Hospice has doped my dad!

Specialties Hospice

Published

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.:o

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: :crying2: :crying2:

If you have any suggestions on how to deal with this situation, I would like them..anything that has not already been suggested.....

Thanks everyone!!!:flowersfo

Specializes in cardiac/education.

Thank you.

My Dad may be coming to live with me now. He won't be real specific with his reasons, maybe he just does not trust my brother. I have an extra room, but it is chock full of everything BUT a bed and dresser so I will have to go out and get that stuff and clean house like crazy. Everything has been neglected for so long. I don't know how I am going to do this and school. I can cut my hours in the ER, but we are going thru a whole computer conversion May 1st that I am required to work. My sister will now come to my house and help out instead of going to brothers. The cancer is at a point now where you can see it protruding from his body. He has what looks like a tennis ball poking out of his back. The nurse said she saw the PET scan when they released him for hospice (one month ago) and he "had cancer everywhere". Oh, ok, news to us.:uhoh3: Yesterday was a good day tho. Dad's vital signs are still really good...his BP is better than mine!!! When the nurse askes if he has any more questions he always says, "Yeah, how long?" and they are like, "Well, we don't know but you are definitly not going to die today!!!" and laugh. He says he is dying this week, but he said that last week. Hard to believe it isn't coming very soon tho considering his appetite and the growths....

Oh well, every day is a blessing. I just wish I could get out of school for even a few months! I feel so trapped in this program!! They just act like their is no easy way to take a break, it is horrible. The program that you just can't get out of w/o losing everything!!:uhoh3:

Specializes in Case Management.

With your brother's hx of drug abuse, I am sure that Dad figured out he may not be in a safe place. He may have had some meds turn up missing. He is much better off with you. Sounds like it won't be for long. Love your Dad and respect his wishes as far as his meds and how he is taking them. He is living on borrowed time now, and it sounds like the pain he is feeling even he cannot discern what pain is physical and what pain is emotional. Just love him, love him as much as possible and give him a good death. He deserves it, right? I lost my Dad 3 years ago and I was not able to come see him as often as I would have liked to. Good luck to you. :nurse:

Hugs to you all. And keep us posted.

Is the SW involved any? Someone for him to talk to and help through this process? Someone for the family to talk to? Especially if you feel like you can't talk to the nurse! Is he Spiritual? Should the Chaplain be involved? The nurse should be addressing those issues as well as the pain!

Specializes in cardiac/education.

Ok, now Dad may not come live with me!!:uhoh3: (this is how my family is)

I am at a crossroads here and hurting like hell. Hospice nurse (she is a really nice lady and DOES talk with us, btw) told my sister yesterday (while I was writing a careplan) that "you know he doesn't have much time left, right?". What does that mean? Then my Dad told everyone he thinks he is going to die in one week and my sister said yesterday he was acting like he was saying "goodbye" to his mother and sisters when they went out for a bit. He is now losing control of his bowels when he is awake. It happened yesterday while the nurse was visiting!!! He was so so so embarassed.:sniff: My poor father! He doesn't know how to deal with any of this! And he won't let any of us care for him intimately yet he refuses an aid!!!:o

I am considering now just begging my Nursing School Director to let me take an "incomplete" in clincals. I remember her saying I could do "make up" clinicals if she gave me an "I" and I would not lose everything. That way, I could go back and finish (to get LPN) and then exit for now. I don't know how I am going to deal with all this. I had to go get put on Lamictal yesterday as the depression I have had for so freaking long doesn't want to go anywhere. We have tried all the AD's, so Lamictal is last resort with the family hx of manic depression...I want out. Actually, I don't want to leave my bedroom. I am afraid it will get worse before it gets better. AND I DO NOT WANT MY DAD TO DIE WITHOUT ME THERE!!! My brother and sister have no job right now, or school, so I am the one who is always "busy" and I hate that right now. I don't want to look back and regret what I did right now. I have been trying to go over there about three times a week or more, but even with that, I feel guilty. 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!!! My husband reminds me how my Dad wants me to be a nurse, blah, blah, but I want to be with him right now!!

His mind is beginning to really go. Not just he forgets what he did with his water, but he thinks people are with us that are not or he calls me by a different name, etc. Guess that is likely the brain tumors. They brang down his meds but he is still incontinent with diarrhea stool and his gait is very poor now. He fell yesteday and had to have my brother help him get up....:crying2: :crying2: Honestly, I feel like I am losing it but I need to stay strong. I can't fall apart. I wasn't doing well BEFORE all this! To a positive end though, I checked out a depression support group this week that I plan to attend next week and I am going to attend a grief support group at my work in a few weeks. I know I am going to need help...

PLEASE HELP ME DECIDE. I HAVE TO DO IT TODAY. I am going to go talk to her, once again, see what my options are. If they tell me I can't get out I am going to cry....

Can any of you make any predictions about the length of his life? What are the "signs" that death is imminent, and how soon can you tell to the extent that you feel comfortable telling the family??

Thank you

Specializes in Med-Surg, ER, ICU, Hospice.

You say your father is "MOST IMPORTANT..." Actually, that is incorrect. You are.

Your father will die and he will die the way he lived.... there is nothing you can do to fix that. The only thing on this planet you have any hope of fixing is you. Everything else is secondary. Your father will die in a huge mess whether you are there or not.

You openly admit the degree of dysfunctionalism in your family, that means you have it too. One of the most important lessons to learn "in recovery" is this: Anyone can give you the disease, but only you can fix it.

Apparently you are the designated "caregiver" in your family system. You are trained to think it is your responsibility to fix everyone else in your family (which is why you are in nursing school by the way... most nurses were the designated caregiver in their family system.. the archetypical nurse is married to an unemployed biker; i.e. someone who needs to be taken care of.)

Anyway, you feel like you have to take care of your father because you were trained to think that. It is not so, but you were trained to think it, so you do. The only way to get out of it is to untrain your thinking pattern. A good way to begin that process would be to go to school and let your family do what they do; i.e. make a mess of things (which will happen anyway whether you are there or not.)

Dying process teaches us how to live… or very often, how NOT to live. In a way, your father is doing you a favor… he is demonstrating how not to live your life. So I would suggest you take it to heart and stop living your life that way; i.e. for someone else.

You say you do not want to look back someday with regrets. Okay… the path you are on now will lead to your looking back and regretting wasting your life trying to fix someone else (who it is impossible for you to fix) while neglecting the only thing you bear responsibility for- YOU.

Specializes in Utilization Management.
You say your father is "MOST IMPORTANT..." Actually, that is incorrect. You are.

Your father will die and he will die the way he lived.... there is nothing you can do to fix that. The only thing on this planet you have any hope of fixing is you. Everything else is secondary. Your father will die in a huge mess whether you are there or not.

You openly admit the degree of dysfunctionalism in your family, that means you have it too. One of the most important lessons to learn "in recovery" is this: Anyone can give you the disease, but only you can fix it.

Apparently you are the designated "caregiver" in your family system. You are trained to think it is your responsibility to fix everyone else in your family (which is why you are in nursing school by the way... most nurses were the designated caregiver in their family system.. the archetypical nurse is married to an unemployed biker; i.e. someone who needs to be taken care of.)

Anyway, you feel like you have to take care of your father because you were trained to think that. It is not so, but you were trained to think it, so you do. The only way to get out of it is to untrain your thinking pattern. A good way to begin that process would be to go to school and let your family do what they do; i.e. make a mess of things (which will happen anyway whether you are there or not.)

Dying process teaches us how to live... or very often, how NOT to live. In a way, your father is doing you a favor... he is demonstrating how not to live your life. So I would suggest you take it to heart and stop living your life that way; i.e. for someone else.

You say you do not want to look back someday with regrets. Okay... the path you are on now will lead to your looking back and regretting wasting your life trying to fix someone else (who it is impossible for you to fix) while neglecting the only thing you bear responsibility for- YOU.

That'd be a good thought, except for one thing--the person she needs to be with right now is dying. He's not trying to pull her into his dysfunction and chaos.

He's dying.

No more chances. No going back. No Incomplete with a chance to make up later.

Althought I feel very strongly that only YOU should make this decision, not us, I vote for you to see your dad now while you can and go back to nursing school in a few days, weeks, months, when he's gone.

Specializes in Case Management.

thrashej,

I agree with Angie O'Plasty. You will regret it if you don't try to see him as much as you are able to. I was very "busy" as well, with my job, my hour commute each way to work, my 4 kids my husband, 3 years ago when my father was dying. My mom would gently remind me that he was not going to be there forever, but it meant a 2 hour drive for me on weekends and my weekends were always very busy. So I put it off, I did call him once in a while, but his mental confusion I think pushed me away more. He was no longer the strong father figure I grew up with. So for the last 3 months of his life which he spent at home in hospice and actively dying, I stayed away.

Then I got the e mail from my mom saying he would be gone within a few hours. I tried to get up there, but I was about 16 hours too late.

I will always regret not going up to say goodbye. If you can afford it financially, you would probably feel better taking some time off and getting more involved in his daily care. Just my 2 cents.

Specializes in Med-Surg, ER, ICU, Hospice.

As I say, most nurses were the designated "caregiver" in their family system so that is their knee-jerk reaction to life.

Also, regarding the question of "How much longer" (will your father live): It is likely he will linger and live longer than seems physiologically possible... based on his learned coping mechanisms. (He already has and that trend will continue.)

It is also interesting that those who support spending more time with dad and less time with school argue that: He is dying. This is the irrevocable end. No it's not. Death does not end life. Dying process prepares us for continued life, not for the cessation of life.

Specializes in Utilization Management.
As I say, most nurses were the designated "caregiver" in their family system so that is their knee-jerk reaction to life.

Also, regarding the question of "How much longer" (will your father live): It is likely he will linger and live longer than seems physiologically possible... based on his learned coping mechanisms. (He already has and that trend will continue.)

It is also interesting that those who support spending more time with dad and less time with school argue that: He is dying. This is the irrevocable end. No it's not. Death does not end life. Dying process prepares us for continued life, not for the cessation of life.

I'm assuming that you're responding to my post.

First of all, if a person's "knee-jerk" reaction is to care for people and about people, I could only wish that reaction on more of us; the world might be a better place.

Second, while it's true that death does not end life, it does end life on this planet, and short of supernatural means, does mean that any earthly relationships are over.

I do not say these things to try to influence what needs to be thrashej's decision, but only to demonstrate that there are other viewpoints besides req_read's on the subject that are equally valid.

Thrash, I pray that you find peace with whatever your decision might be. I realize that it's a difficult one that faces you, and please know that you will have my support whatever you choose.

:icon_hug: :icon_hug:

thrashej,

as angie stated, we can't make the decision for you re: a loa from school.

your instructor told you that you could make it up.

so to me, it's a matter of prioritizing-what is more important at this time?

it's so difficult to assess how close your dad is to leaving this earth.

it does sound as if he's more accepting of his dx, since he's saying his good-byes to different people.

i think it would be a blessing to have his family around him right now, provided all his children can be together cohesively and won't escalate any anxiety he is experiencing. this is a time to pull together and show your unconditional love.

may you find peace.

leslie

All families have there own issues and when someone is dying it can bring out the worst. Don't worry about it, take care of your dad and know that in the end you did what was right no matter what everyone else thinks. I'm dealing with the same thing right now my grandfather is on hospice with lung CA and everyone says all kinds of nasty things about me, but it doesn't matter I'm doing what is in his best interest right now. Wish you the best with you Dad.

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