The 4th means different things to everyone...

Each Holiday marks another one that we are not together although we never did much on the holidays. You preferred quiet and solitude.

I'll never forget the first 4th we spent together. I had a long weekend and drove 4 hours to spend it riding with you in what is now the Kickapoo Valley Reserve. 

We sat around the campfire with our mule friends at Mule Camp [it still retains that name after 30+ years]. You stated that you needed cigarettes. You were almost out. 

Since your truck was hooked up to the trailer I offered to drive you to LaFarge a few miles away to the ZZ Stop for them.  This was our third 'date' weekend.

I drove past the LaFarge High School as darkness fell and suddenly the skies lit up with fireworks, big bangs, the kind you could feel in your chest. 

In one instant you'd gone from a joyful date to a man who looked like he'd seen a ghost as you tried to make yourself small and contain whatever monsters took over. You muttered, "Oh Shit." By the time we got to the gas station, you were too shaken to get out of my car.

That was the first time in my life that I purchased cigarettes. 

We got back to camp and you went inside the camper on your truck without saying a word to those around the campfire. 

I said goodnight for the both of us and mentioned the Fireworks. His friends nodded and asked if you'd be okay. I nodded and followed you into the camper.

Right then I knew I had to help you through the moment.

I sat next to you on the bed and put my arms around you. "You are safe with me. Always."

This was my first experience with a full meltdown with PTSD caused by the trigger of fireworks. That was the last time we went anywhere on the 4th of July.

Everyone that knew you, knew that noises like that would set you off. 

That look on your face that night in the car introduced me to a different world that most people never get to see. I will never forget it.

I sat with you that night with my arms around you whispering that you were safe and that I was by your side.

My willingness not to judge you or fear your mental health issues was the glue that held us together. You were partly broken, but that was okay with me.

I do like fireworks, don't get me wrong. But each time I hear them on the 4th, it pulls me back to that night and how it solidified our relationship.

Until yesterday, we'd receive phone calls alerting us by close neighbors that they would be setting off fireworks or they'd be out target practicing. They all knew you and how you reacted to Fireworks. 

The silence of that was louder than the fireworks.

This is a Long Journey

In 2015 Rich went through lengthly cancer treatment for throat cancer, Stage IV. 

In 2017 Rich had a stroke, in 2018 he suffered from a PE. A double Pulmonary Emboli. Each of these medical instances could have ended his life.
He also has COPD. According to the medical notes on file, it is Stage 4.

The doctors think he is amazing as he has really beaten the medical odds. 
He also has MDD which is treatment resistant. [Major Depressive Disorder]

Rich can speak fairly well and sometimes he does lose what he wanted to say or the words evade him. We've been a close couple for years so generally I understand what he wants to say, but let him work it out unless he is too frustrated. Then I help him. His memory of things in the recent days evade him too, as well as those memories from just a few years ago.

These things are not really important. NOT to me. What is important to me is quality time together.

Our meeting with Palliative Care this week was very emotional for him. He knows that his COPD is an end game for him and he has always been rather Cavalier about it. Thursday he was not.  His breathing is a struggle for him and it limits his activity.
His MDD is a huge black wall that keeps him from finding any joy in his life -- this he tells his doctor.

Finally and tearfully, he admitted that he'd just like to go to sleep and be dead. He is not suicidal but he sees no point in continuing in a life where he loses memories, struggles to breath, and has no motivation for life. 

Can you imagine how awkward it feels for him when he ... the tough guy... breaks down and cries while on a Video Appointment with his provider? His Palliative Team sat quietly and let Rich gather himself. Of course she asked if there was any thoughts of suicide and he said emphatically NO. 

He is tired. Tired of not being the productive go get 'em guy that used to whip out the chain saw and cut up fallen trees. He is no longer that dude that had never ending strength and energy. He is tired of being tired. Tired of his words not forming and lost thoughts.

We discussed second opinions for his MDD and other more radical treatment. He just asked 'Why?'

This is the time of year that his MDD really kicks in. The days are shorter. The dark is longer, even with a SAD light, his overall mood is darker.

His Palliative Care doctor is adding a low dose of morphine twice a day to his meds. 

We are marching towards the end in a steady fashion. 

While visiting his Community Care Primary Doctor last week, he mentioned the very same thing. Wishing he could just die.

His PCP said she understood but she felt he shouldn't say it in front of his family as it would cause them pain.

I looked at her and sort of shrugged. She is a doctor that works in a clinic and doesn't live with a patient like this day to day. 

His comment is not painful to me at all. It is the truth. I listened to his mother say the same thing while she slowly died from Stage IV kidney disease.

Just let me go. 

In Palliative Care, the doctors want to make him comfortable as his disease progresses. His Palliative Doctor and others would like to see him try some of the newer treatment for his depression. Those treatments would require 3 visits per week at the average of up to 6 hrs per visit at the VA. That would create 12 hour days for us with a 90 mile drive each day. He said NO.

Regular doctors want to 'fix' things, it is in their nature. His PCP was willing to get referrals for all sorts of tests. Rich said no. He didn't care if his heart was giving out. He lifted his bracelet and reminded her that he had a standing DNR order in case of heart failure.

So we wait until next week and see how the morphine goes.

And of course, more Lego building. He seems really fascinated by it and it is an activity, oddly enough, that makes him laugh when I screw up. Last night he even put a few small pieces together.
To me? 

Priceless.

Sorting it out

Over all Rich's health physically since the knee surgery to remove the nasty patella bursa, he has regained mobility and some strength in that knee. We have been seeing PT twice to three times a week and it is obvious to me that he needs to be going back to Pulmonary Therapy.

I try to bribe him into moving about and doing things. But he is focused more on either sitting at the kitchen table and staring out the window [when I inquire as to what he is looking at he seems to come back into the present world and blink...his answer? "Nothing."]

Part of this is the damage done to his brain from the stroke in 2017.

One of the very hard things to separate out with all of Rich's past history of PTSD and MDD is the lack of motivation which was there pre stroke but is now much worse.
In fact the medical field studies Apathy and Hypersomnia. Both of these neurological issues can happen after a stroke in the front part of the brain. Let's toss in some other medical issues and the patient becomes very 'complicated' as the doctor who did the knee surgery said to us.

Is it depression? Is it PTSD? Is it neurological? Bradycardia? COPD? Is it the Pulmonary Emboli? Painful bursa? Is it imagined? Is it real? What is it?

Hypersomnia is just a fancy word for being tired all of the time. Rich had this during his last bought of severe depression. He keeps telling Dr. Schiffman that he wants to feel energetic and motivated yet he just feels tired and can't seem to get out and do anything.

Since I live with Rich daily, I see little bits and pieces that the doctors don't see.

Going to Culvers last week, I handed him an empty soda cup so he could get his Pepsi. I paid and then walked over to where he was at. He stood in front of the soda machine and held the cup.
"I should know this," he said. There were people waiting so I said, "Let me."
I took the cup and filled it and handed it to him.  He shook his head.

When we sat down to eat he mentioned the soda incident and told me that it really bothered him.

There are small things that happen and finally we got into a discussion one morning.
He said he was 'Dizzy'. He'd said that often to Dr. Schiffman and to his therapists who took B/P, 02 readings and came up with normal. It flummoxed most of the doctors.

So I asked Rich.
"Tell me about Dizzy. Is the room spinning?"
No.
"Do you feel like you are going to barf?"
No.
"Does it feel like you did when you had Brain Fog from chemotherapy?"
He glanced at me.
Yes! It feels like I am not connecting! I don't like it.
"Your brain suffered a pretty bad injury in 2017. So it has troubles on some days making sense of everything."
I don't like it.

I feel like I am watching a slow motion crash happening one very infinitesimal step at a time. However. At least I am here for that journey right now. I can be a part of it with him.


There will be days of heartache and frustration,
anger and resentment...

laughter and love
joy and sorrow.

One day at a time.

The letter & Appointment

The letter regarding Rich's test results with Neuro-Psychological testing came today.
The letter diagnoses Rich with a major neurocognitive disorder called 'dementia'. The severity is considered mild at this time.

The letter goes on to list the main causes of his diagnosis. In some ways I am glad the list is there and in some ways I find it offensive. In one hand I knew that his health issues are all contributors to his 'Vascular Dementia' however having it printed out in black and white seem to be a shock.

Depression and PTSD are major contributing factors but cerebrovascular disease are the main causes. Yes, I knew that.
The facts are there.

I asked Rich if he wanted to read the letter. He waved a hand at me. "You read it, you can understand it."
So I read it.
The recommendations are fairly straight forward. Exercise, quit chewing tobacco [he is trying when he remembers], eating healthy [we mostly do], speech therapy, language therapy to help practice communication skills, and thinking skills.

Exercise. He preaches it to his mom. And when I ask him to do something physical -- he can't or is it he won't? I think it is *he cannot*. He says that he feels exhausted at all times. He says he can't, he can't do it. Over and over. If I push for him to do something physical he gets angry and goes to bed.
I get tired of pushing and asking him to help.


During the afternoons now, he watches Netflix and sits on the edge of the couch with the volume turned up nearly as high as it can get.
I can't go back and change his lifestyle that lead to this place we are at now. I can only try to deal with it one day at a time.

Yesterday we had an appointment with Neurosurgery. We were nearly late when we arrived at the VA so I hustled us to the floor where we'd seen Neurology last year only to find out we were in the wrong place. Again, we rushed down to clinic B.

After the vitals were taken [his blood pressure was high] we were ushered into an exam room.
The doctor sat down and I innocently asked why we saw him in this clinic rather than the clinic upstairs.
He very pointedly told me that HE was Neurosurgery [emphasis on surgery]. Upstairs was Neurology, they were vastly different.

I explained that we thought we were there because he was supposed to see Neurology for a follow up in one years time. [Emphasis on Neurology]

He batted an eye and then asked Rich if he knew what he was here for. Rich glanced at me and then the doctor. He shrugged. "Because of my brain?"

The doctor launched into his spiel. "The CT scan you had done a few weeks ago show a change in your brain aneurysm. We are here to discuss ways of dealing with that. Did you know you had an aneurysm?"

Rich glanced at me. I answered, "Yes Dr. Kabbani who did the surgery to clear the clots in his brain told us that last year in May of 2017. The neurologist that we saw last year at the VA also reviewed it at the time. The aneurysm is in the Circle of Willis and it is a fusiform aneurysm. We were to follow up with Neurology one year later."

Rich added in his halting aphasia way that he knew the Doctor had to go in more than once to get stuff out and that his thoughts and words were scrambled.

The NeuroSurgeon turned and began typing rapidly. He started to read Rich's history. I pursed my lips. This doctor hadn't done his backround on his patient. My confidence level in him changed. What happened to cause this appointment? Did he note that Rich had a rare aneurysm? One that would be an interesting case to 'fix' surgically? The doctor was a UW Madison doctor, the UW is excellent and is also a teaching hospital.

Finally he turned back to us and said, "I see, last year you saw Dr. ---- in Neurology and he consulted with Neurosurgeon ... Dr. ---- and that doctor said nothing needed to be done at that time."
He frowned and then continued, "I'll put a call into Dr.----- and see what he recommends for this change in your aneurysm."

Rich stared at him and then the doctor pulled out a sheet of paper and explained to Rich what his odd and rare aneurysm looked like and how difficult it could be to 'fix' because it was between two major arteries that fed the brain.

"We may need to do an angiogram or another CT...," he went on, "..and then make some decisions..."

He made a quick exam of Rich and his reflexes then asked a few questions. He then reiterated that he'd let us know what was going on.

I stood and looked the doctor in the eye. "You do understand that my husband has been recently diagnosed with Vascular...." I let my words fall off.
He nodded. "I read that."

"You have read his history and health then right?"

The doctor nodded.

I don't think he really had. I think he saw an opportunity to see and possibly do surgery on a rare case. I think Rich's brain was of interest to him. His demeanor was not compassion for the whole person.
I decided that I didn't like him at all.

We left with no plan of action and we felt as if we'd been broadsided.

On our way home Rich said, "My life stinks. I have no life. I don't think I want that guy inside my head."
Me: Then he won't be.
Him: I mean what if the thing blows up? I mean what if he fixes it and I keep on living like this?
Me: Well he didn't really end up talking surgery, but I wonder what the risks are.
Him: Me too. What if he scrambles me more.
Me: Won't happen. I won't let him in there if those are your wishes.
Him: I'm dying a little at a time anyway. I'm so depressed.
Me: Silence.

Him: Do you suppose I can go to the doctor just ONCE and get some good news?
Me: Silence again.
Him: What next?

Rich reclined the seat and went to sleep while I drove.
I thought about the letter and how we were supposed to push and pull, exercise, OT/PT, mental exercises, ....push push push.

Indeed.
What next?