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TISMF I am tired issue

9:27PM: Husband gets up to use bathroom. I follow from a distance because he doesn’t want me to follow him but I worry. It’s my job. Right? Also, I know he’s tired and should go to bed. Gotta make sure he doesn’t get lost going down the hall. Or fall. I ask him if he’d like to go to bed to which he replies “Why would I want to do that?” When I say “It’s late and you’re tired” he scoffs and starts shuffling back to the family room.

9:43: he’s been back in his recliner for 11 minutes. He leans forward, looks at me and announces with all the earnestness and solemnity of a 61 year old dementia patient “I’m tired. I think I’ll go to bed!”

We shuffle back down the hall. I tuck him in.

Nonsense

So, when I was in the kitchen making dinner the husband hears something about 9/11 on the news and he questions me about which tower fell down. WHICH ONE?? We discussed it. Then he asked if they had finished rebuilding both towers yet. I told him they only rebuilt one and didn’t plan on rebuilding the other one. The expression on his face. He had no idea and it kind of broke my heart a little.

After dinner we are sitting on the couches and at 8 o’clock he turns to me and says “Don’t we watch ______ on Mondays?” Guys …. He was right. Dude remembered the prime time line up but can’t remember anything about 9/11. Make it make sense!

Gaslighting

Right off the bat I want to admit that I am dictating this into my phone as an email so any typos or inappropriate words are the fault of Siri

I’ve been meaning to post for a few days and I’m gonna try to remember what happened each and every day so let me start on the day before my birthday. I was sitting in the family room with the husband and when his computer started shouting out this warning on a loop that something about someone from our IP address trying to download porn and if we don’t call the number on the screen they’re going to disable our Internet It had the mind numbing effect of a nuclear bomb alert ringing out in the background. I tried to call apple but after being on hold and listening to their world’s most annoying hood music for way too long I hung up, jumped in the car and drove to the repair place one town over.

Oh. My. God. The husband had about 50 pages of weird sh!t p!!n open and I had to slide them off the screen one by one and see the graphic photos he was looking at. To say I was embarrassed doesn’t even begin to cover it. The word I would use is humiliated. I cannot believe that I have committed the last eight years of my life to physically taking care of somebody who has so little respect for women. But then as I work through the anger my thoughts begin to evolve and I realized that I was looking at this disgusting dementia habit as something that’s put me down but then I realized is that this is because he is broken and emotionally stunted. It has nothing to do with me. He came that way.

The next day was my birthday.

For my special day I got to take the husband to his new wound care doctor. Now while that might sound like a disappointing thing to do it’s actually great fun for me to do. Now that we have a good Doctor Who is healing him I am excited to see her so she can note the progress his wound is make it. At some point during the appointment the wound care doctor and the foot doctor we’re both in the room and the wound care doctor said to us “I love it when you guys come“ and that just means So much to me!! To think that when the doctor sees the husband’s name on the schedule that she’s looking forward to seeing us?? Yes! It is my goal in life to be the treat of other people’s days. So I told her again how wonderful I think she is

I decided I’d treat myself to takeout for dinner and maybe even the whole weekend (which I did!) because every fucking body kept asking me what special thing I had going on for my birthday. ( WTF?? Do people even know me? ) I’m tired of cooking so this seemed like a perfect fit. Only Evan remembered to call me. (SERIOUSLY???) but Evan asked me if Josh or Marion had called. I said Marion had not and I was pretty sure Josh hadn’t called either and the husband yells with all the certainty of an emotionally underdeveloped 61 year old dementia patient that Josh did indeed call me. He said he distinctly remembered. Ya’ll. So I actually doubted myself there for a tiny second looked at the call log on my phone (and Josh had not called me ) and then I realized that I was letting the dementia patient gaslight me. This is in the top three of the sources of stress in being a caretaker. The constant gaslighting.

Right after I got off the phone with Evan Marion called me and I answered and I said “oh I see you heard from Evan.” We laughed. Josh however did not call me and I believe that is because Evan on the phone actually believed his demented father over me about whether or not Josh had called earlier in the day. To borrow a popular phrase: LET THAT SINK IN. HE BELIEVED HIS FATHER, THE DEMENTIA PATIENT.

It’s great to be a woman. Hahaha. So great.

This afternoon when he rolled out of his room at around 1:30 he pretended like it was so shocking that he had slept so late. This man sleeps for 36 hours for about 1 to 2 times a week these days. This time I called him out on the gaslighting and I said you can try to gaslight me but I know you

Deep

I spoke to Evan on speaker phone in front of the husband and when I hung up with Evan the husband looked up at me and exclaimed “His voice is getting so deep!” Getting? If I were being filmed for a documentary on caretakers we would cut away to me in the confessional shrugging with confusion right now.

I don’t know how old the husband thinks Evan is, or maybe he never just listened to Evan before, but his voice got deep over 10 years ago. It was tender sweet (because he genuinely looked amazed there in that moment) and terrifying at the same time.

I just agreed with him. That’s how I do it these days. It makes everything smoother for the husband but every time I agree with something just for the sake of not upsetting the husband my insides twist into an ever so slightly tighter knot.

I don’t think I’m past the intense anger I have for the original wound care hospital. My stomach has been sick for the last few days. I’m having anxiety attacks. I have to remind myself to take in air every now and again. Coping with the husband is a full time job. I can’t let the negligence of the hospital get in the way of the job I have to do here. The anger will make me sick.

Sometimes I’m afraid to ask what the husband is thinking. I want to know and I don’t want to know at the same time. I just hope he doesn’t get upset. I keep telling him the only thing he has to remember is that I will take care of him.

TISMF all about wound care

So. I was so happy for standing up for the husband by complaining to the patient representative about the poor care he had received at the wound care center at my local hospital. If you recall I kept telling the doctor that his wound smelled bad and she kept telling me she didn’t smell it so I took him to a different doctor who cultured his wound and found a staph infection. I just got the letter from the patient representative that says “while care was found to be appropriate based upon your clinical condition at the time of presentation, we truly apologize for any miscommunication experienced during this very difficult time“. I find this to be condescending and incorrect because the appropriate care for a staph infected wound would’ve been antibiotics which he didn’t get until I took him to a different doctor in a different hospital so I would like to go over the head of the patient representative and write a letter to somebody who will be alarmed at the way he was treated with disregard. Do you know who the person I should complain to would be?

(Then I sent a copy of the letter) Look at this gas lighting bullshittery.

THIS WHERE MY LIGHTBULB GOES OFF- when the response is to rewrite how the entire doctor patient relationship exchange/interaction went down then…. They’re hiding something. It reminded me of when after my EVERYTHING WENT WRONG c-section how the l&d POS nurse responded to me joking about how much I was talking during the botched surgery (I was giving the husband a play by play since I COULD FEEL THE ENTIRE PROCEDURE) she said “Oh? Were you talking? I didn’t hear anything” and that was how I knew I was the victim of medical malpractice then and that is how I know it now.

The more I thought about how condescending their letter was the more I realized that it looked like an attempt to not take any responsibility for anything and I showed it to a nurse friend of mine and she said call a lawyer this is neglect. I’m going to look for a lawyer.

The really really stupid thing here is that if they had sent me a letter that said they were sorry about the way we were treated and if they had said something in place to ensure that no one would be treated in that same way I would’ve just folded that letter up and been very happy and so proud of myself that I had stood up for all the future patients of that hospital wound care center. But they went into denial and in my book denial equals guilt

Just got back from the new wound center and I figured out the thing to say to tell the doctors that you aren’t aggressively treating anymore.

Scene: wound care doctor is telling the foot doctor about husband’s blockage and possibility of doing another attempt at opening up that artery. He looks at me and I say “I would love to be able to do that procedure but unfortunately general anesthesia is too much of a risk for him. He has had lasting effects from the first attempt and is still disoriented. To this day he is unable to get his bearings and doesn’t recognize his surroundings. It’s a quality of life issue”. IT IS A QUALITY OF LIFE ISSUE. There were three doctors in the room (wound care, vascular surgeon and podiatrist) and the second those words left my mouth all three straightened up in unison and I could see the light bulbs going off over their heads. Then the wound care doc spelled out how she was going to continue to care for him without doing anything drastic. It was literally perfect.

I am really grappling with the concept of “palliative” care and hospice care and I am pretty sure it boils down to is that this feels like my choice and I don’t want to have to make that choice. I want things to happen that do not put me in a position of needing to choose. I have that “I just want to do the right thing” hang up and if I am making decisions then there will be options that weren’t taken and I prefer to just handle a crisis after the fact instead of navigating it. It’s one of the few moments in time when I don’t want to be in control.

Life is so hard right now.

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.