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.

Depression 101

We met with Dr. Lindsey, she is young bright and a psychologist. She is doing her stint at the VA Hospital.

She asks Rich if he knows why he is there? He squints his eyes and seems to think. I've noticed over the years that the eye squinting comes just before his answer which is:

"I want to feel better. I just want to feel better. I feel like I am dying bit by bit."

This has become his new mantra of sorts. Anyone asks him how he is or how he is feeling, that is his answer. As I watch the doctor glance at him and scribble notes, I realize that the words are slightly different but the answers have been consistently the same for all of the years I've known Rich.

Lindsey asks him if he knows what causes him to feel this way.

"I don't know. I just want to feel better. I am tired of feeling like this."

She looks at him and me and then prompts him by asking if he read the letter from the neuro-psychologists. He shrugs. Their letter with multiple diagnosis of his medical issues weren't of interest to him. I let her know that but tell her that I did in fact read it to him.

Rich shrugs.

"Rich do you know that you have also been diagnosed with Major Depressive Disorder?"

Another alphabet diagnosis I think. In medical shorthand MDD. A light goes on somewhere in the back of my mind. And for some reason I am not surprised at this diagnosis. It makes sense, I felt his meds were starting to fail him, but as always his re-occurrences of depression always have a way of sneaking up on us.
So it was official. MDD. This explained quite a bit.

Lindsey continues, "So Rich I am here to help you figure out how to feel better and break this depression cycle."

He looks at her and squints again. "I have no idea how you think you can do that."

She doesn't get discouraged. Good for her, I think. Lindsey begins to explain the methods of getting a person out of major depression. She asks questions and he haltingly answers.

It almost seems as if he doesn't want to get better. But then I am not surprised as this is the depression stacked on top of COPD, and PTSD along with stroke and the some level of dementia or cognitive dysfunction. I wonder how in the hell are the doctors and I are going to pull him up and out of this.

Lindsey draws a map for Rich to explain what she is talking about.

"You want to feel better," she says, "this has to do with your thoughts and feelings, we need to help them. One of the ways is to get out and do something. Get away from the bed and be more active."

He grimaces. "I can't. I hit that wall and if I don't lay down, I'll tip over."

She thinks a moment and then asks, "Are you a fall risk?"

"No, I am fine. I just get so tired." I can see by his expression that he doesn't believe her.

Lindsey draws out something on paper and shows it to him.

[I took the liberty of going into Photoshop and making the following graphic to mimic her hand drawing. I chose bright colors because I always want to feel hopeful]

"Your behavior effects your thoughts. If you start here and get moving, doing something different that you used to enjoy then your feelings will improve and your thoughts will improve."

He stares at the paper and I know he doesn't see it.

The discussion goes on for a while. I suggest fishing. Rich says he 'can't'. What if he gets short of breath? I reply we'll have 02 along. What if he gets tired? We have seats in the Subaru that recline. What if he can't ... make it to the car? We bring fold up chairs.

Lindsey uses encouragement and Rich is given an assignment to go fishing. [Now looking at my calendar and the weather, I see no time for fishing.]

Then Lindsey does something surprising.
She turns to me and asks, "How are you doing?"

"Honestly? Some days I have no idea. I get frustrated, short tempered, ..."

"What sort of support do you have?"

"I have a neighbor who will listen. There is a group that meets in Viroqua once a month but generally I have appointments that day and it is during the time I need to be doing chores."

"Would you consider counseling?"

"Can't afford it now that I quit work to take care of Rich." I state.

Lindsey reads her notes and then says that the VA will provide those veteran spouses with care when the veteran is 100%. I am surprised, I knew about that but never had anyone at the VA approach it.
Lindsey says she will look into it. I believe she will.

Our ride back from the VA is long and I am tired after 3 appointments. Rich uses his 02 while he sleeps in the passenger seat. My mind mulls over the depression issues and how can I work to get him to 'move'.

When we get home I tell him that he will feed the two donkeys every day like he used to.

He fires back at me: What if I can't make it? What if I can't walk there and back?

Me: Then I will sit with you in the dirt until you can make it.

Him: What if I get out of breath?

Me: I'll bring you oxygen.

Him: Oh like this is going to cure me huh?

Me: Nope. But if you keep laying in bed all day long and never moving, you will make yourself worse, your heart will fail, your lungs will fail, and your mind will fail. Move it or lose it. You tell your mom to move, you need to take your own advice.

Him: I'm going to bed.

Yesterday though, I stood my ground and he did walk to the shed and get flakes of hay to feed Thor and Bob. It took an extra hour or so of my day. But it got done.

Depression is an ugly thing.

No Easy Answers

We've fought through throat cancer treatments and recovery. We seemed to do so well after that until the stroke came to strike out hard.

Well, the recovery physically from the stroke was amazing. Rich could walk, and move with no after effects. His speech had issues but most people can eventually get what he is trying to convey.

Then winter came on. Typically winter is his most difficult time anyway. Mentally it is draining because the weather is cold and the days are dreary. However COPD plays a huge factor in this too. 
Too cold? He can't breath outside. The cold air sends his bronchial tubes into spasms and it feels...well. No other word to describe it, like suffocation. Even with something over his mouth periodically to warm the air. Breathlessness or dyspnea is not a nice thing to feel. 

During the extreme cold days I have done the chores by myself. Even I have a bit of trouble while hauling a sled full of hay up the where the two of the bulls are kept. It is a steep walk in the summer and the winter. Extremely hot humid air and extremely dry cold air are enemies of getting your breath.

Depression has set in. It is like having a huge Black Cloak hanging over his head. Most mornings I pour his coffee when he gets up and give him a kiss. The he sits and stares out the window. The difference now compared to a year ago is the blank look of nobody there when I glance at him. I ask what he is thinking and he blinks as if the sound of my voice brought him back from....what he describes as 'No Where'.
He visits No Where quite often these days.

And when we do converse he talks about how he is no longer of any use, he has no purpose. If he weather is good enough for him to venture out and help with the morning chores, he gets dressed and goes about the morning routine.

When we come back in, he sits and stares off into No Where. Eventually he says that he *is not worth a damn* and gets up. He walks to the bedroom and goes to bed asking me to wake him up when it is time to water the stock.

Tremors. I'm not sure what to think of them. His father had what was called "Essential Tremors".  Rich has had them for a long time but they were a problem. Now they are in a very severe way. He can't carry a coffee cup across the room without spilling a trail of coffee. He feels terrible about it.

As his COPD meds are increased, I see a direct increase in the tremors. I looked up the causes of ET and found that COPD meds contribute to it. What a mean thing. COPD requires certain meds which in turn can contribute to worsening of the ET.
NIH had articles relating to the fact the ET are familial. In other words, it can run in the family. Rich's father had ET, Rich's mother has ET. It affected his fathers voice, it affects his mother's voice. At the young age of 68, it is affecting most actions that Rich takes along with his voice at times now also.

COPD unto itself is an insidious disease that is not curable. The doctors tell you to stay active. Simple to do if you can breath. 
Rich does stay as active as he can.

But the viscious downward spiral of COPD, the results of the stroke, the tremors, and feeling lost all add to a fairly significant winter depression. 
He feels somewhat hopeless and helpless. 

His only escape is to go sleep. And sleeping most of the day and the night do not help any of his health issues.

I find it interesting that the doctors say: You are doing so well! You made such a miraculous recovery from all the things that have been thrown your way!

To this man, each fight he's gone through has taken away a part of what he wanted to be and defined himself to be.
One counselor asked him to consider the fact that this would be his new normal.

I understood where she was going. Accept this and move forward.

I may be the type of person who can do that. But he can't.

He has always been a 'fixer'. If there was something that should be fixed, he'd fix it. Replace brakes? Muffler? Build a new and improved dog house? Insulate a water tank? All these projects are partially started and now sit gathering dust. 

He can't fix himself. He feels if he could understand exactly what went wrong, he could fix it.

In the past two weeks he has had other slight incidents that lead me to believe that he may be having a TIA. It happened quickly and was gone. Poof. 

Before I get told to rush him to the ER. I have. The results have not been exactly stellar. 
To be fair, the local hospital did do a good job in making sure that he was transported to the nearest trauma center. But only on orders from the VA.

Is there an easy answer to all of this? No.
Of course not. 

The End Game

Well here we are. The last entry in this blog was 8/16/16.
Rich had just completed one of his last check ups with the oncology department.

Let's jump forward to present date.
12/17/17.
On May 6th Rich had a stroke.
I wrote about it afterwards on May 12th.

I kept up with updating things and how I resigned from work 3 days after the stroke to stay home and assist with my husband's recovery.
He is an amazing man.

Cancer was big and scary. And it still hangs over our heads like the Sword of Damocles. Will it come back? Can it come back? Will we fight with it? Well, the answer to the last question is no. The other answers are unknown. Who knows what is in the future for us right?

I am now an unemployed caregiver. That is fine, everyone says how nice it is to be 'retired'. I'm not sure retired is the proper term at all.

Caregiver: A family member or paid help that looks after a sick or disabled child or elderly person.
Retired: Ceasing work. Having finished one's active working life.

I think unemployed caregiver is the proper term. Let's add. Farm help, chore person, house keeper, chief cook, and bottle washer. Appointment maker and so on.
Actually the whole process has been fairly good. Financially things are a bit tight, but all of our years of being frugal has paid off. We owe nothing on our vehicles and the only item left is the remodel loan.

I had felt that I'd be able to return to some sort of work by now. But that isn't happening.

Rich's COPD is not getting better. I don't know if it is related to the stroke or just the insidious disease marching down its timeline of destruction.
I know that sounds gloomy, but I am being pragmatic. It has always been the 'elephant' in the room. There is no cure and the end result is death.

So what is our next Long Road?

Our next long journey will be dealing with the after effects of the stroke, the continuing task of living with COPD and how we end up dealing with our lives until the end.

One thing we are not afraid of to discuss in our little house is death. It is there and it will be the end game for all of us.

So I will continue to write things here regarding how we deal with health issues and the end of life.

Appointments and February Blahs

Rich still feels as if he has no energy and he is not really gaining any weight back.  This of course is a hard time of the year for him anyway.

Right now he is having the doldrums.  The overcast days have got him in a down mood.  Well, as he said. "I'm depressed.  I'm not getting better, I'm not getting my energy back."

When he is like this, there is no discussions to be had.  One just has to listen.  I can't point out to him that he is still alive and that he did have a great day out on Saturday when he went to an auction with the neighbor.

These things don't really matter much to him at this moment.  It is how he feels internally what matters.  He has stopped doing Tai Chi. I tried to get him to do it again.  But he just gives me the look.
He is supposed to be doing physical therapy but he has dropped the ball on that too.
  
I think part of it is that it is so muddy that doing anything outside right now is a huge chore.  When it was so cold two weeks ago, he had some trouble with doing things outside and breathing.

He has COPD and I think that the Throat Cancer and treatments may have made it worse.  That makes doing daily things a lot tougher. And unfortunately he feels that he should somehow be much better.

I have pointed out to him that he actually is doing more than he was pre-cancer.  But he can't see it.

I know once the winter blahs go away and the weather gets nicer, he will go into his 'spring' mode. At least that is what I am hoping.

We go for the CT scan and meet up with the Eye Doctor tomorrow.  I will ask the doctor how long of a recovery time he'll have with the eye surgery.  Rich is under the impression that he will be back at things the next day.

I am trying to be very positive for Rich and sometimes getting the dark look of gloom doesn't make it easy.
We take this time of year one moment at a time.
One foot in front of the other.

They will get along

Today we met with a Social Worker, a Resident Doctor Pete, and, Dr. LaConte.
I had a bit of a laugh when the Social Worker handed me her business card.  Sarah Rogers.
Let's just say it is a family name and Rogers was my maiden name.

Dr. Faris, true to his word was there.  He took a stool and sat quietly in the corner as Sarah and the Doctor Peter talked with Rich.

It was somewhat like an interview to see what issues regarding his health he would like addressed.

Sarah was direct and asked fantastic questions of Rich about regarding faith, spirituality, and medical concerns.
She was able to get Rich to give her a lot of information.

I'm not going to repeat our 2 hours with the doctors, but I will say I used a digital recorder so I can review the meeting. 

Struggling with lingering side effects of the radiation and chemo were his main complaints.  'Finding the new normal' was a key phrase.  Rich wanted to find the old normal.  His wish is to get back to what he used to be.

I'm not sure that is ever going to occur.  But that is my unspoken opinion and I will support Rich's desire to get back to the old normal.

Another main complaint is his balance.  We spoke at length about that today.
I think I haven't realized how much the loss his ease of footing has effected his mental well being.


I know Dr. Faris expressed how interesting it was to sit back and observe and not have to be involved in the conversation.


After nearly two hours of talking we are going to work on the balance issue first as that seems to be a key to making Rich feel more comfortable.

Dr. LaConte thought that Physical Therapy may help. 

Ear/Nose/Throat will be looking to see if there was any inner ear damage from radiation therapy 'scattering', as well as a follow up to check where the tumor had been on his tonsil.

There was so much covered by everyone it will take me listening to the meeting at least one more time to make some more sense out of it.

On our way home Rich talked about how much he like Dr. LaConte and how he felt really comfortable with him.

"I think we will get along just fine."  Rich said.

Impatient Patient.

Well as Rich recovers we hit small set backs and tiny steps forward.
For him though it doesn't feel as though he is healing at all.

Part of the issue is our very hot and humid days.  They sap the strength out of patients who have had radiation treatment.
No matter how many times I remind him of the fact he remains unconvinced.

In his words he wants to recover and be 'better than before'.
However, given his age and health condition prior to treatment, that is a bit of a stretch and one he is not willing to accept.

We had several appointments this week at the VA hospital in Madison.  

His eye glasses were ordered which are good, he is having some trouble with his vision.  However we couldn't get any answer regarding his cataracts and what was the criteria for that.  The technician just stated that he would get a follow up appointment in about 6 months.

Pardon my skepticism, but since they were not able to locate his prescription from the 'outsourced' doctor, I know it will be up to us to follow up.
The eye clinic apparently is so overwhelmed that they cannot keep up with their services to the veterans.

Being a patient is a full time job, being the care taker of a patient sometimes seems more than full time.

We will be going to see Dr. Feris once a week for a while to try and work with the depression issue.  Dr. Feris is incredible and really knows his stuff.  However Rich has to cooperate a bit by not concentrating all of the time on 'the bad' in his life.

I'm not in his shoes, but I can see that a more positive attitude at this point is what he really needs and I don't know how to help him find that.

We were given some homework which I felt was rather helpful.  
I brought out the papers the last night and asked him to tell me what happened today that he felt pleasant.

Rich gave me a look.  And said, "Put that away, it is stupid, and I'll do it if I feel like it."

I suppose from my view point, I get discouraged with that attitude as it won't assist him in getting better at all.

When we talk about the Grand children or time spent with the kids, he positively lights up.  So I know that not everything in his life is negative.

But I tire of the same answer every single day.

"How are you?"
Grunt and a dirty look.
"Not worth a sh*t," is the daily mantra.

He is an impatient patient, looking for a fix that isn't there.

Dr's Feris and Cordes still feel part of the issues are stemming from biological problems and no mental health medication is going to fix that.
I agree with them 100%.

Goal.
Get Rich off the farm and engaged in doing something enjoyable.

Follow ups and after care

Things I learned today.

Swallow/Speech Therapy.
Head and Neck Cancer patients must always do swallowing exercises and eat small meals often.  To miss the exercises or not eat a patient will run the risk of losing their ability to swallow.
This is forever.  Not just during the treatment and a while after the treatment.

Radiation damages the muscles of the head and neck.  In order to keep them working, the patient needs to work at it.  For the rest of their lives.

In the back of my mind I knew this because I'd done research at PubMed and also had been in contact with other HNC patients through a website called CancerCompass.

Rich had been doing very well until he hit a road block with his blood pressure and some stomach issues.  We had gone to the VA clinic in Baraboo and the doctor a few weeks ago had felt that the stomach/bowel issues were from a change in medication and diet.  The first line of treatment is to take away the offending medications which could cause the problem.
However, Rich was still having some pretty intense pain in his lower left quadrant [bowels] and intermittent diarrhea.  

We spoke with Dr. Rahim and Rich explained what had been going on.  
Dr. Rahim thought for a moment and then explained that Rich might have had a shock to his intestinal system when Miss Peggy was removed.  
This could have caused paralytic ileus, or a slow down of the squeezing motion [known as paristalsis] of the intestines to move digested food.  
This in turn could have caused a partial blockage of the intestines.
To confirm this, we went to X-ray and indeed a partial blockage was found.

So I/we learned that the digestive system can have a shock and get fouled up. 

Cancer and Depression.
Well these two things can go together.  One of the issues is that when you finish treatment, you figure it is over and you are going to feel much better right?
Not necessarily.

Rich had a few weeks where he did feel much better.  It was amazing, he felt alive and energetic.

Then things went a bit south.  The energy level dropped drastically.
Let me add here that at this time our weather turned very hot and very humid.  Very hot conditions are hard on anyone, let alone a cancer patient.

Recovery from HNC treatment can take a long time.  Life in many ways does not return to pre-cancer normal.

In fact you should have a mindset that life after treatment may just be your 'new' normal.  

So combine feeling terrible, with low energy, pain that you don't understand, and the inability to get things done that you want to do and...
depression sets in.

The journey through treatment is only the beginning as the road to healing is not an easy one either.

As one of the nurses told us today.

"One Day at a Time."