My Dad is 79 and has had Multiple Myeloma for 11 years. He was in remission for quite awhile and the last couple years it has slowly creeped back and he did another round of chemo which again put him in remission but which weakened him to the point him being nearly bed ridden. He is still able to get up and move around...just not for very long. He has multiple bone fractures, some broken ribs, and overall he's just very weak. In April his doc recommended another round of chemo because the cancer is coming back. Anybody looking at him would know he cant do chemo...it will kill him or at least make him permanently bedridden. Plus...he even said that he is too weak to get in the car to get to the doctor...he barely made it to the last doctor's appointment. But of course he said "I will think about it" and he just never took any action so we figured he was done with chemo.
Nothing ever really gets discussed because my Dad just won't go there ...unless pushed...but since he's a bossy, stubborn, controlling, and generally difficult man we rarely do go there...we do try but it's usually an exercise in futility.
He is in constant, and (depending how he moves) extreme pain and believes that Tramadol and 4 Baby Aspirin are the only pain regimen he needs.
He and my mom still live in their (too large and expensive for them ) home.
Mom (also 79) has rheumatoid arthritis, has had a few mini strokes, etc...but still drives and for better or worse is Dad's primary caretaker. I have control of their finances and between me, my brother and sister we are at their house several times a week to help.
Needless to say the last 3 or 4 years have been really rocky in our family.
So fast forward from the last doc visit in April until now when my mom finally got fed up and brave (YEA! Mom) and called Hospice 3 weeks ago. They came with a hospital bed (my dad is nearly always horizontal (props himself up just a little bit and eats that way ..something he thinks is absolutely normal) , a wheelchair, a shower stool, some pain patches and wonderful, caring people. The whole family was so relieved. Yes! now dad can be comfortable, can sit up and eat, mom can get some emotional support (from someone other than her kids) All good right?
My dad stated last week that "Hospice is a racket..they just push their services on you so they can get paid"....The pain patches are actually helping him! I think he's trying to figure out a way to get out of being in Hospice...there is no other way...believe me if there was a way we would do it.
I totally understand that he is the sick one, he is in pain and is dying, this is his journey. And I don't believe he understood at all what Hospice is (mostly because he never, ever stops talking and the Hospice people can barely get a word in) and he hasn't really grasped that he is dying. We all have accepted it but I don't think he ever will so he operates as if it's just not really happening.
He just makes every single thing so damn difficult.
Holy crap..I know that sounds selfish and that goes back to my main question....The last statement he made about Hospice being a racket set something off in me that made me intensely dislike my father in a way that has bothered me and kept me awake at 3:00 am watching the Home Shopping Channels.
I love my father, he was a wonderful and loving dad. It bothers me so much to have these feelings toward him but it is so hard to have sympathy for him because he is so difficult and is so unreasonable about nearly everything. Part of the dynamic in the family is I am the only one to dare to challenge him, to question him and he doesn't care for that. Some of the issues his illness and me taking over the finances, etc., etc. have brought up are just too important and I can't just not deal with things...Most of my family believes if you don't talk about it it's not happening. Maybe that's why my dad brings up such feelings of animosity..he doesn't usually deal with anything and I need to deal with things?
I know it's not his job to be likeable right now...is it too much to expect for sick person to be reasonable?
I dread seeing him now and it never used to be that way. Everything he does or says just makes me angry.
p.s. he has allowed the pain patches to do their thing and is feeling a little better and now wants my mom to take him out to get a haircut....but he hasn't been out of the house since April...not sure he will actually go...but my biggest fear is that he is going to quit Hospice because he thinks he doesnt need it and want to go back to his oncologist...which is his right but in my opinion is insanity.
Thanks for reading if you made it this far
My son was angry, just like you. Be angry at the Cancer. Yell at cancer. spit on it, whatever it takes. But play the game with Dad, let him be in control, let him think he is cheering you up. Even if you weep later.
that is dad in a nutshell
Thanks!
my favorite preacher in the world is now getting treated for depression I think because after his mom died, he could not really handle the emotions around that and his own mortality - he sure tried, and gave a whole lot of "memento mori" type of services and sermons that really were in their own way very, very good...but maybe overdone. I mean normally we only get ashes once a year for the start of Lent, and OK, there's All Hallows and Halloween to honor all those gone before....but darn near every other gospel text seemed to have that spin on it.
and I have a hard enough time not thinking about doom and gloom and deterioriation all the time for myself and my hubby at age 56 and 65, and I need another round of major depression like I need a hole in the head.
granted, this leads to some pretty sucky coping mechanisms...I mean you would like your dad to have heart to heart talks and be comfortable making himself comfortable enough to make a few more pleasant memories with you, and accept good help that makes all of your lives better at a difficult time...but that would mean he would have to acknowledge he is sick. hospital beds mean you are sick, you know... pain patches mean you have something causing pain that is worse than tramadol and aspirin can handle. of COURSE everything he is doing is normal, because he would not be doing it if it was something sick or dying people did it. there is such a thing as adaptive denial and where it turns pathologic is a blurry line. I mean face it, the guy knows, he just does not want to know.
whatever you believe about eternal life, it really is the great challenge for us all to look death in the face and deal with living as well as we can instead of pretending we will be here on Earth forever.
you are NOT selfish for WISHING your dad would handle this more forthrightly. Possibly he would if he could. Possibly he still will at some point, and your conculsion to back off the pressure to give in to the sick role thing might actualy work, since he won't be focusing on defending himself from it. You'd be a LITTLE selfish not to forgive him, he is probably doing it all the best way he knows how.
I wish my family had handled it all a lot better too; hubby is not so bad, son is awful and makes it worse for us all the time, and me...well, I need to find a way to not pretend AND not dwell. I have some serious living left to do and if no one else in my family will do it with me I really will do it myself.
...and I find I cannot help thinking that a dear (really, no sarcasm) friend of mine on FB who WON'T QUIT SHARING these platitudinous text photos saying "hugs, love, remember you never know if this will be the last time you will see someone you love share this if you love me and you agree" needs to do a PROLONGED ice bucket challenge by jumping into a nice cold lake! JUST venting. This will NOT appear on FB on her status...probably...unless I get really, really hormonal again...
Thanks!
I forgot to add that Hospice brought him a hospital bed and he will not even get in it..."What do I need that for?" It's crazy making but I more and more feel sad for my dad that he is not able to talk about any of this. Must be very lonely to be him....he's forever putting on and act for us all..."everything is fine.
It's just not a good feeling to know that I don't like my Dad lately...feels wrong but it's the truth.
I would never abandon him or stop trying to help him...I, for my sanity, don't call every day like I used to (my brother does that now)...I limit my visits and interactions and it helps a lot.
We sometimes get this romanticized version of how the end of life might be...you will get a chance to say everything left unsaid, the dying person will accept it and maybe get a chance to wrap things up with all of his friends/family..I'm sure it does happen in some cases but seems like that's the Hollywood version...this experience is nothing like that. just the opposite.
The quote from my3kidsok will stick in my head forever now:
"if he doesn't want to acknowledge his condition. Who am I to push it?"
I think I've been in my own way pushing him and he's just pushing back...which ticks me off...so I'll stop pushing.
THANKS EVERYONE!
thats precisely what my mother said about hospice and end of life . she loved her old modular home and felt like no one else deserved it . i agree with her . youre probably just exhausted roseanne . your dad is exhausted, sick , and facing his death . hes probably short tempered and angry too .. i think you need a good sleep aid to knock your brain out for a few good hours sleep a night . exhaustion compiles ..
You sound like a very sensible, perceptive and caring individual. You will get through this. If you find yourself watching too much late night shopping tv for extended periods, it may help you to discuss your feelings with an objective outsider -- a therapist. Not because there is something "wrong" with you that needs "fixing" but because it might help you sort out your own grief a little easier.
When my husband found his lung cancer had spread to his bones, as we were driving home, I asked him what he was feeling. He shouted at me. "What the **** do you THINK I'm feeling??? I'm dying!!! I don't want to talk about it."
We never spoke of it again. I never brought it up. Neither did he. We never said good bye, we never reminisced about our wonderful life together...nothing. But, as you so aptly put it, "It was his journey."
And, as he neared the end, I was angry at him for that. Really angry. And, as the pain meds took over, all too quickly it was too late. And I was still angry. When I really put my mind to it? I can get angry allll over again. He cheated me. But I know that's part of my way I handled the grief I felt for so long . . . the grief that began long before he died and stayed around long after.
You may be experiencing grief the same way I did.
Your dad is 79 years old. If the oncologist thinks he's up to chemo (if your dad suddenly decides to go that route), he'll perform it. Not because it will cure him, but because it will give him hope. Right now? He has none. And he hasn't yet made peace that he's coming to the end of his life.
If your dad DOES elect chemo and the doctor DOES perform it, perhaps it will shorten his life or cause it to end abruptly. That may be better than what lies ahead for him without it. We cannot know.
It's his choice. His anger? Try to forgive him, We generally only get a "death sentence" once. It's not as if we have practice. Everyone thinks they know how they'd feel and what they'd do. They don't know jack until it's them.
Forgive him. He's busy fighting the battle of a lifetime. And, as you so wisely said, "It's his journey."
God bless.