Some days...

Every journey is one of learning and exploring. Some journeys we don't want to take and don't wish to explore.

Reactions to meds, swollen legs and feet, insomnia, crabbiness, and forgetfulness are all things to be dealt with daily. This is our second bout with profound edema in the legs and all the way up to the thighs. 

Someone hates the meds for edema and complains loudly. 

I wasn't prepared for the aged toddler to become so frustrating. 

You need to elevate your feet.

No. I don't want to. My feet hurt.

I know, nurse Jason said you needed to elevate your feet, I can help you do that on the couch or on your hospital bed.

I don't want to.

You need to eat a banana a day when on this medication as it takes potassium out of your system.

No. I don't want to. Put my compression stockings on.

Sorry I can't, your legs are too swollen for that right now. They won't fit.

Crossed arms and a look. Then.

Can you get me some cookies? 
or
Make me some popcorn...I'm hungry. I want a snack.

You just ate breakfast.

I know, but I want something.

The lights go on in the middle of the night and he sits on the edge of the bed staring at the wall. 

I get up and ask what he needs.

Nothing.

Why are you up and sitting on the bed?

I don't know.

Why don't you lay back down and get those legs up?

I can't.

I roll my eyes so he can't see and sigh. Then I say. 

Please?

I can't.

Why not?

Cuz I can't.

And that is where we leave it a 2am. I start to explain why he needs to have his feet up and why the edema is making it hard for him to breath.

I get a dirty look.

He lays down for a while and then gets up again turning on the light. 

Come and put my socks on I want to get dressed and have coffee and breakfast.

I check my cell phone. 3:30AM, and I sigh. 

This is part of the Caregiving that no one tells you about and that your family doesn't want to know about.  These are experiences that no one can imagine ever happening to them. I didn't. I thought I was a noble person taking this job on. And it IS a job.

He doesn't understand that his lack of oxygen is causing his confusion and his poor judgement.

On the days he is doing well, he can be with it and things feel almost normal. On the bad days, nothing he does makes sense.

Nothing I can do for him pleases him either. 

Yet I know that he is a presence that I will miss when he is gone. I use curse words in my head at 3:30 in the morning. My temperament is not improved with lack of sleep either. 

I have a huge list of to do's to keep up our place, to feed us, to house us, to care for the animals, pay the bills, and make the calls. I get angry...

The Toddler is only interested in himself tonight. 

My frustration takes over. I am tired, I am irritable, I am short tempered.

~~~~~~~~~~~~~~~~~~~~~~~~

Note: The days that are like this IS not an everyday occurrence. These are days when he suffers lack of sleep and a lot of aches and discomfort.

When I first wrote this we had just come of from 48 hours of poor sleep...meaning less that 4 hours of sleep for two nights in a row. Rich's swollen feet and legs started aching badly and the more he tried to get comfortable the less comfortable he was.

He didn't want me to call the nurse hotline, but....

I called Hospice at 5AM and they sent a nurse out. We devised a plan and had to use a Lorazepam to calm his frantic breathing caused by lack of sleep and his achiness due to his edema and frustration.

When you combine lack of sleep, dementia, edema, copd, confusion, medication side effects that cause lack of sleep and confusion ....
you get a mixed bag of problems that are interconnected.

This morning at 6:30 I had to wake hubby up so he could take his morning meds on time. The elevation of his legs while sleeping for 10 hours greatly reduced the swelling. He is calm, he is breathing better, and is in a much better place.

~~~~~~~~~~~~~~~~~~

I'm writing this to anyone who will go through Hospice Care with their loved one. Some days you want to pull out your hair and scream from rooftops. Other days, things go quite normally.

But just like our regular everyday lives. We need to be prepared for all the twists and turns, up and downs, of life. 

Good days and bad days happen. 

The sun still comes up in the mornings.

Moral Injury or Tortured Soul?

Our visit with the Palliative Care Doctor was in my mind a huge success. Dr. Eskola and the Social Worker, Sarah were very receptive and understanding.

In the past 10 years there is a new thought process...well not new to any Combat Veteran [they know this, yet DO not know this] a newer exploration of PTSD combined with what is called Moral Injury. You can read about it here at Moral Injury-the VA's extensive write up.

The DAV also has an explanation part of what I will copy and paste below.

Symptoms:

Persistent Negative Emotions – Veterans who experience moral injury can be overwhelmed by negative feelings. Feelings of guilt, shame, remorse from past acts that violated their code of morals. Often times they feel disinterest in previously enjoyable activities, or genuinely find it hard to feel happy. A veteran may feel like they can’t trust anyone, because they have seen how dangerous the world is or feel emotionally numb.

Reliving the event – Awake or asleep, a trigger can cause painful memories to surface and make the sufferer feel as though they are experiencing the event demoralizing event all over again.

Avoidance – Veterans will often avoid situations that remind them of the event. For example, many veterans avoid crowded places, because they learned overseas that crowds were targets and being in a crowd made you a target. Some veterans will even avoid talking about the incident that affects them.

Trust Issues – Veterans feel like they have lost the ability to trust others and question whether every decision is right. Often veterans will withdraw themselves from society as if they feel like they do not fit in with society’s fabric.

Drug/Alcohol Abuse – Some veterans may turn to drugs and alcohol when faced with moral issues and dilemmas that linger in their past. They see the drugs and alcohol as a way out from facing the moral guilt built from war or past trauma.

Aside from the health issues my husband has had, he has Chronic life long PTSD. I've written about his severe depression before so I won't go over that again. 

The Social Worker asked if Rich understood what Moral Injury was and he looked confused. She explained it to him and he still looked a bit confused.

I asked if I could help explain it. Sarah game me the nod.

I reached over and asked Rich where it hurt. 

Everywhere, I hurt all of the time. It hurts to think, to breath, to exist. [Not an exact quote because he has aphasia and word finding difficulties]

I touch his chest, his arm, the side of his head and ask him if it hurts so bad internally that it is unbearable.

Yes, it is unbearable inside my head inside my ... his hand flutters to motion to his chest and body.

Me: What if that pain is because it hurts all of the time because of what you did while you were in Vietnam? You once told me that what you were made to do when against everything you were taught about being a good person? Does that sound like the pain you are having?

He nods and tears begin to flow. He gasps and sighs and drops his head. He mumbles that he is not worthy.

Sarah nods at me and we continue. 

She asks if he will see a Chaplain, if he is open to trying something different to ease his emotional and physical pain.

He is not sure. However, I ask him what does he have to lose? Why not?

He asks Dr. Eskola if he can't just get pain meds to make it go away?

She comforts him by saying her team will address all of his physical and medical issues as well as help him all they can with his mental health issues. She has seen his extremely long medical record regarding the past struggles all the way back to his first VA visit.

By now he is an emotional train wreck. My heart aches and I feel the pain coming off from him in waves. Seriously...I do. This guy and I have been 'soulmates' for 26 years. 

Our time is up and we make a second appointment to come back. We get in the car and he says he feels tired. I ask him to try this thing, to try and ease some of his guilt. 

He has a hard time wrapping his mind around it.

It sounds like Hocus Pocus and he has lived with this pain so long that it is a part of who he is. 

He owns his guilt. If he were to let go of it, would it make what he did okay? Would that make him a different person?

What we know is that we cannot cure his medical illnesses. That is why we turned to Palliative Care. It is for those with diseases that cannot be cured. However, if one can be more comfortable as they head towards the end of their life, why can't they also set things right with the world?

I ask Why Not?

Why not calm the tortured soul within to be able to find a bit of peace?

Rich received his D.N.R. bracelet. The permanent one will come soon in the mail. This bracelet is an advanced directive signed by his doctor that will notify EMT/Paramedics and ER doctors and hospital staff that he has a standing Do Not Resuscitate order. If the heart stops, let it stop.

And we prepare again...

I want permission from someone to write an open letter to my husband's daughter. But family is messy. So how do I handle that balance? I don't know.

What it is like living with MDD, COPD, PTSD, and the after effects of a major stroke, cancer, PE, and other health issues. 

Here is where I insert a comment that Caregivers are worth their weight in gold. All Caregiver support people insist that a Caregiver get time off or help. 

Really, let's not laugh too loudly. 

No. 

Family acts as if they ignore the issues, they will simply go away. Hiring someone is perhaps an option if you do not live in a rural area that doesn't even have enough help to keep open one of the local nursing homes.

My husband was perfectly happy being more or less isolated before the Pandemic hit. Even after his vaccinations, he remains cautious and prefers staying home to going anywhere. 

We eat out in the car while traveling to and from appointments at the VA. For nearly a year, all appointments were cancelled. Now we are going to prepare to enter another phase of care which is called Palliative Care.

He tried that once before when he had cancer and didn't really stick with it. 

Palliative Care uses comfort care with a focus on relieving suffering and controlling symptoms so that you can carry out day-to-day activities and continue to do what is most important to you. Palliative care aims to improve your quality of life – in your mind, body and spirit.

Palliative Care is provided by an interdisciplinary team consisting of a medical provider, social worker, nurse, chaplain, mental health provider and perhaps others. The team’s focus is on identifying, respecting and providing help in achieving the Veteran’s goals of care, with support and care to address: physical symptoms, family coping, emotional or spiritual distress, and access to needed resources.

However, we will make it work this time as he needs comfort care for both his health issues and mental anguish. If anyone ever tells you that depression is just something you can bounce out of, tell them to go to hell.

Depression can become so painful and so deep that it causes every pore and every fiber of your body to hurt.

Combine this painful depression with major health issues, and you have a messy cauldron of mental and physical pain.

I'm trying to spend the weekend figuring out and having a heart to heart discussion with Rich to  prepare him for meeting with the Palliative Care Team.

His main goal is pain meds which his regular doctor seems to be against. He other huge concern is NOT going to a hospital. 

Last year he was dropped into the local hospital when he had a mild urine infection and they gave him the full Covid treatment. The strong steroids caused hallucinations and the mix up in his meds caused extreme pain and confusion.

I'll never forget getting the call from him and he was frantic and crying. I had his daughter call him and later she told me that her father was a 'Drama Queen.'

Years ago, I sort of agreed with her. He did make mountains out of mole hills it seemed. 

However, I live with him day to day. I see what upsets him and what doesn't. Lies, white lies, and  deception to him are unforgivable. 

Why? In Vietnam,  he was lied to and deceived. Surviving meant learning to trust those around you. If you could not trust your comrades, it meant death.

That is probably an oversimplification, but in layperson terms, that may be the only way it can be expressed. 

I am known for being honest and straightforward with no bullcrap. 

When we talk about things, his health, our relationships, and life. I am honest.  Yes, I do try and ease things for him. But I am honest and have been since the day we met.

How many times have I seen EMT's take him away from our home? How many times have I watched him nearly die and come back? Too many. 

How many times has a medical professional sat me down in a quiet room to tell me the worst news. Too many times.

How many times have I driven him to the VA to be admitted to the mental health ward? So many times. 

What have I learned with this relationship of ours? We have a very deep love for each other. Truly we have tested 'To Honor and Cherish' from this day forward.

As far as being a Drama Queen? Perhaps if someone were to understand what exactly it is like to live in such incredible mental anguish along with incurable life ending diseases...well,

perhaps, they would have a different viewpoint.

And so we prepare for the next chapter.

I hope to have some updates after next week.

MDD

Major Depressive Disorder sometimes doesn't respond well to medications.

My husband has battled ... or lived with depression for many years. Treatments come and go in the form of "Let's try this medication or try this medication". Sometimes the meds fail miserably.

Rich is a very unusual person in that most prescribed meds seem to have severe side effects in some way. His medications for depression seem to take the edge of for a few years and then stop working.

During his treatments for Throat Cancer he had an anaphylactic reaction to a 'safe' chemo medication.

The cycle came around again. The last time we saw Lindsey [Rich's psychologist] I told her exactly what would happen. I also met his psychiatrist in the hallway and cornered him with Rich's previous psychiatrist.
I warned the doctors of what was going to happen and what had happened over the years.

"Rich is a train wreck speeding towards a crash and burn again. And you guys need to know this, it gets worse and worse ... he speeds like a locomotive out of control and then hits the end of the tracks..." I took my hands and threw them in the air, "..and boom. I am sitting in the ER with him and I keep coming back until he is admitted for an in hospital evaluation." I pointed at the doctors and then said, "You know it. You do. Look at the records for the past 20 years. Let us prevent that train wreck."

Oh they nodded and agreed. And as before, they suggested a change in medications.
I'd made my point that day but knew I'd be making that drive to the ER soon enough, but hoped that I wouldn't have to.

Over the past week Rich's depression worsened. He did get up a few times and interacted with our company but retreated to the bed. I noticed that he didn't want to take his medications, he didn't want to drink fluids, he just wanted to be in bed and then complained that all he could do was lay down and stare at the ceiling fan.
By Monday morning he had withdrawn completely.

I called and talked to the triage nurse and I knew that we'd be heading to Madison.

He was admitted for MDD that was severe.
Different treatments were discussed and reviewed by the Mental Health team.

It seems that he will be a candidate for Ketamine Infusion.
I'd never heard of it before.

...And forever, I will support him and help in whatever way I can...

You're broken down and tired
Of living life on a merry go round
And you can't find the fighter

When the silence isn't quiet
And it feels like it's getting hard to breathe
And I know you feel like dying
But I promise we'll take the world to its feet
And move mountains
We'll take it to its feet
And move mountains

And I'll rise up
I'll rise like the day
I'll rise up
I'll rise unafraid
I'll rise up
And I'll do it a thousand times again
And I'll rise up
High like the waves
I'll rise up
In spite of the ache
I'll rise up
And I'll do it a thousands times again
For you
For you
For you
For you

[Andra Day: Rise Up]

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.

Severe cold and Depression Suck

It used to be that you didn't dare use the word 'suck' in your writing as it would offend someone, somewhere. However our world has changed a bit now hasn't it?

I contacted ADRC which I said I would but only because things sort of came to a screeching 'whatchyamacallit' this week.

The cold weather has taken its toll on Rich. He has such a hard time with subzero temperatures. I've let him do what he could so far this winter. However since I knew things were going to get very cold, I moved the second batch of cattle into a larger area and we put out a bale feeder. Now they can all feed at their comfort and drink from one large heated stock tank.
Clap clap clap, hurray for me!
There are still 3 places to carry water to and if I do it with small buckets and make more than one trip, I can get it done by myself.

We got the house all spiffed up for the 'kids' to arrive. Arranged for mom in law to come over. We planned how we'd pull up right next to the one little step and lay out a non slip rug...we even discussed having 'spotters' for her.
I bought a cover for the couch instead of the old ugly looking thing I've used forever. It actually looks nice and Morris loves it.

Rich was having such a hard time with being outside I got up early and took care of all of the chores. I gave the hounds new bedding and heaped up the wonderful smelling pine shavings. They were grateful as could be.
I pried the fodder bales with a pitch fork and the cattle seemed to smile at me.

Then the phone call. The 'kids' couldn't come. When Rich hung up the phone it seemed as though his face had *transmorgified* yeah...not a word, but there you are. The light died out of his eyes and he announced that he was going to bed.

Later that day we talked.
Him: Why can't I do anything?

Me: What can't you do?

Him: I can't do chores, I can't breath, and... maybe...
I waited.

Him: Maybe I'm depressed. Why am I like this?

Me: [I clutched my hands together below the kitchen table] Well, throat cancer took its toll, the stroke has not been an easy thing to over come. You look good, you look fine, but...with what you have been through in the past two years? It has beaten the crap out of you.

Him: You are saying I'm [he stops, looking for a word as he often does...] having get to older.

Me: Well, I am getting older also. [I understand so much of what he wants to say, however it is often the same conversation each day now.]

Him: You aren't like that. You are going to getter.

Me ~ I stand up and hug him. His speech gets very garbled which indicates his frustrations and sadness. This is how he is now.
When he gets upset or down, he loses words and thoughts.

Me: I do love you.
Him: I'm going to nap.

Well I sit down and compose an email to our local ADRC [Aging Disabilities Resource Center]. I ask for help, I ask for some tools to deal with my husband.

I want to hug him, I want to yell at him. I want to hold him and I want to throw things.
I need to stay healthy and sane to help him.

I write a note to self. Call his doctor at the VA. Is it a bigger COPD issue? Mental health issue? Physical issue? How can I make his days more meaningful? How can I help him day to day and not lose my temper.

Perhaps Tricia can help. We will be meeting on the 3rd at 1PM.
I know I won't find the answers to everything, however I will be able to go in some sort of direction.

Wow Tai Chi!

When Dr. Faris, a psychologist recommended we try Tai Chi, I sort of did an internal mental eye roll.

I was sure it would be a dud of an experience.

I was certainly wrong.

We met with the instructor and she explained the basics of Tia Chi to us. We started with the basics [Horse Stance] and learned how to calmly and easily let tension drain out of us.  

So much of what was taught to us regarding breathing, posture, letting the tension flow out of us and gaining a feeling of physical well being ...was so similar to what we did when we ride equine. After a ride I have always felt calm and peaceful.

For me it was so like being in the saddle and mentally taking charge of everything going on around me yet concentrating on making sure that my mount was also relaxed by feeling ME relaxed.

Except that this Tai Chi was not really related to horseback riding, but is an ancient Chinese Martial Art form.  You certainly wouldn't think looking at anyone who is practicing it.

There is no downside to practicing Tai Chi, it can only really have health benefits.

I can't explain everything we did, but I can say that at the end of the session we did what is called 'Body Scan'.

At the end of the 'Body Scan' the therapist looked across at Rich and asked him how he felt.

Rich blinked and sat relaxed in the chair.  He answered softly with some amazement in his voice.
"I don't think I've ever felt this calm, since coming back from Southeast Asia."
He sighed. "I never thought I could achieve this sort of inner peace until I died."

Peace and calm, inner peace and calm.

This did not come from a pill, not from talk therapy, not from anything outside. It came from Rich himself.

Did I feel it?  Yes I did.  

Just call me amazed.
I take back my inner eye roll and fully embrace more Tai Chi for the two of us.

December 17th is our 6 month follow up and CT scan.

Palliative Care Visit Two

From my written journal ... Palliative Care Visit November 24th.

 I think I need a break some days from being a Caretaker.  We met with one of the Fellows — meaning a Doctor who is going to specialize in Palliative Care after he is done with learning and applying his knowledge in a setting like the VA Hospital.

Doc Fellow wanted to know what was on Rich’s mind today.  Well let’s say this,  this Fellow didn’t really know Rich and so asking him that question would lead to a conversation that had nothing to do with Palliative Care.

Rich needs someone to direct and focus him.  So Rich talked about the pain from where his PEG had been.  The Fellow jumped on that and I interjected that perhaps it hurt more in the past two days because someone had been hunting, shot a doe, and had cleaned it in the woods before getting his wife to come assist him.  Dr. Fellow then immediately dismissed the pain as a pulled muscle.  Probably dismissing is not a good idea with Rich.

After Dr. Faris [thank goodness] showed up, … Dr. Faris is Rich’s psychologist and has worked with us for about 6 months…he was able to help direct Rich a bit more.

It came back to the happiness issue.  Rich said he has never been truly happy since he came back from Southeast Asia.  Ever.  There is no joy in his life.  

At this point I become skeptical.  He has never ever had joy?  What about the times he and are are kidding around?  What about the things he plans to do with his grandkids?  What about the joy he feels when he is able to visit with his daughter or the joy that Lily brought him this summer?  This was not happiness?  Laughter, the twinkle in the eye, the hugs given to friends and the laughter…is not joy or happiness?

At this point I become skeptical and see Rich as a Drama Queen.  In front of the doctors he is all gloom and doom.  In social situations?  He laughs, he kids, he smiles and when we are alone he is not the same man sitting in that room.  So I am confused.

Dr. Faris inquired about our incredible relationship together.  Rich huffed a small almost sarcastic laugh.  “I can’t make love to her, she has had medical issues and an infection…and then I don’t think she is into it, not like I want to be into it… So know I just don’t feel anything.”  He made another noise that relayed his frustration? disgust?

All I know is I glanced at the two doctors and saw them both quickly look at the floor.  Dr. Faris’s face turned red.  I know the question he was asking in regards to our relationship was not about sex, but about the caring and deep love we had for each other.  Dr. Fellow, well, by his expression, this conversation was going in a direction he had no idea how to control.

Rich went on to repeat his horror stories from Vietnam.  I sat back, already feeling like a heel and listened to the same thing I’ve heard so many times over and over.  What was coming from him were flags for mental health issues and not Palliative Care issues.  He was unhappy, he felt tired, he felt like he couldn’t do anything, his cancer had ruined his life.

I wanted to stop him.  When he said those things about me, I felt the slow burn and considered leaving the room.  But I wanted to see what progress we could make with Palliative Care.

Dr. Fellow soon jumped up and excused himself.  He was gone for about 20 minutes and actually some of the tension left the room.  Dr. Faris was able to converse and steer the conversation back to what Rich was hoping PC could do for him to make things easier.

I suggested that it seemed to me that at the moment his mental health and this time of the year were overwhelming Rich’s life and that we should try the Physical Therapy and Tia Chi and then return to Palliative Care to see if these things worked for helping Rich’s balance and strength issues.

I also felt that there needed to be a bit more intervention at this point … right now… with Mental Health.

Dr. Faris agreed.

Dr. fellow came back in and we tried to get back on track.  Dr. Fellow explained that Palliative Care was not a fast moving process.  One of the big issues he wanted to bring up today was a discussion of the future.

What would Rich do if the cancer came back?  Had he thought of end of life care? What was his thoughts on dying? Living?

We'd addressed those issues already we told Dr. Fellow.  We had an Estate plan drawn up as well as end of life plans, also known as Living Wills.

I wonder where this direction is going.  Rich's really recovered quite well from all medical stand points, yet he insists that he isn't.

I wonder if I were in his shoes, how would I feel?  

I guess I would certainly feel lucky to be still alive.  And that doesn't seem to satisfy him at all.

Conversations

From October 13th's 'Journal'

Conversations with Rich can sometimes be pretty difficult.  He is not always open to saying what he is really thinking.
He can be a very difficult person to read.


Dr. Faris asked how he was doing.  Of course Rich answered "ain't worth a shit."  This is his usual tag line and has been since pre cancer diagnosis.

Dr. Faris replied, "Help me understand, that fellow which is you...I hear up the hallway..." he gestures to the hall outside his office on the Mental Health floor of the VA, "always sounds robust and happy.  I can hear your laughter when you stop and talk to Chris in his office."

I sit back and wait quietly for Rich to answer this.  I've noticed the same.  While he is 'visiting' with VA employees, or for example other folks, he gets caught up in the conversation and so many people have commented 'what a great fun person he must be!'  

Rich is quiet for a split second.  "I'm pretending," he replies. "I'm not happy, I'm just acting."

My brow furrows and I try to watch Rich and Dr. Faris at the same time.  Pretending? 
I can't stop myself.
I blurt out.

"I believe then that you need to receive the Academy Award for Best Actor in Any Situation. You didn't have a good time at Jersey Valley?" 

I am referring to meeting with another couple the weekend before and how my husband and my new friend's husband had so much in common as did the 'girls'.  
Of course the ice breaker had been her beautiful red Mustang that both of our husbands- who had gone through incredibly nasty treatments for cancer- admired.

Rich shrugs.  I am floored.  On our way home we'd talked about how much we enjoyed our visit with Sue and Nick and their dog.  I look over at Dr. Faris who is watching carefully.

"So...," Dr. Faris says. "Richard, you never enjoy engaging with other people? Is that what you are saying? You are then the best actor in the world?"

A big sigh comes from Rich. "Yes.  I'm just acting out trying to be normal."

"What gives you satisfaction or peace?  Something like fishing?" Dr. Faris watches.

"No. Not even then, but I love fishing." Rich looks straight at Dr. Faris.  "My only peace will be found when I am dead."

I want to stand up and walk out.  I am shocked by his statement and I want to ask.  "Wow, don't I mean anything to you, doesn't your family mean a thing to you?"  I'm pretty sure that isn't exactly what he meant. He goes on and on about the grand kids, his daughter, my older son and my youngest son's children.  I know he is not pretending when family is around.  I know this deep within my heart and soul.

I wonder if my bewilderment and anger show.  I then remind myself that I am dealing with a man who has just gone through a very tough cancer treatment and suffers from PTSD.

I am left wondering if he truly believes that statement or if that is just what he feels today.


~~~~~~~~~~~~~

Today we visit with the Palliative Care doctor, it should be very interesting.

Nervous as ... well nervous CT Brain Scan

To say that the both of us are not on edge with waiting for the Brain CT Scan/with contrast is a misnomer.
Both of us are anxious.

Rich and I are both a bit short tempered and on edge. Both of us are tired and feel as though we are being dragged along again with something horrid hanging over our heads.

Of course he says he isn't.  But I know better.

Yesterday we went fishing for a little while.  While Rich fished, I walked around taking some photographs and then sat down on the steep bank, content just to watch Rich and talk with him.

The conversation was about anything and everything except the upcoming scan.

Yesterday I finally got all the 'ducks in a row' I think for the scan itself.
Get the required blood test at the VA, visit our VA appointment, then pick up the results to hand carry to the UW for the lab tech that is doing the CT.

Since the CT is being done so late in the day, apparently they will call with the results?

I don't know.  I would like the chance to look the doctor in the eyes while he discusses the scan results.

So another day of unknown will occur today.  

Hurry up and get 'tested'!!! Oh wait.  We'll get you the results...soon.

But I have to think positive as the scan results for throat cancer was clear.

Oh and the fish were not biting.  But I guess fishing is good even when the fish are not co-operative.  It gets you out into the fresh air and your mind is on something else.

The Day After the Pet Scan Uh-ohhh

Dr. Witek called Rich the day after the PET scan.

"Our techs were going through your PET scan again and I need to know Rich if you've been having trouble with your eyesight?"

Rich said yes, but we of course hadn't linked any vision changes with anything other than the possibility of normal aging eyes.  The eye doctor had found cataracts too.  We'd told Dr. Morris about that the day earlier and he said that radiation could increase the time frame for cataracts if a person were to get them.

Apparently 'they' found 'something' in the occipital lobe of his brain.  The something was something they wanted to identify very soon.  Dr. Witek had put in an order for a CT scan of the area.  The 'techs' had wanted an MRI but Dr. Witek opted for the CT scan as Rich is very claustrophobic.

There was a knee jerk reaction in our household.  Our good news had turned into a 'Something'.  An unknown.  

We had to go to the VA for Dental, Swallow Clinic, and Mental Health yesterday.  Rich's Dentist did prep work for putting in some teeth to replace those he lost before the radiation therapy started.  Since the Dentist can't place a post in the jaw for partials, he had to make a work around. Radiation in throat and head makes the jaw bone brittle and no teeth can be pulled for about two years without causing huge issues.

Our appointment with Dr. Faris was perhaps the best appointment of the day.  Dr. Faris deserves a nod and some applause as he probably went way past his quitting time to hear Rich out.

He let Rich talk on and on about the Old Days and how he could do anything and everything.  His main complaint is of course how terrible things are for him because he has no energy.  After a long while Rich said out loud, "Maybe I am just getting old and I can't do the things I used to."

There it was, out in the open at least in my mind.  He is not 19 anymore nor 10 foot tall and bullet proof.  He admitted it.
I think it can be very difficult to face the fact that your life is not as it once was.


Dr. Feris discussed Palliative Care for Rich and he actually considered it. Palliative Care is not Hospice but is defined as special medical for people with serious illnesses.  It involves working with a special medical team that focuses on providing the patients with some relief from symptoms and stress from serious illness. The goal is to improve the quality of life for both the patient and the family of the patient.

I asked Rich on the ride home why he was always very negative when people asked how he was.  He didn't really have much of an answer.  I'm of the belief that if you always say you are not well, you will be unwell.

As for the Uh-Ohhh?  It is there and for the moment I am going to cope with it in the only manner I can.  Hope for the best, prepare for the worst, and don't freak out.  No knowledge is more fearful than having knowledge.

I know it is weighing heavily on Rich's mind.  But he told Dr. Feris yesterday that he didn't care, he was not afraid of it after all he has gone through.
We can all put on brave fronts in front of other people can we not?

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.