in reality than it has been and I have to soothe him while staying steadfast in this reality. It’s a very gas lighting type situation.

Also, the husband lost his wedding ring. I’m pretty upset about it. Mostly because he would be more upset about it if he didn’t have dementia. It was his Dad’s wedding ring and it’s engraved from his mother to his father. And he wore that ring every single day. So, it’s super sad and disappointing. I don’t have any idea when he lost it. I’ll keep an eye out around the house though. It would be fantastic if I could find it.

TISEvan

(I sent Evan a TikTok that mentioned the DARE program and asked him if recalled how much he loved it as a kid. He replied that he did not recall that. Oh my. That’s one of those memories that make me smile. Here’s what I told him:)

Are you kidding?? You would leap out of bed and get ready in record time because you didn’t want to be late for it. You would look forward to that day of the week every other day of the week. Then one day I was helping out with finger prints at Josh’s school and the cop says to me “I think I have your son in my DARE class”. Dude. He knew how enthusiastic you were. Hahaha. Hahaha. Hahaha. Oh my god. You were such a little character. Now I’m filling up with extra love for you. I hope you feel it.