“Ramblings of a Primary Caregiver” or what I call “My Life”

The Kübler-Ross model, commonly known as The Five Stages of Grief, includes denial, anger, bargaining, depression, and acceptance.  Apparently the stages can begin during the illness part of a disease and is not relegated to after someone has died.  Also, it applies to the primary caregiver and those around the person with the illness as well as the afflicted person themself.

I however, take issue with some of this and have questions.  What if someone skips a stage?  What if they get stuck in a stage?  What if they have stages that aren’t listed in the five?  What do you do to get out of a stage?  Below is a more detailed explanation of the Kübler-Ross model.

Denial — “I feel fine.”; “This can’t be happening, not to me.”  Denial is usually only a temporary defense for the individual. This feeling is generally replaced with heightened awareness of possessions and individuals that will be left behind after death. Denial can be conscious or unconscious refusal to accept facts, information, or the reality of the situation. Denial is a defense mechanism and some people can become locked in this stage.

Anger — “Why me? It’s not fair!”; “How can this happen to me?”; ‘”Who is to blame?”  Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy. Anger can manifest itself in different ways. People can be angry with themselves, or with others, and especially those who are close to them. It is important to remain detached and nonjudgmental when dealing with a person experiencing anger from grief.

Bargaining — “I’ll do anything for a few more years.”; “I will give my life savings if…”  The third stage involves the hope that the individual can somehow postpone or delay death. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Psychologically, the individual is saying, “I understand I will die, but if I could just do something to buy more time…” People facing less serious trauma can bargain or seek to negotiate a compromise. For example “Can we still be friends?..” when facing a break-up. Bargaining rarely provides a sustainable solution, especially if it’s a matter of life or death.

Depression — “I’m so sad, why bother with anything?”; “I’m going to die soon so what’s the point?”; “I miss my loved one, why go on?”  During the fourth stage, the dying person begins to understand the certainty of death. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and grieving. This process allows the dying person to disconnect from things of love and affection. It is not recommended to attempt to cheer up an individual who is in this stage. It is an important time for grieving that must be processed. Depression could be referred to as the dress rehearsal for the ‘aftermath’. It is a kind of acceptance with emotional attachment. It’s natural to feel sadness, regret, fear, and uncertainty when going through this stage. Feeling those emotions shows that the person has begun to accept the situation.

Acceptance — “It’s going to be okay.”; “I can’t fight it, I may as well prepare for it.”  In this last stage, individuals begin to come to terms with their mortality, or that of a loved one, or other tragic event. This stage varies according to the person’s situation. People dying can enter this stage a long time before the people they leave behind, who must pass through their own individual stages of dealing with the grief.
For me, the denial stage seemed to be really quick.  Like a nano-second.  When Joe was diagnosed, it hit both of us like a ton of bricks.  Crying and carrying on. After that very brief period, we forged ahead rather quickly.  I don’t think either of us after maybe one day was thinking, “This can’t be happening to me”, because it was so obvious that it was.  I’m not sure denial in our case, or more specifically my case, would even qualify as a stage.  After that I moved quickly to acceptance.  Not the way it is described above but rather a rational acceptance of Joe’s cancer and that we would fight it.  I knew and still know the ramifications of the cancer, and the inevitable result, so I did psychologically try to prepare for it.  But there in is where the problem lies.  How to prepare?  Yes, we can prepare financially and all that stuff, but what about emotionally.  No one can prepare for the death of a loved one.  Especially a spouse or child.  So even though I’ve “accepted” the inevitability, I’m not sure how to prepare for it.

Then there is the depression.  Or the “dress rehearsal for the ‘aftermath’”.  That’s a tricky one.  As I said before, how does one prepare?  My answer, you don’t.  I hit the depression stage rather quickly.  The end result of that was gaining about 25 lbs.  Yes I am a stress eater.  Also, 5 months after diagnosis, I went on chemical aids, prescribed by my doctor to assist with the anxiety and depression.  I also started what has become a source of irritation for Joe.  During the 5 month period before the meds, I was having extreme difficulty sleeping.  It’s those times at night when all would be quiet, Joe lying next to me in bed, me listening to him breath or snore depending on his sleeping position, that were the worst.  Those quiet times would be when my mind would race,  thinking of all the worse scenarios possible.  Would this be our last Thanksgiving, our last Christmas, last New Year’s, last everything.  Most nights I would average about 2-3 hours of sleep.  Lying in bed for a couple of hours before drifting off, having terrible dreams, waking up and being unable to go back to sleep.  Most times, slipping out of bed, going downstairs to the family room and turning on the TV for mindless background noise.  But that was where I found a key ingredient to being able to go to sleep.  If there was a movie on that I had seen before and was familiar with I could close my eyes, listen to the sound and since I was familiar with it, I did not need to really concentrate on what was going on.  The key, my familiarity with the movie.   Once I latched onto that idea, my sleeping regimen began.  I recorded 3 movies upstairs on our bedroom DVR and now nightly I have a long headphone cord that runs from the TV to my side of the bed where I put my ear-buds in and go to sleep.  Usually I only remember maybe 5 minutes of dialog before I am off to sleep.  It keeps my mind just busy enough not to wander to places it doesn’t need to go and typically keeps me from having those “dress rehearsal for the ‘aftermath’” dreams.  Also, the chemical aids prescribed by my doctor help.  Those I take in the morning when I get up and at night just before bed.  I’m no zombie, I’m just a little more even.  But lately I’ve noticed that the evenness is not keeping the anger side of the emotional spectrum away.  Which of course brings me to that stage: Anger.

Anger is the one that I don’t seem to be able to get through.  It’s hanging around a long time.  Anger is also the one that I’m not sure I’m ready to get rid of.  Anger helps me to feel alive.  My anger isn’t directed at Joe, well usually not, but directed at the cancer and the circumstances.  That’s where it gets a little dicey.  Trying to separate the cancer and the circumstances from Joe.  After all, Joe is the one with the cancer, Joe is the one who’s cancer has put us in this circumstance.  But then, how can I be angry at him.  He is the one with the cancer.  He deserves the sympathy, the empathy, the support and the love.  But I think I give him that too.  But I’m still angry.  My temper is short, my mouth simply can’t filter out anything anymore.  If I think it, I speak it.  That’s gotten me in some sticky situations.  Especially at work.  My role of “running the office” has been supplanted by our Sales Manager, who I now report to. UGH!  Of course the road at work has not helped my anger at all.  I don’t particularly care for our Sales Manager, never have.  She’s very nice but not the personality type that I have ever really been able to appreciate or enjoy.  No one can be that happy and perky all the time and it be real. Also, when she was hired I was told specifically by the owners of the company that I would not report to her but would continue to report to them.  Six months later,  they change their mind and the staff has to report to her now.  Given my attitude about her, that has not set well with me.  So it just ends up being something else to annoy me and make me angry.
So what do you do when you are stuck in a stage?  Just wait until it passes, if it passes?

I’ve been through the Denial stage very quickly.  I hit the acceptance stage and am not sure one can ever really accept.  Depression stage, I’m still in but thanks to chemical aids seem to be handling for the time being.  Bargaining?  Hmmm, that’s a tough one.  Seems like possibly prayers fall into that category.  Not that I have ever prayed that if God would just make him better then, I would do something in return, but isn’t just the sheer act of asking God to intervene, to assist, to heal and way of bargaining?  That one is a tricky one for me.  If prayer doesn’t fall in there, I think I have skipped that one completely.  Do you have to experience all five stages?  Does only experiencing four make it all invalid?  Doesn’t being stuck in one, i.e. Anger, make it invalid?

I’m not sure any of it makes sense or anyone can be pigeonholed into any formula of how to grieve.  We as individuals most assuredly experience everything uniquely.  We may have commonalities, but we were not all made from one mold, so how can we be put into a mold to validate any experience.

But I do grieve.  Daily, hourly, every minute and second.  It is never out of my mind.  It is so much of a part of my existence that I’m not sure I would be me right now without it.  Sometimes I wallow in it.  Sometimes I find it easy to ignore, sometimes impossible to ignore.  On those times, it can feel like I’m drowning.  Some of those times I wish I was literally drowning.  I wish I was brave enough, or coward enough depending on your point of view to not worry about Joe and the inevitable because I won’t have to experience emotional pain for long and will join him by my own hand very soon after he succumbs to the cancer.  But even with those occasional thoughts, I have to deal with the here and now.  The pain that Joe goes through and will go through.  The treatment that he goes through and the side effects.  The emotions that Joe goes through and be supportive of him.  I can’t be selfish and think about me.

Everyone continues to tell me to take care of myself.  Look out for me.  Don’t lose sight of my wellbeing while being Joe’s primary caregiver.  Those are easy words.  Not such easy deeds.  I always respond that I am.  How I’m doing that other than just going through each day doing the best I can, I don’t know.  I can’t focus on me when Joe needs my focus on him.  Besides, if I focus on me, think about me, that’s when the anger and the depression find their way back to the surface.  What good does that do either of us?  Being in a bad mood helps no one.

I have my time.  I still cry. I still rant and rave.  I still do everything I am told to do and think I shoud do.  I also try not to think too much.

Ramblings of a primary caregiver, or my life.   To be continued.

10-26-2012:  Joe has been in the hospital since 10-23.  Long story short, he ran an extremely high fever this past Sunday, had chemo on Monday and they drew blood for cultures.  Got the call before 8am on Tuesday that one of the cultures was already growing bacteria.  Gram-negative rods.  So he checked in on Tuesday, they been feeding him antibiotics and as of this morning, the plan is to release him today.  So now to  mindless ramblings.  Word of the day - tired..or maybe it should be exhaustion.  My schedule has been staying up at the hospital with him at night sleeping on the chair, getting up at 6am, going home to give pills to our ailing cat (Dolly), showering/shaving, drinking my morning coffee and getting to work before 8am.  This routine was repeated Wednesday, Thursday and today (Friday)..  4-5 hours of sleep each night, work and then quick trips home afterward to give the cat more pills and food, then back to the hospital to start over.

I was very short with Joe last night.  No particular reason other than tired and anger - not at him - at the stituation.  The sad things is these are the good days. What will I be like when it gets bad?  Jeez.  I'll be a zombie.  Someone put a stake through my head when that happens. "Walking Dead" reference...if you don't watch it just ignore.  Selfish, maybe I should be more selfish.  Take more time to myself.  Everyone says, "Take care of yourself".  I know, but in order to do that, I must be selfish.  Be by msyelf, sleep, relax.  Relaxation doesn't come easy if at all.  I'm always on edge just a little although some would say more than a little.  Those people would be co-workers.  Apparently during sales meeting this week, one agent said we needed to be more positive around the office.  Of course she didn't come right out and say my name, but considering that on Monday I had told her how I really felt about the decor in the lobby (cow turd brown everywhere) as she put yet another ugly pillow on the couch.  I complained about lack of color other than brown to which she replied that the pillow wasn't brown.  No it's now brown its gray.  How uplifting.  Anyway, I'm sure the comment was meant for me so for the past 2 days, Mary Al and I have constantly joked about being more positive.  Positive I hate the color and decor of the lobby mostly.  We did get one positive comment this week from a visitor.  One of the professional photographers that we use to photograph listings was in and said, "this looks nice" (that's what everyone says" but then she went on to point out how much she really liked the series of 10 photographs we have matted & framed on the wall.  Those are mine and Mary Al's contributions.  Since she is a pro, we felt vindicated in just how nice they turned out. 

Why do I obsess over the damn office?  Maybe because it's practically the only life I have outside of home. It's an escape mechanism I'm sure.  If I obsess and complain about that then I can ignore the real issues for abit.  Keep the real crap out of my head.  Cancer sucks!

Ramblings of a Primary Caregiver.  To be continued.

12/19/12: It has been a while and to be honest I have avoided the Ramblings section in an effort not to indulge in too much self pity. Since the hospitalization in October, things have been relatively quiet (relative to being in and out of the hospital). As posted in the blog, our Thanksgiving trip was cut short due to a HIGH fever so we spent the remainder of what was to be a vacation for us in Durham. I think I handled that part pretty well all things considered. With his fever on the Tuesday before Thanksgiving at 103.6, I really didn't feel we had any choice but to return to Durham. Joe sees it another way. Since his fever did subside late that afternoon, it just added fodder for him to hold over me. However, I still contend I did the right thing. Since then he has had chemo once, a three week dose, had a c-diff infection, low hemoglobin count which kept him from his second chemo and has had 4 liters of fluid removed from his belly. All in a typical day, huh?

I've kept control of my emotions for the most part but have noticed that sometimes it's the little things that give me the worst emotional reactions. A few weeks ago, after a good weekend and a good Monday, as I was leaving work I called Joe to see what we were doing for dinner in case I needed to pick something up. He simply said he was not feeling well, really tired and didn't really want anything to eat. That really isn't unusual, but for some reason, that particular day, on that particular drive home I felt like I had hit an emotional wall. I felt the life, the hope drain out of me. I almost cried but then couldn't. I was numb and probably very dangerous to be on the road driving. I have no idea how I drove home. I just know that eventually I was pulling into the garage. I sat there in the car, in the garage for about 30 minutes. Don't know what I was thinking about, don't know what I was feeling. I just shut down. Then I got out and went in the house and checked on Joe. He was laying on the couch, resting comfortably, drifting off and on to sleep. I ate a sandwich and went up to the bedroom. That is where I stayed. Joe eventually came up to see what was taking me so long. He must have thought I just went up to change clothes although I had told him I was going to bed. He probably was half awake and didn't hear me so he was concerned when I wasn't back downstairs when he was fully awake around 7pm. He still worries about me a lot. I still worry about him every moment of every day regardless of what is going on.
 
I had been complaining for the last month that his belly where his hernia is was getting larger and larger. At his last doctors appointment back on November 26th I asked if the hernia could grow and the doctor said that it could. That seems to make sense so I stopped commenting on it until the last 2 weeks. It seemed like overnight his belly had gotten so big and tight. The binder was no longer effective at pushing the hernia back in when he was standing; his pants would no longer stay up because his belly hung over so much; he had to resort to wearing suspenders instead of a belt to keep his pants from falling down; he could no longer button his pants in some cases. It was obvious that he was loosing weight since you can see it in his face, arms and legs, but his belly was getting huge (think Ethopian starving child with distended belly - that was Joe). I was stressing but Joe didn't seem fazed. I mentioned it daily which I know was annoying to Joe but from the time I would leave for work in the morning and the time I retuned it looked like his belly was larger. His appetite has been terrible. Unable to finish even the smallest of meals which of course would explain some of the weight loss. When the nurse noticed his bloated belly at yesterday's doctors appointment, I felt vindicated. I wasn't just an over protective spouse. I wasn't imagining things. After he had his ultrasound they said yes there was fluid but didn't think there was much. Even they were surprised when 4 liters was drained. That's a full 10 pounds. Even though Joe had to endure the procedure, and there is a distinct possibility that it will happen again, I was so relieved. There wasn't an immediate difference in appearance but this morning there was. His belly is soft rather than tight and I'm sure when he puts his binder on, which should fit now, there will be a huge difference. Everyone keeps saying that I should continue to be his advocate in the medical arena. I try very hard. I insist on things that the doctors & nurses give me looks for. But I keep on insisting. Many times I am proved wrong, but I keep on insisting.

I'm tired. Physically and mentally. If I could stay in bed 24/7 I would. If I could stay at home 24/7 I would. Work is one of the few places where I am distracted. However, right now it is December, the slowest timein real estate. That means that even here my brain isn't occupied. I still have too much time to let my mind wander. Thinking is the worst thing for me right now. Dreams are even becoming an issue. I don't dream about Joe and the cancer but I dream of random bad things happening to me. Last night it was a group of teenage terrorists. And that isn't even the most bizarre. I'm sure a psychologist could explain it all away. I'm sure it's just my subconscience coming up with negative scenarios reflecting real life issues I'm dealing with.

We have plans to go to Alexandria, VA via train on December 28th and return via train on January 1st. Joe so wants to travel by train. I have my fingers crossed but am extremely nervous about the trip. Every trip in the past 2 years has had at least one day of fevers for Joe. Hoewver with each of them, we've had the car and could if needed go home. This time we will be at the mercy of Amtrak. Before the trip however we have to get through the Christmas holiday. Joe has a piano concert on Sunday evening the 23rd and I'm just praying that he get's through that and can relax. I issued an edict 2 weeks ago to both families that we would not be traveling for Christmas. If family wish to see us, they will have to come to Durham. The edict also included the fact that no one should come on Christmas day expecting to have a meal. They can come in the late afternoon for present exchange but we will not be cooking a meal for anyone. My family has chosen to come for a couple of hours on the afternoon of the 23rd and Joe's family has chosen to come on Thursday the 27th (the only day that week that I am working...coincidence?....I think not but it is fine with me). Other than Brittany & Josh I don't want to see anyone else anyway. I plan to take an extra 15 minutes or so and go home for lunch on Thursday just so I can see them. I'll be on my best behavior. A hello to his mother, no acknowledgement of his sister or Mark's existence, and talk with Brit and Josh. Brittany has expressed a desire to see me and I want to see her, so I will make it happen. Of course I dred even seeing the others but for 30 minutes I can keep from telling his sister to go to hell.....or at least I hope I can. I may end up with teeth marks in my tongue and bleeding profusely from the mouth but I will do it. Oh well, this is the end of 2012. Hoping for good things in 2013.

Ramblings of a Primary Caregiver. To be continued.