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.

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.

Adventures with Cancer...

It seems each day in the treatment of Throat Cancer is a day of some kind adventure.

On our way home yesterday we took a few side trips to look at Rich's old 'fishing' haunts.  I played chauffeur and he gave me directions.

We stopped in about 4 places and I think he enjoyed it. We talked about maybe coming back soon with fishing poles and taking a turn at tossing worms into the Wisconsin River.

We discussed driving over on County H just outside of Lone Rock to see the old Mill too.  

The day was incredibly hot though and of course I played mother hen and cautioned him about the heat and the sun.

His neck has been burning up from these last radiation treatments.  Two days ago I asked if this was normal and the techs replied it was.
Last night I looked at his neck as I gently cleaned it.

No, this was something that concerned me.
Then Mr. Stubborn decided not to take his pain medicine even though it hurt like heck...no it hurt worse than that. I could see his arms shaking.  He turned white as a ghost but told me to continue.

I asked him to take his Oxycodone.  He refused saying he didn't wasn't to 'get hooked' on it.
I explained that the pain would make him feel more ill.

Nope.

I used Aloe gel on the burns and decided on Thursday that I'd stand in the waiting room until I saw THE nurse. 
In the beginning I was told we'd have nurse co-ordinators to see us whenever we had a question or concern.

Rich went to sleep and assured me he'd be fine while I got Morris.

When I got home, Rich said he hurt worse than ever.  I asked where.

"All over."
I tried to get him to tell me, was it his throat, the radiated skin, or something else.
When he gets like that he remains staunch and won't tell you a thing.
"I just hurt."

He then told me he was cold.  I took his temperature and it was 99.  Low grade.

I tried to get him to eat or drink.
"NO."
I tried him to take some Oxy.
"NO."
I tried to get him to take his proper medications.
You guessed it.
Nope.

At 10pm I checked his temperature. 100.1, at 2am I checked his temperature 100.3.
My list from both the Infusion clinic and Radiation clinic specifically tell the patient they must be seen by a doctor with any temperature of 100.5 or more.

Morris laid down next to Rich on the floor and put his head in his paws.  He was worried and watched also.

After trying to get some sleep on the couch or the recliner, I finally gave up and went to the upstairs bedroom.

I normally get up at 6am.  I'd check his temp then.

~~~ Follow up in the next blog.

The not happy side of Care Giving.

I had an interesting talk with my stepdaugher...oh hell, let's just say she is my daughter.  For all the help and support I've gotten over the years she is as close to a biological child as I could get.

Sometimes I wonder how I'd get through things without her.  I know I can call her and blow steam off.

Last night we discussed how dramatically different Rich will be with her or the nurses and staff at the UW and at the VA.

He charms their pants off.  Smiles, agrees to what they tell him, jokes around and stops to talk at length with other veterans.  All in all what I see in public is a well rounded happy person who is dealing with cancer of the throat.

Suddenly the tables turn when we walk in the door.  He becomes angry, frustrated, and will lash out if I ask him if he is going to 'flush' his PEG tube.  He seems to get confused and can't recall what the doctors told him and WHY they told him these things.

I pull out the handy voice recorder and offer to play it back for him and he gets angry again.  
He tells me I'm a nag. He makes a 'face' at me and gives me the look.
Finally he just tells me to ...
just leave him alone.

I try to let things just roll off my back and try to remind myself that these are just words and that he is the one with the illness.

And then there it is, the little nag in the back of my brain that is mean.  I want to lash out and tell him off.  Let him have some of his own medicine.

Make your own bed, make your own meals, take care of chores, bills, if you know so dang much do it yourself.  If I can't do anything the right way then fine,...I quit.

But no, I don't do that.  

Somewhere there is an end and treatment will be done and there will be a road to recovery.
I always believe in hope even when it is difficult.

I hope.

13 days

Well, here it is, 13 days of going straight at it.

I think this is where I can look back and say I've got a bit of Care Giver Burnout.

It isn't pretty.
A Care Giver who doesn't take a break can be cranky, tired, overwhelmed, and sometimes even not so pleasant.

I'm trying to be pleasant, but I hear myself as a Nag.

"Did you take your medicines?"
"What did you eat?"
"How is your stomach?"

You get the idea.

I reminded him this morning that we had only 45 minutes before we had to leave. 
It was a nag, it was a push, it was...well, it was the truth.

I hate my job today.  I would just love to let him rest and do exactly what he wanted.
But course of treatment dictates otherwise.

He is tired, he is not feeling good, he is losing weight.  Getting the stomach on a happy medium is nearly impossible.
We swing from one extreme to the other.  
He resists the thought of taking Jevity which will keep him alive.  I do not remind him that if he continues to not take it and loses more weight that Nurse Ronnie will just have him admitted to the hospital.


Making up food that he can eat consumes most of my free time.  
I've joined a site called CancerCompass that has great information on all types of cancer.

There are tips on how to get through, what might be helpful to eat, what people's experiences were and lots of support.

There is even a section for Care Givers.

I wonder if a care giver experiences frustration also when a patient who feels miserable is not very cooperative.
13 days since we started.

We still have until mid June just for the daily treatments.  And then follow ups after that and dealing with the longer lasting Radiation side effects.

Onward.

I'm Counting the Days Now...

Maybe I shouldn't count days, maybe I shouldn't look forward to when I can have a day for myself.

Yesterday was another extremely long day.
It started well.  While I was doing chores, Rich started to feel nauseated and instead of taking his meds he waited until I came in.

Another side effect from Chemo hit him at the same time. Ewww...Diarrhea.
Not a pleasant subject but if we are talking about Cancer and everything associated with it, ... there it is.

I called the Infusion Hot Line and was told to give him his nausea meds and Imodium for the diarrhea.
I'd done the nausea meds and had argued with Mr. Patient about taking them.  After talking to the nurse it got...

Done.

We were nearly late for our appointment and but the bouts of diarrhea held off for 4 hrs.  He should have had another tablet after we got to the UW. Bad me, for not being able to keep everything straight and do all the driving and navigating from one place to another.

Mr. Patient and I got directed from the Infusion clinic to the ER at the VA.  Fluids and anti nausea IV meds were given and there was a kind 'lecture' about keeping up on fluids AND the feeding.

Blood counts dropped from yesterday so it will be interesting to see how it is come Tuesday.
Our day spent at the UW, the VA ER, and travelling was from 9am to 6pm.

After we got home Rich went directly to bed.  I was exhausted but went out to do chores anyway.  Heck they needed to be done.
The yard is getting too long and shaggy.

I fed the animals and tried to figure out how quickly I could move everyone to summer pasture.  It would cut down on my work by hours each day.  And as tired as I was getting, that would be a great thing.

Rich had his first IV tube feeding.  Actually it is just a gravity feeding to his PEG.  He had been a pretty poor patient about taking extra nutrition through Miss Peggy.

As nurse Ronnie had said, if he didn't start being a bit more proactive in his eating and nutrition, they would admit him to hospital.

Naughty me, I thought ... in the back of my mind.
Oh!  Really?  Please do!  I could use a couple of days to tend to all the things on the farm!

My Patient-husband can be a real grump and actually he has reason to.
He keeps telling anyone who will listen that he sure didn't bank on being knocked down by the Chemo like this.
Side effects from the Radiation Treatments will make their presence known soon.

The cancerous lymph node has gone from 3cm to 2cm.  At least that is what the doctors are saying.  This is good news to hang on to.


I checked the calendar and counted it up ~ after today:

25 more Radiation Treatments.
5 more Chemo Treatments.

Yesterday's lessons.  
Have pull up adult diapers on hand in case...
Make sure patient takes his anti nausea pills and stays with it.
Make sure patient eats.  Make sure patient takes Jevity.
Pack your car as if you were a pharmacy and add water bottles, clothes, and notepads.

For the CareGiver:
Go to bed.  Sleep. 
It is normal to be frustrated.

All the caregiver information I read is to get someone to come in and give you a break.
This isn't really possible when your day is taken up by travelling and farm chores.  
But I will be addressing those issues very quickly.

Today is Friday.  I hope it goes well.

We've Got Your Back!

We walked into the waiting room for Radiology.  Our trip to MAD City was quiet.  Rich slept, he was miserable but quiet.
After his treatment, we saw Dr. W, who felt the lymph node and commented that it was already receding.  This was great news!  I felt ecstatic.  My husband-patient however was miserable still.

Dr. W mentioned that by next week Rich's mouth was going to start feeling the effects of the Radiation Treatments.

We made it to the VA with time to spare.

Rich's labs were good, his white count was fine...
Then we entered the Infusion Lab and when Ronnie the nurse asked Rich if he wanted water and went to get it, I followed her.

I told her what had been going on.  I told her about 'nausea-not nausea argument' that we'd been having. 

The way he got impatient with the Jevity and pushed it into his stomach and then the horrid diarrhea that he was experiencing.
I also mentioned that I thought he was hitting a major block of depression.  "Well who wouldn't be, right?" I asked.
Ronnie told me that she'd address everything with him.

First thing she did was weigh him and then question him about what was going on.  She was like a drill sergeant with her questions.  

Finally she leaned back and said to him, "If you continue like this I will admit you to the hospital.  I can do it today, if you like."

Rich shook his head.

Then Ronnie carefully explained that the anti nausea meds that are given intravenously with the chemo treatment last for 72 hours and everything he was telling her was right on for the nausea catching up to him and his refusal of taking his nausea meds only made things horribly worse.

She told him in no uncertain terms that he needed to have one can of Jevity EVERY night this week.  Starting next week, two cans.
Any meals missed = one can of Jevity.
She arranged for us to receive 'Kangaroo' bags to put the Jevity in and hang from an IV pole.
Ronnie then explained that Jevity needed to drip in slowly to his stomach because if it was 'pushed' in, it would cause severe diarrhea.
Bingo.
Rich's impatience had contributed to his awful bout with that...

Ronnie suggested setting up the pole and bag, kicking back on the couch and watching a movie while his liquid 'gold' dripped into his stomach.

Ronnie went on to say that he needed to get out every day and take a small walk of some kind.  He needed to have fresh air and see the clouds and sun.

One word about Ronnie.  She is kind, sweet, and overflowing with compassion regarding her patients, she cares for them and it shows in her eyes.  She knows how to be a hardass when it is warranted.  And she knows how to deal with Veterans. 
She is priceless.

She told him that IF at any time he couldn't eat, or he couldn't control his nausea, that HE should call the Oncology number we had 24 hrs a day and a nurse would get back to him.
Not only that, we were next door at the UW Carbone Cancer Center 5 times a week...so...
IF he felt ill any day, come immediately to the Infusion Clinic and they'd make room for him.

What we had been going through could have been avoided.

Boy, did I feel like a dumb-ass.  I told Ronnie that.  She shrugged and told me that I was normal.  This cancer treatment thing had a learning curve.

Rich had been dehydrated and sorely needed the IV hydration that he was given first.  He really perked up with that and ate pudding and drank juices and ice water.

Ronnie was busy making phone calls around the VA and even got us in to see a Mental Health Counselor before we went home.

We made the trip home after an 8 hour day spent at two hospitals and clinics.  

One of the things I won't go into here is all of the different medications Rich is getting.  Each person is so different in what kind of cancer they may have and what will be given to them.
As we were told by the Nutritionist yesterday, there is such a delicate balance of trying to make the patient as comfortable as possible during treatment.  Medications would be changed and adjusted according to how the patient was doing.

It may also be important to bring along a voice recorder so both the cancer patient and the CareGiver can review what was said.  I have found that to be priceless.  I haven't run across a nurse or doctor yet who wouldn't let me use it.

We spent an hour with a counselor who helped address the Depression issues.  

Day 6 of radiation completed.  Day 2 of Chemo completed.
8 days into treatment.

Most of all, don't lose hope and know that if you are getting treatment, there are people who will have your back.  I imagine this is true for nearly any oncology clinic.
I think this was the most important thing I learned yesterday and it was such a relief.

The Difficult Patient.

Today Rich had a very hard time with his 'gag' reflex.  He wasn't able to put in his mouth pieces for the Radiation ... Tomo Therapy treatment.

They ushered him to the waiting room while a tech went to trim the mouth piece so he wouldn't gag.

He got through his session but literally splayed on the waiting room couch.

Soon enough, we went to another waiting room where our male nurse ushered us into a room.

He lectured Rich on using his anti-nausea meds to keep the nausea at bay. This was day two of someone telling him to take his meds.

He nodded as if he would follow directions.  The nurse also told him how important meals were.

Yep, he knew that.  But someone needed to make him feel better.  

The male nurse from the RAD department explained that more than likely he was feeling side effects from his chemo treatment.  The side effects from this week's radiation therapy would effect him next week.

I indicated that he had not been eating and of course Rich argued that HE had eaten.  And that he had 2 shakes last night and a bowl of cereal this morning.

I sighed.

Rich had slept most of the way in to MAD city and all of the way home. When we got in the door he mumbled that he was going directly to bed.

I insisted on his nausea medication and then his normal noon time meds.
He shrugged and headed upstairs.

I brought them to him and he took the meds.  I checked the fluid level in his CPAP, tucked him in, and proceeded to do the things on my "To Do List".  
This included getting him a wedge pillow, some Boitene rinse for his mouth and making phone calls.

Okay, this may sound a bit selfish, but I went to visit my dog at the Chiropractor's Office.  Damn, if Morris wasn't into his job. He was busy greeting patients and walking them to the door when they left.

He greeted me and then went back to 'work'.  He is in his glory and so is my good friend and wonderful Chiropractor Dr. Bjerke.

I was almost annoyed that my dog was Mr. Sociable and treated me as if I were one of the patients.
I'm smiling as I type this.  We should all be blessed with a wonderful dog like Morris.  I'm glad he is busy working and not stuck in his crate all day.

I worked at chores in the light rain and even began to set up things for moving animals this weekend or perhaps next weekend.

Tomorrow is Chemo Day.  Since my husband will be attached to an IV for 4.5 hrs I can talk to the nurses to see if they have any helpful hints as to 'how' to convince Rich that he needs to eat no matter how tired he is.

Eating and nutrition is the key to getting through Chemo and Radiation Therapy.

And this cancer has over a 90% cure rate.