Update On My Father---Not Good

88 y/o in four days, stage IV base of tongue cancer w/ lymph node involvement both sides of neck, just finished week five of radiation with weekly Erbitux chemo

He has not lost too much weight throughout treatment so far, but only weighs 139.6.  He was in the hospital when we got there, as he had tried to swallow his pills with water but they were aspirated into his lungs.  He is on the PEG tube full time using it for 100% of his nutrition and meds.

He had what they thought at the time was aspiration pneumonia but turned out to be an upper airway obstruction causing almost constant coughing.  He is not being medically compliant in some ways, i.e., he refused to fill the prescription for the pneumonia antibiotic.  It is only coincidentally fortunate that it turned out he didn't need it after all.

However, he also did not fill the script for Diltiazem (heart med) to be taken as smaller tablets than what he had, several times a day.  He was without this medication for seven days while he tried unsuccessfully to crush the larger one, use a capsule of it, all to no avail.

Finally yesterday he got scared that he was without it for so long.  His cardiologist prescribed a smaller amount that can be crushed more easily and taken through the tube. 

It was a most difficult visit.  He is so angry and mean that it was unpleasant (understatement of the year) to be around him.  Having cancer has only aggravated his already-negative personality.  He yelled, he screamed, he swore, he commanded people do this or that, sit here or there, telling us when to come, when to go, acting like a dictator.

He said he knows more than the doctors except for his oncologist and his nurse.  SCARY!  He decides what instructions he will follow and what he won't.  When I tried to gently suggest something he would have NONE of it.  I got yelled at as if I were a child.  He only tries something if HE thinks of it.  Then he wants all of us to help him.  But we dare not suggest anything.

The irony of all this is that he doesn't really know what he's doing.  He has all his doctors and nurses calling me so I can receive the information, then call him and interpret it for him.  I don't mind doing this, but he doesn't even try.

I guess I am wondering how much of this is cancer talking and how much is just him.  He has always been like this, but during his treatment he has become waaay worse.

I personally doubt that he is going to die of cancer.  I think it will be of some other glitch, like not taking his heart medication for a week, or not filling an antibiotic for what was thought at the time to be pneumonia, or, who knows. 

He has now begun to accuse his housekeeper of stealing things.  Always those things have been found in the exact spot where HE left them.  He pushes people away at exactly the time when he needs us most.  We are all willing to be there for him, but he acts like a bully king, and it is most awful to be around him.  His house is a house of fear and tension.

My husband told me this morning that I was talking in my sleep last night, something about feeling so much guilt.  I don't remember that at all.  So this is all penetrating even my subconscious, and it's hard to shake free of it.  My husband told me, when we were there, after he heard my father verbally abusing me, that I am going to have to find some way of allowing him to die on his own terms.  A good friend has said, "He's going to die the way he has lived--trying to be in control, and accepting feedback from no one."  It's all really sad.

You can tell that I am in an emotional quandary, and I could really use some words of encouragement.

Thank you.

Maggie 

Hi Maggie,

I'm sorry to here how your father's treatment has progressed.   It sounds like I have a father much like yours.  Mine isn't mean or abusive, but he won't listen to anyone.  I always tell him that "You can tell a Ray Bennett, but you can't tell him much."  Some people's personalities can be so controlling that they can become unreasonale when they feel a loss of control.  With a disease like this, the patient experiences the loss of any control, at least I did during my treatment.  It was always do this, do that, be here , be there and not being able to say "STOP, I DON'T WANT TO DO THIS TODAY!"  At his age, there might also be a form of demetia developing that causes his rage.

 I've said before in earlier postings that this disease and treatment is harder on the friends and family than it is on the patient.  The patient has to endure but everyone else has to endure and feel a sense of helplessness by not being able to make it all better.  It is improtant that you take care of yourself.  

You can make it through this, I assure you.  As the saying goes, "That which does not kill us, makes us stronger."  A year from now you will be a stronger person and once your father's treatment has ended and he has recovered, he might realize how wonderful life is and begin to cherish the time he has left.

 I hope all goes well and take care of yourself first.

Glenn 

Your father, sadly, sounds similar to mine.  He also is not completely compliant with some of his medications and instructions from Drs.  He doesn't necessarily say or think that he knows more but he just wants to do things HIS way.  Also, like the father you described, my father is extremely angry and yelling and swearing at everyone, nobody can do anything right, my brother and I "should be ashamed of ourselves" for his perceived lack of care and concern... it goes on and on.  Right now, his target is my husband.  Needless to say, this has put me in a difficult spot.  My husband, understandably does not want to be around him but is trying to support me in every other way he can.

My father has always been the kind of person that you describe your father as being.  I hoped this disease and facing his own mortality might change his perspective, but it has not.  His anger and (really) emotional abuse of those around him has just intensified.  I think it is his personality, his coping style, if you will, for dealing with his cancer.  It is sad and hard on the rest of us.  What your friend said is absolutely rignt.

Bless you for all you are doing and enduring.

On 9/6/2007 Chi-girl wrote:

Your father, sadly, sounds similar to mine.  He also is not completely compliant with some of his medications and instructions from Drs.  He doesn't necessarily say or think that he knows more but he just wants to do things HIS way.  Also, like the father you described, my father is extremely angry and yelling and swearing at everyone, nobody can do anything right, my brother and I "should be ashamed of ourselves" for his perceived lack of care and concern... it goes on and on.  Right now, his target is my husband.  Needless to say, this has put me in a difficult spot.  My husband, understandably does not want to be around him but is trying to support me in every other way he can.

My father has always been the kind of person that you describe your father as being.  I hoped this disease and facing his own mortality might change his perspective, but it has not.  His anger and (really) emotional abuse of those around him has just intensified.  I think it is his personality, his coping style, if you will, for dealing with his cancer.  It is sad and hard on the rest of us.  What your friend said is absolutely rignt.

Bless you for all you are doing and enduring.

 

Thank you so much for responding to my post.  I have begun to disengage a little and that is helping me.  Rather than asking him, for example, what prescription he has, I basically "smile and nod," because I know he will have to put the phone down, look for it, come back to the phone, tell me he can't find it and that he'll call me back.  Hassle, hassle, hassle.  So I am staying on the surface of things.  This is unlike me, but it is helping  emotionally.

He called me yesterday before I even had the chance to call him to wish him a happy birthday.  He turned 88.  He called later in the afternoon, too, both calls to tell me how he planned to spend his birthday.  There was nothing about how treatment was going other than he felt good.  And I am grateful that he was feeling good.

When you say that your father's anger and emotional abuse of those around him has intensified, I could have written that myself.  Yes, I thought having cancer might mellow my father some, but it seems to have done the opposite.  He is a tight ball of explosive emotion at the least thing, and he cannot tolerate the lack of control.  He is making us all crazy.

My father's personality traits, which have always been disrespect, distrust, anger, negativity, rudeness and arrogance, have gone off the charts.  As I hold myself a little more at bay, not calling as frequently, not getting into details in conversations, I find that I am coping better.

At the same time I must say that this is very hard for me because I want to offer whatever help or suggestions I can that might make things easier for him.  But since he pushes me away so solidly, I need to strike a balance in how to care about him while also caring about myself.  It's a delicate balance. 

I am sorry that you are enduring similar sorts of things, and I am glad to be able to talk with someone else who understands the emotional impact of a family member having cancer.

Again, thank you for writing. 

By the way, I am wondering if you are from Chicago, by your name, Chi-girl.  If so, I am not far from you.

Maggie

Hi There,

Can I just say I can relate to some of what you had to say about how demanding your father has become.  My father became very stubborn and demanding throughout his cancer.  But that wasn't necessarily the way he was before he became sick.  I do feel the cancer has something to do with it.  It can be a very confusing and terrifying thing to go through.  My father wanted to do everything his way and didn't trust anyone outside of the family.  He thought they were all against him.  We would ask him to rest and he wouldn't.  He would stand up all day long and most of the night too sometimes.  He was afraid to lay down in case he just died.  He was fighting so hard against the cancer.  Let me give you a little background information.  He was diagnosed 18 months ago with cancer on the base of his tongue.  He had surgery and they removed it and followed it up with radiation therapy.  The doctors were confident that they had removed everything and he was doing very well.  It wasn't until a few weeks later that he started to complain of some pain in his hip.  He would tell his doctor about it, who dismissed it as being related to a small car accident he had.  He went through so much pain for such a long time without the doctors doing a thing for him!  When it got so bad he could no longer walk they put him on Morphine.  Then ordered a bone scan to see what was going on.  He ended up in the hospital because he was in so much pain.  They discovered that his cancer has spread, through his blood, to his bones and he had some spots of cancer on his ribs and liver as well as his hip.  By the time they disscovered this it was too late.  They said they could give him a some radation therapy to help kill the pain but he only had a matter of months to live.  6 weeks later he passed away at home, where he wanted to be.  He passed away peacefully in his sleep, which is what I was hoping for.  But up until 2 days before he passed away, he was walking around and standing for long periods of time and just being stubborn and demanding everything to be his way.  When he eventually had no other choice but to lay down because his body was getting so weak he could no longer stand he passed away quickly.  That was a good thing for my father.  He hated being lay down or incapacitated in anyway.  My father was always doing things, fixing, making stufff.  He was a wonderful man who I miss terribly.  It was his funeral last monday.  I still cannot believe he has gone.  Just grit your teeth and hang in there.  Let him have as much of his own way as possible.  After all it is his life.  Helping him and dealing with all the stress and hard work that comes with it is something you will look back on and smile at.  It sounds strange but it's true.  Be strong.  I would give anything to have him back and being stubborn again!

Paula x