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