Testing, testing...

Monday morning was a stress test. Working with a person who has severe depression is and can be very frustrating.

I got him up early so I could get him to take a shower.
"I can't, I have to lay down."
This is where it gets frustrating.
I put my hands on my hips and feel the anger grow. I get a bit snarky, "So why do you need to lay down? Are you dizzy, tired, out of breath..." I take his 02 levels and they are fine.
In my mind that says it is the depression talking. He needs to move, he needs to keep moving.
So I become the bad guy. "Your 02 levels are fine, your blood pressure is good. Do you need me to get the shower chair and help you? Are you dizzy, why do you need to lay down."

I can't help myself here. I am trying to get him ready for a doctor's appointment. I tried all day yesterday to get him to shower and he was too tired. Yet he could watch the streaming on the small flat screen TV for 3 hrs.

He gets angry with me, gives me the look, and goes to lay down. I stand in the bedroom door and fume. I look at the clock, he needs to shower.

That is how the mornings go with appointments at the VA. Nudge, push, push, nudge, frustration and stress at just making the appointment on time in Madison which is 89 miles away.

The stress test came back 'abnormal'. That is all the tech would say. Cardiology called yesterday morning and scheduled an echocardiogram. I wonder how abnormal is really was if the echo is scheduled nearly a month away.

As is our normal routine when not rushing to get ready for an appointment, I left hay out for Rich to feed Bob and Thor. I reminded him that I had an appointment with the manager for his mother's apartment lease.
I contacted the attorney who will be her guardian to get some guidance and told him that I'd bring him lunch back from The Corners Restaurant.

When I returned home, he had his boots on, but was sleeping. I woke him up.
I gave him his burger and fries and then asked how feeding the donkeys went.

"I was too tired," came the answer.

I was quiet for a bit while I made copies of the POA paperwork and arranged some papers for him to sign regarding his mother's paperwork for elderly housing. The lease would not have to be signed until she had the new guardian in effect. That was a huge relief.

Finally I said, "Oh. Okay. I guess that is why they brayed when I drove in. They are hungry."
I got a nasty look and he sighed. "I better go feed them since somebody wants to play psychiatrist and tell me what to do."

I stack my copies of paperwork and shrug.
He stops at the door, "Is it hot out?"
Snarky remarks want to fly past my lips...but I press them closed and then say, "Well it isn't too bad."

He feeds the donkeys and comes in with a huge sigh. "There, don't I look cured! Don't I feel awesome? Don't I want to just run up and down and be fine? Oh look I am all better!"

Picture these words with aphasia and it actually is more drawn out and difficult. But I get the jist. He is angry at being made to move against his will. He wants to just go to bed, which he does for the rest of the afternoon.

I gather up items to go to the forest and go fencing. In my back pack I throw some toys. I won't have time for it,....but you never know.

We ... he argues with me again later after I draw out a map of how I am fencing. I tell him to get on the 4 wheeler and I'll show him.
"Quit trying to be the stupid doctor, I just need meds to make my head better. If my head is better I'll be better. Just stop it."

I let him blurt it all out and listen. I want to say to him that since he has gone out to feed the donkeys daily he has improved. He has anger which is better than two weeks ago when he had no emotion. He takes it out on me of course and I sit there and want to point out the good things that are small baby steps. He won't hear any of it.

I finally tell him that I'm going out to the garden. I leave and am there until nearly dusk.
Surprisingly he does come out of the house and onto the porch. He pulls up a chair and we are friends again as we quietly snap green beans.

Oh yes.
I did have a moment or two for some silliness.
And it makes me laugh.

Toys given to me by neighbors and other kids....
why not? We all need to smile and laugh.

Testing? He tests my patience. It is a good thing I have a LOT of it.

Offering some hope

We met with Rich's PCP...Primary Care Provider this week.

She is one very straight forward person and she also tells you like it is.

"How are you today Mr. Ewing?"

Rich shrugs. "I'm dying bit by bit."

She answers, "We all are, but I understand how you are feeling. Your meeting with Neuro-psychology flagged you for severe depression. We need to turn that around as quickly as possible."

Rich stares at the floor and then something far away. "Nothing can make me feel better, I just want to feel better once, you know?"

She nods. "Of course you do! I've put in a call to your psychiatrist and he needs to review you AND see you ASAP."

I interject. "I wonder if his meds don't work any longer. Rich has a history of his medications for depression working well for about 6 to 8 years...and then..."

She nods and types swiftly, "You are absolutely right. We may end up with a different regime of meds. And speaking of that we are going to stop the Tamulosin right away. I think you have had nothing but poor reactions to it..."

I pipe up. "I know Rich doesn't want this, but can we look at oxygen therapy? Lately he can't function very long without going back to lay down with his CPAP and 02. He feels extremely fatigued and 'out of it'."

She nods sand turns to Rich. "We will test you, and your heart, your lungs are not elastic so you may need oxygen to keep from damaging your heart, lungs, and brain further. Are you open to that?"

Rich makes a face.

Doctor pats him on the back and says, "Struggling to think, to walk, to breath, is no fun. This will help."

I point out that since he spends up to all but 4 to 5 hours a day with his CPAP and 02, that he is already ON oxygen. She agrees and I see Rich make that connection.

He asks about the aneurysm. She looks at it and says, "If they want to do it, go for it. IF you go in alive you come out just fine." She is not being cavalier, just straight forward.

She types some more.
"I'm ordering a stress test for your heart. I'm putting in for an immediate re-eval of your psych meds."

Then she turns to him. "You know, you are dying, we all are, but I think we can make some adjustments so you don't feel so depressed, so tired, and so frustrated.
I'm going to put you on Aricept for your dementia. I see you will be visiting speech therapy, OT, and cognitive therapy."

She raises her hand and draws a line. "I want to hold you here for along time. Mr. Ewing, you will live and you will feel better. You have a good partner and wife, she is looking out for you."

We leave and I think we both feel a bit of hope.

Is it real hope? I believe so. Because not believing it is not going to help us.
Hope always helps.

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?

I am Nowhere.

So on the last check up with ENT a week ago there is still no re occurrence of cancer. Everything looks 'good'. 

We both sighed at that thinking soon the endless appointments and follow ups regarding the dreaded 'C' word would slow down to a six month break.

However Neuro-Surgery called and scheduled a CT scan to check out Rich's brain and to see if there were any changes to his brain aneurysm. After we got home a Neurosurgeon called to let us know that no significant changes had occurred but we were still scheduled to see them for his one year follow up.

The results from the tests with Neuro-psychology were in. Cognitive Disorder...Vascular Dementia. The full results will be mailed to us in two copies. One for Rich and one for me.

I think they will write up and include their recommendations. There was almost too much information given at our meeting of nearly 90 minutes.
My take away was the following.
Are POA's in order? Yes.
Driving? That will be addressed with OT/PT.
Could I now prepare his meds? Yes.
They are ready to invoke POA for Medical as they don't feel Rich can make decisions for himself.

I did explain that all of our decisions were made together and had been since he'd had cancer. 
The best thing I liked about these doctors is that they looked Rich right in the eye and explained things to him. They also confirmed that I understood what was going on.
I'd already had an inkling of the possibilities before the appointment.

The signs were all there. The confusion, the far away looks, the getting lost in 'No Where Land' as Rich had told me over and over again. The lack of ability to make an easy decision like to call to have his truck fixed, or to arrange to have some cattle shipped is now beyond his reach and thought process.

As I explained to our Farmer Friend, I wanted to let Rich feel like he was making the call, that he was still in charge. But I realize now that he may not be capable any longer. He has become mostly apathetic to what is going on around him.

It seems that decision making is too difficult for him. I've resisted that thought, I've resisted that conclusion and I had even decided that Rich was just too lazy or unconcerned to make these important decisions. I'd leave a phone number in front of him to call for his truck. He'd push it away and not look at it. I nagged, cajoled, and begged for him to call.
I got an irritated look in return and then nothing.

The shock for me is that it was there in front of me and I didn't want to believe it. 

Yesterday morning I felt lost. I felt panicked with the sudden realization that indeed my world had flipped again and so had Rich's. He was slowly drifting away into a place where I couldn't find him.
He can sit and have coffee with me in the morning. But I look at his face and find him not there.
His eyes are blank.

I ask him what is on his mind. And he blinks, then looks at me with a question on his lips and says, "I am nowhere."


My husband is leaving me. No dramas, no slammed doors - well, OK, a few slammed doors - and no suitcase in the hall, but there is another woman involved. Her name is Dementia. ~~ Laurie Graham.