Weekends in hospital

The weekends in a hospital are not exactly full of useful info. I mean a doctor looks in and does their thing.  

What I wish for is a heart to heart conversation, but Dr. P and I sort of had that on Friday. The Living Will and DNR papers are active for now. If he were to go home and come back, I'd have to make sure they know those papers need to be activated as every time a patient comes in, they are considered a Code patient. Meaning, they will save the life if at all possible.

This is pretty good information to know.

Her opinion was 'wait and see'. 

He did have a minor improvement in being able to breathe. Not enough to come off the High Flow Therapy. It is specialized equipment meant for those who have orders not to be put on a ventilator or a DNR order. However, according to studies, dramatic improvement happens in 24 hrs.

That drama has not happened. 

Rich and I discussed trying to find out Monday if he can somehow be put on Hospice at home to pass away. He doesn't want to fight and he doesn't want to stay in a hospital.

Saturday was pretty quiet at the hospital, I sat and read and spoke to the nurses who were all kind and very positive. Apparently Rich is a favorite patient as the nurses quibble over who gets assigned to him for the day. Steroids, antibiotics, and lots of nebulizer treatments all day, all night are what he has going on. 

Rich and I were able to have time to talk about things and his wish is to be able to get off the specialized equipment and to come home with Hospice involved. That would mean visits by a nurse at home and no re-admission with his next exacerbation of his COPD.

The goal for the weekend was to transfer him to a recliner and see if he could tolerate a reduction in the high flow therapy.

Sunday was interesting. Rich's ol' fishing buddy came to see him. While the two visited [Steve said Rich just slept part of the time], I met up with my Legend Girls for coffee for an hour. We chatted and told funny stories and talked about places we'd dreamt about visiting.

I spoke with his Resp. Therapist in the hallway and asked her if she thought he'd be able to come home with Hospice. I told her that we'd discussed it. She said that was an excellent program for him and his wishes. 

When I came back from coffee time, Rich's daughter, her hubby, Ariel, and Steve were all in the room. 

Since Steve was ready to leave, I took the advantage of that. Ariel and I went home to take Charlie for a nice long walk on our gravel road so he could do his doggy stuff. 

On the way back in...I  stopped to see the nurses. The daughter, her hubby and a surprise visit from our friends in Missouri had all visited but had gone out to lunch.

The nurses said Rich was exhausted. They put a Quiet Time sign on his door and I texted all visitors that Rich was not going to see anyone from lunch until at least 3 or 4pm, they had to see me first in the family waiting room.

So the end result of Sunday was that a lot of folks came by. He did get in the recliner. They did reduce the airflow on his High Flow pillow cannula and he did seem to have a slight improvement in breathing. 

He actually ate 3 bites of an omelet at breakfast, drank water, had a milkshake for lunch, and had half a little burger and a milkshake for his supper.

Monday. Today, I hope to get some sort of directions from a doctor as to whether our plan and goals are even doable. I will be calling the VA Social 'Miracle' Worker to see what our options are through the Veteran's Administration.

The Missouri folks will stop in shortly to see Rich this morning and then they will head home.

Tuesday afternoon we have a Winter Storm Watch with blizzard conditions possible, high winds, and either rain and snow for us or 6" of wet heavy stuff.
If I am forced to be home through the storm, I will catch up on rest, and get the laundry folded.

I have to include this in my update for this morning. People and neighbors are incredible. 

There were visits to Charlie, there was prepared food put in my frig, and groceries left on my counter. This all done just because.

A day in his life, what Quality?

My once very vibrant, contentious, fun, frustrating, funny, and bull headed husband is slowly fading away from me.

This year though, his mood is better. It all has to do with the constant photos we receive from my oldest son of our newest little grand daughter. Some mornings, Rich taps my phone to watch 20 second videos of Rory just doing normal baby things. He loves to hear her voice and her cooing as well as her antics.

He had another TIA which concerned the doctors who wanted to order a battery of tests and a slew of medications.

We reminded them that he is in Palliative Care. He wants no new tests. He wants only to be left alone by the medical people and as remain comfortable as he can be.

He commented that he'd be happy enough if he just died in his sleep.

The attending ED doctor looked at him and then me and said, "But maybe you don't really mean that. I mean, think of your wife. This may be painful for her to hear."

I pipped up and replied, "He has no quality of life doc, this is something we have discussed and thought about. No one is prepared for their life to end. But then again, he doesn't have to fight through all of his illnesses and put on a brave face for me. I am with him 24 hrs a day and see his continuous struggles. You don't. Believe me, it is okay and not painful."

A nurse came in and commented that he had gained weight and perhaps he should look into losing some weight and eating healthier... and maybe doing some exercise???

I walked out with the nurse and asked if she'd looked at his chart. I gave her the stink eye and said her comment was appreciated, but totally uncalled for. I'm sure she meant well on her 'high' horse. But I kindly took her off that and dumped her on the ground as easily as possible. Her comments, I told her would resonate better with a patient who was young and in good health, but perhaps not someone in end stage COPD.

As good as doctors, nurses, and all medical staff are, some have never lived around the clock with a person who has lost their previous lives. 

In fact not many people really REALLY know what a spouse/sister/Aunt/daughter/son Caregiver really go through at all.

It is something so many do silently and without much complaint. 

~~~~~~

My husband's day starts when he gets up at whatever time. It can be 5 am or 9 am, there is no rhyme or reason.

He has 2.5 cups of coffee...exactly. He can make his own instant oatmeal some days, some days not. I have to carry his coffee for him or he spills it because his hands shake so badly. His coffee sits on an old hand towel to catch what he spills as he sips it.
Sometimes I have to feed him. Again, the shakes. And oh the embarrassment and self loathing that follows that!

I fill bird feeders, hummingbird feeders and arrange them each morning so he can watch out the window and try to tell me which birds he sees. He has aphasia so the bird names often come out oddly, but I know what he is trying to say. He's had word finding difficulty since 2017. I'm used to it.

He can be delightful and funny still. He also gets quiet and it seems that I lose him to another world where he is shut in his mind. 

In two hours after breakfast on the dot, he is ready for the morning nap. That lasts until noon. He gives me his order for lunch. I make it. We eat together and chat about whatever. I put Lego minifigs on the table and play with them. He laughs.

At 1pm sharp, it is time for a nap unless it is dry enough for me to bring him the riding mower. If he can mow, he is happy. I help him onto the mower and situate his oxygen. He takes off wearing his cowboy hat and shades. 

I think it makes him feel free and worthy to do the big yard. He is mobile and he is good at it. Sometimes he bumps into things. 

When he comes up to the porch on the mower, his smile is huge. I help him off and it is time for a drink of water and a ... nap.

On days he can't mow because of the weather, he sits at the table and watches the birds. When that bores him he lays down again.

His schedule revolves around routine. After the 1pm nap which is short, he watches mysteries on the TV....until it is nap time again.

By then we are close to supper time and he asks me what we are having for supper. [He can never recall what I tell him about supper or other things] 

*I forgot* is his new mantra. And it is true. He talked and listened at length about things his daughter was telling him on the phone on Father's Day. His end of the conversation was ... "Oh" "Yes" "Hmmm"

When I asked about what they discussed over our supper, he looked up and shrugged. 

"I can't remember."

Long conversations on the phone are good. He likes to listen. But he cannot recall what the topics were. He can rarely recall what I planned for a meal after I've told him. Some days he can't navigate the TV. 

He has developed a rather alarming cough which is part of his COPD. He has more and more trouble breathing and his intercostal muscles surrounding his ribs hurt from coughing. If he goes without O2, when waking up and changing from his CPAP to his concentrator, his O2 levels drop below 80%.

I feel guilty, because some days I wish that his suffering would end. He once said that if he was an old hound dog, his owners would never let him suffer this way.

He wonders often why humans have to suffer when pets didn't.

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.

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.

Revisit Angry Depression

My husband now has a list of medical conditions that could make any physician scratch their heads. His PCP last week had to deal with his newer condition of Depressive Anger.

The least little thing will set him off now.

It was a pretty bizarre evening last night. I had made a cake and a pretty decent supper. I know eating supper together has always been pleasant for us. Well not last night.

MDD, Major Depression Disorder has come back something fierce. At first I thought it was acceptable because of his issues with the Pulmonary Emboli in both lungs and the hospital stay and the pain in the knee from the bursitis that was excruciatingly painful..
However he said he 'hurt all over' everything hurt. [I've learned over the years that MDD causes the body to hurt all over...it is a sign that he is going into a very bad place.]

He had a major fight with his daughter and yelled at his mother on the phone last week.

Instead of leveling off, the internal and external anger has become more pronounced.

Living with MDD is interesting. You need to have thick skin and emotional walls of concrete.
I set him off in a rage yesterday after working outside for hours, I came in to check on him and to make him something to eat.
I walked into the bedroom to see if he was okay and would like something to eat.

He blew up.
How dare did I interrupt his nap?
Why couldn't he get any sleep around here without someone bothering him?
He got up and tossed the covers aside.
I'm tired and I wanted to sleep so I could shower! And you won't let me!
I replied that I'd been outside for hours and ....how was I to know? I knew the nap for a shower wasn't really a reason for sleeping. Showering had become another new issue for us. Before I could assist him with showers while he was recovering. The last time he did a major portion of it by himself.

The fact that he did not care if he was dirty or smelly and would fight my suggestions for getting washed up was a huge indicator of his depression.

YOU just won't stop bothering me!
He came up and began to poke me with his fingers and imitated as best as he could my voice:
How are you? Do you want something to eat? Can I get you something? Why don't you take a shower? Want to wash up? NAG nag nag!

He poked and poked.
I'm going to wake you up every 30 minutes tonight, see how you like it.

I stood still and silent. No arguing with Depression Rage or whatever you want to call it.
I silently wondered if I could get him in the car and take him to the VA Emergency Department. Sundays were generally bad days for that. And the thought of a 2 hr drive with Rage in the other seat was not anything I wanted to consider.

He went on to other small inconsequential things that I have done over the week. One of the items he was furious about was that I was selling one of my older cameras. He simply went on and on.
I remained silent as One, it was my camera. Two I rarely used it anymore, and Three how did it matter in the larger scheme of things?

Silent. You can't argue with The Transformed Man. Once that ball of anger gets rolling it keeps getting larger and larger.

Last night we went to bed.
He pulled the covers off me.
Then waited until I put them back on.
20 minutes later he started poking my shoulder and asking Are you Awake? How do you like that?

It was juvenile, I admit. But I knew he'd fall sound asleep soon.
I decided to move a bit later when he fell into deep sleep.

I don't understand why his PCP didn't ask for intervention when he argued with her earlier this week.

The scary part of this? I responded with nothing. His tirade never even phased me.
After his oxygen delivery today I will risk asking him to go to the VA ED.

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.

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?

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.

Skin Cancer around the Eye and CT scan ordered.

I found a message on my cell phone.  It was Dr. Rahim from Oncology.  He left me a detailed message that he had ordered a CT scan of Rich's abdomen "as a precaution" and because he is detailed.

In August we'd gone to the ER because of stomach pain that was intense.  The doctors at Boscobel thought it was a blockage and did a CT scan.  The doctor who had dx'd Rich's throat cancer the August previously was there and gave us the print out of the CT. He wanted me to give it to Rich's provider and his oncologist.

I asked him what it all meant.  The lesion on the adrenal gland? The remark by the doctor who read the CT?  What was the "nonspecific sclerotic density in the right iliac bone, that should be further evaluated by a nuclear medicine bone scan?" At the time I worried when he said that could indicate the beginnings of bone cancer.

See you live in fear of someone finding something...anything once a diagnosis of cancer has been reached.  

Rich's diagnosis of having nodules of skin cancer around his eyes in several spots was alarming to me.  But he did his male stoic thing and shrugged it off.  He did say however, that the locations caused the eye doctor to be concerned enough to schedule biopsy and surgery to take them off and while they were at it, they would nip his upper eye lids which sag and block almost 30% of his vision.

He has been feeling run down the past few days and I did try to explain to him that subzero weather was hard on those who have COPD and who have had radiation treatment.  

"Where did you read that?"

"Well honey, it was actually in the audio that I took with our first meeting with the oncologists."

Sad note.  We lost Mona yesterday, our eldest hunting hound.  Good note.  I still am waking up next to Rich each day and for that I am grateful.