No disrespect by the title of this thread, but I must say I am rather frustrated with what is going on.
My dad has hx of alcoholism (and addictions of other nature as well). When he first got terminal lung ca the doctors told him how addiction is not a concern now, only pain control. Well, I believe he either never really fully understood the pain scale or he manipulated to get strong opiods to medicate anxiety (he has Xanax, but I think he prefers the completely out of it state of Oxy--until he became completely "gone".). Anyway, he is now sitting at 600 mg Oxycontin per day when you combine SR with IR. He is so out of it that he nods out in from of the fridge for 3 hours!!! It has gone from bad to worse! Every time hospice comes my dad says his pain is between a 6 and 8 on the pain scale but will tell us earlier that day that the PHYSICAL pain in his chest is only a 3 but his MENTAL pain is off the charts. We try to explain that Xanax is for mental pain, Oxycontin for physical pain, but no matter what, every time he has some anxiety (which is all the time) he reaches for that IR! Well, because of that every time they come they are upping his drugs. Last time, he couldn't even talk with the nurse for the assessment w/o his head falling and she wanted to DOUBLE the whole freaking dose! My dad will even say he doesn't like how his mind feels, how doped he is, but he doesn't speak up. I know he is just too afraid of what is too come.
It is frustrating cuz on one hand my Dad will say he thinks he is too doped up, that we are right he did not understand the pain scale, but then when the nurse comes he is like mums the word! Last time she visited we all were there (my siblings) and everyone ended up in this big fight :argue: , speaking for my Dad. Finally I spoke up (I could tell the nurse was frustrated) and said, "Excuse me, but shouldn't my father be able to speak for himself..I mean, is he still ABLE to speak for himself?" The nurse said, "Yes". So I said, "well, ask him then!" (regarding whether he wanted the medication doubled). We were so very concerned because now he has become incontinent of bowel and urine at night, and most recently, has developed tremors. The nurse also said that putting him inpatient for one week and getting him on Methadone was another option. WHAT?? Jeez, we don't want to do that....He had one month to live one month ago, the last thing we want to do is put him in a facility to "detox" from Oxycontin. Jeez.
I don't know if we are all fighting a losing battle anyway. His appetite is close to nothing (don't know if that is influenced by the Oxy). He has tremors now and they did decrease the Oxy because of that. He can't hold his bowels. And according to him, pre Oxy, the only pain he had was in his chest!! I don't know if it is just the drugs causing all these symptoms. He is taking something like 50 pills a day!!!! You know, senna, colace, xanax, mediclophan (nausea creme), Oxy SR and IR. He can't even remember what day it is and DEFINITLY can't figure out when he gets more pain meds. I don't even know how he even can remember he is in pain!!!
he was supposed to have only "weeks to months" according to the doc back on St Patty's Day. with his SCLC, the tumor near his heart is the big prob, but now he has a visible mass on his back near his kidney. We want my Dad to lead a pretty OK quality of life while his pain isn't so bad, but now, because of these drugs, he has lost almost all dignity. Am I wrong to assume this? Is this just the end, like it or not? I just wish these drugs were never started cuz now we will never know how he really would have felt! :crying2:
If you have any suggestions on how to deal with this situation, I would like them..anything that has not already been suggested.....
My thoughts are with you Thrashej. You are going through a very tough time right now and the depression isn't helping anything. It sounds like your school is pretty understanding about taking an loa. Take some time for yourself. You said that you want to be with your Dad. Think about what is important to you. Death is so different in everybody. Some people can live for months and others a lot shorter. It is so hard to tell.
Don't get defensive... I am not responding to just you.
Everyone,
People do gravitate towards professions that are compatible with or reflective of their character... which is usually a product of their family system. For example: people who become farmers tend to be people whose character is compatible with and reflective of wanting to work hard, like the earth (dirt) and growing things. People who go into the "caring" professions tend to be people whose character is... SURPRISE!!!!!.... caring.
In family systems theory, "caregivers" are people within a family system who are trained to feel good about themselves (nurture their self-esteem) by "caring" for others.
Nurses tend to be people who feel good about themselves by caring for others... and as you (Angie O'Plasty RN) say, that is a good thing and we could use a lot more of it. But every coin has 2 sides. Nurses nurture their self-esteem by caring for, or sacrificing for, others... sometimes to the neglect of the Self. Administrators of hospitals (and other healthcare agencies) are perfectly aware of this and make lots of $ by pressing nurses to their limit. They know nurses nurture their self-esteem by "caring" and take full advantage of that fact. After all, self-esteem trumps money... nurses will sacrifice a great deal in order to nurture their self-esteem... including their financial success... which is why nurses earn relatively less than many others in the healthcare industry. "Caring" is both good and bad... or good up to a point and bad beyond that point... because after that point it becomes self neglect.
It is interesting to see the responses in this thread; i.e. from nurses who are, by virtue of their chosen profession, "caregivers." As "caregivers," nurses put a premium on "caring." You all "God Bless" and "pray for" patients & families to a fare-the-well and expect to get kudos & thank you's & 'atta boys in return (stroke your self-esteem) while offering little that is actually helpful.
One of the first things told to me by a family of one of the first hospice patients I had was that they did not care how much I "cared," they wanted something useful. As far as they were concerned I could go "care" somewhere else, they wanted practical help.
Y'all seem to think this is some sort of "caring" contest. As nurses, it is perfectly obvious that y'all "care" (else you would not have become nurses in the first place.) But what thrashij really needs is some practical advice... and advising her to jeopardize her career in a vain attempt to fix someone who cannot be fixed is poor advice.
I would advise thrashij to love her father all she can... your job is to love him not fix him. Destroying your Self in an attempt to change your father and his life would be an exercise in futility. Destroying your Self will not save your dad.
As for all you caring nurses, you need to read more family systems theory; e.g. John Bradshaw. Hospice, perhaps more than any other branch of nursing, deals with family systems. Going into hospice without a good background in family systems theory is a little like going to a gun fight with a knife.
Additionally, dying process strips people down to their real Self. It dissolves the façade that people hide behind during their "life." In order to relate to people in the extremely vulnerable state, you must be willing to strip your Self of your own façade... which includes your "caring" mask.
Yes... you do "care." That is real and valuable and loving and comforting. But can you help?
But what thrashij really needs is some practical advice... and advising her to jeopardize her career in a vain attempt to fix someone who cannot be fixed is poor advice.
her instructor already told her that she could take an incomplete and make-up her clinicals. that is not jeopardizing but merely delaying.
i don't see the poor advice in wanting to encourage thrash to spend any remaining time with her dad in a meaningful and valuable way.
furthermore, it is the epiphany of insensitivity to argue one's points in the name of being right. thrash needs our support, not this egotistical bickering.
Yes Leslie, her instructor did (apparently) tell her she could delay… which in effect, would be to sidestep the issue. It would be to say, “No, I do not have to deal with the dysfunctional nature of my family and the role I was assigned (caregiver), I can just put it off… for now… and pretend.”
There is nothing wrong at all with spending as much time as she has available with her father “in a meaningful way.” That would, in fact, be wonderful. However, jeopardizing her career and life trying to fix her unfixable family would be the equivalent of pouring her life’s energy down a rat hole.
And whose ego is at stake here? You (as nurses are wont to do) argue that your ego (recognition as a “caring” person) is more important than giving thrashej advice that is actually helpful. You can sit in the corner and “care” yourself into a lump of gold, but that does not do one single thing to make thrashej’s life any better.
Thrashej has a real life problem here, and how much you care is quite irrelevant.
You advise thrashej that you are “so sorry.” Congratulations… but that does not do one single thing to help her.
You advise her to “follow her heart,” but if you know anything at all about family systems you would realize that that could be easily confused with the programming she received in a dysfunctional environment… and that if she follows the programming she received in that dysfunctional environment, she will be sorry.
As Bradshaw points out, the greatest tragedy of all is going through life never knowing who you are. Thrashej is not her father’s (or her family’s) savior. She is thrashej… an independent an valid individual in her own right. She cannot fix her family or make their dysfunctional lives pure. She can love them despite their imperfections and obviously does… but hurting her Self to save them is a delusion and a manifestation of the dysfunctional relationship she grew up in. You are encouraging her to accept that dysfunctional relationship as valid and functional. It is not.
Again, dying process teaches us how to live… or in this case, how not to live. Demanding that someone else live their life for me is not a good idea and dying process has a way of making that (painfully) apparent.
I want to be there all the time! It is a very dysfunctional place to say the least and mentally being over there is draining, but I want my Dad to know he is the MOST IMPORTANT thing to me!!!
let us know how it went today thrash?
many of the hospice nurses here have had sev'l yrs experience in dealing with all kinds of pts and all kinds of family dynamics.
if you feel more comfortable with pm'ing, you know how to reach me.
Well, what concerns me is thrash not wanting to leave her room. It sounds as if she's getting quite overwhelmed with this.
I don't know what staying at your brother's to care for him will actually accomplish, thrash. He has a hospice nurse, he is refusing an aide, and he is refusing your help.
Maybe stay there and go to classes from there? Maybe take a couple of days from clinical and make them up this term and sorting out your own feelings?
Your family is telling you to stay in school. Don't let guilt over what you think you're supposed to do interfere with the sensible thing. Withdrawing this close to the end of the semester is only going to throw all of this term's hard work away, and your dad, honey, is still going to die.
Spend as much time with him as you can. Let the hospice nurse work out getting him to accept an aide. One thing I learned in AA was, "Don't '12-step family." In other words, sometimes a bit of distance can be healthy.
Specializes in LTC,Hospice/palliative care,acute care.
Let's bring the thread back to topic-and away from arguing with each other.........Many of us have been where you are right now-I'm sorry for what you are going through.You've got to do what is right for you...Death is irrevocable-you can "start over" with everything else..My family and I made several life changes to cope with my mom's terminal illness and I have no regrets..It's very hard to separate your feelings and desires from your dying loved ones wishes but once your loved one makes their wishes known then consider it a gift they've given you and be their advocate.......It sounds as though he is deteriorating fast-actually his care will be easier to manage when he's in bed.I know how you feel about wanting to be with him as much as you can-but I've seen people stay at bedsides literally for days while their loved one hovered-it seems that sometimes the dying have other plans.If you are not there for those exact minutes it's really ok-what matters is you've done as much as you could carry out you dad's final wishes...To keep him comfortable his way....He may want to die alone to protect you.....Utilize the resources available,follow up with grief counseling.Take care of yourself .....
There is a song by Elvis Presley that describes a scene in which a dying man is speaking to his wife, who has fallen asleep at his beside. He says…
Softly…
I shall leave you softly
For my heart would break
If you should wake
And see me go.
You may want to be there, but that may not be his wish. If he wants you there when he dies, chances are you will be. If he does not, chances are you won't.
Specializes in Geriatrics/Oncology/Psych/College Health.
Req_read, you've got some powerful and thought-provoking posts here. I thank you for the other side of the coin. I think thrashej is benefitting from two distinct and equally valid viewpoints. I confess I tend to lean toward req's thoughts given my relationship with my own father. I hope thrashej finds the needed strength and peace to deal with this, but doesn't hang all hopes on getting validation from a troubled parent-child relationship so late in the game. My concern is that if it doesn't come, that may cause a spiralling down in depression. Please take care of yourself. The last x many years of turmoil are not going to be solved in the next two weeks. I wish you and your family well.
John Bradshaw stated in his first ten hour presentation on PBS on family systems that Alice Miller claimed 96% of American families are dysfunctional. Bradshaw said he disagreed… ALL American families are dysfunctional, he said, it is only a question of degree.
It is axiomatic that “no one is perfect.” That is the same as saying, “We are all dysfunctional, it is only a question of degree.”
We can accept generalities, but are inclined to grow argumentative over particularities. I can accept the fact that, “No one is perfect,” but am inclined to grow argumentative when it comes to discussing my particular imperfections.
When our forefathers declared, “All men are created equal,” we thought that sounded good… until it came down to discussing just exactly what constituted a “man.” Two hundred years later we have amended our definition of “man” to include women, blacks etc. (after having spilled tens of thousands of gallons of blood haggling over the particvularities.)
Now we (hospice nurses) are faced with imperfect families… many of whom ask us, “Gee… what should I do? Should I play into the dysfunctionalism of my family or try something different?”
I say, “Well, addiction is trying the same old thing over and over, each time expecting a different result. Why not try something different.?”
In this particular case we have thrashej trying the same thing over and over, each time expecting a different result. What she was taught was to live her life for someone else… someone who had no intention of changing anything. My suggestion is: Why not try living your own life? If someone else wants to destroy their life… fine. You can love them even while they destroy themselves. But that is no reason why you should destroy your Self.
Some nurses are inclined to say, “I love and care for you even while you destroy your Self.” That is fine and a worthwhile endeavor, but not when the nurse could provide information that would prevent that person’s destruction… especially when the impetus behind the statement amounts to nothing more than wanting admiration for “caring.”
If you are on a lonely, two-lane road in the middle of nowhere and run out of gas and a car stops and the driver says, “I love you and care for you deeply,” then drives on, and another car comes along and stops and the driver says, “I don’t give a darn about you but I do happen to have a gallon of gas I will sell for fifty bucks,” which of those two would you appreciate more?
So you, as a nurse, love and care… great… thanks… I’ll make a mental note. But what have you done for me lately?
In truth, what you have done for me lately is really the measure of your love. If you give me advice that only perpetuates my suffering (advise me to continue honoring the dysfunctional system I grew up in) is that really caring? Or is that just an attempt to assuage your ego by making an appearance of caring?
They call it “tough love.” What that means is, telling someone that doing the same thing over and over is not likely to yield a new result.
Run to your daddy and believe the same old line about how he can’t get along without you? Uh-uh. Not this time. Daddy spun the web of his own life and is responsible for the outcome. You are responsible for yours. Tough, but true.
At this point, I am not trying to "fix" my family. I got over that hope a long time ago. Right now, my heart is being ripped out and I love my father. I don't want to see him go, dysfunctional and all. I want to be with him because I know I won't have time with him later. I try to just cherish the moments and put up with the bs cuz the bs comes with the people (unfortunately). I want my Dad to lay down every night in a clean bed, not one stained with feces. I want him to know he was important and we were all there when he needed us most.
Also........my family wants to see me finish school, but that is it! I don't even know if I want to finish school! I got into nursing unsure (because...surprise, surprise! I DON'T have a caregiving personality!) and I will leave nursing school unsure. I am very unsure of almost all things in my life so I guess I am a case in point for Bradshaw (is that John? ) The reason I initially pursued nursing was for security and stability and a slight interest in medicine. That is it. That may have been a mistake.
I realize my mental health is THE MOST IMPORTANT thing. That is hanging by a thread right now so I thought it best to take my LOA from school. Safe patient care is also a concern there too, if I had stayed in school..... As long as I finish this clinical w/i 7 months I lose nothing, no credits, just time I guess....and my friends:madface: But, without dropping for now I don't think I could mentally survive...
SECOND most important thing RIGHT NOW to me is my father knowing I cared and that he was more important to me than nursing school. Because while staying in nursing school may be important, I still think caring for my father takes precedence. I want to take care of him at a time when he needs it and help my siblings cope, not fix him or them. I just want to be there for them, even if they are messed up. I would want someone to be there for me!!
Anyway, I am going to take this time to enjoy my Dad, maybe get in shape, deal with the changes at my job, and preserve my mental health. Maybe come October I will really know where my life is headed. Thank you all for responding to me even though I ultimately had to make the decision. :kiss
I am kinda laughing about the dysfunction thing and the whole "caring for others before you care for yourself" thing because lack of that trait is what earned me the title of family bit!%!! Lack of this trait is also what made me think all this time nursing may NOT be for me!!! I am sure I am a bit like that, but to nowhere near the extent as my siblings! I got other problems, lol
:crying2: 
beautifulb
237 Posts
My thoughts are with you Thrashej. You are going through a very tough time right now and the depression isn't helping anything. It sounds like your school is pretty understanding about taking an loa. Take some time for yourself. You said that you want to be with your Dad. Think about what is important to you. Death is so different in everybody. Some people can live for months and others a lot shorter. It is so hard to tell.