Dad update

[Guest Iiris]

Thought I'd let you all know what is going on with my dad these days. Last week we were told he had 24-48 hrs to live. Today we're trying to decide what is the best treatment for him now. He's awake and lucid part of the time and the rest of the family is all for lowering the morphine drip dose to a level where he's more "with it" to see if he can breathe now without it. They want him to a level of consciousness so he can tell us what he'd like done. Continue treatment or stop it. I feel he's more uncomfortable on the lower dose of morphine and have mixed feelings about lowering it. He's pulled out 2 IV's and has tried to get out of bed innumerable times on the lower doses. My dad was a smoker for over 60 years and as a smoker, I know how his craving is affecting him. I tried to explain to my mom that the more awake he is, the more the craving is gnawing at him. She got quite angry at me and said she didn't believe it. Yesterday, he sat up several times and demanded a cigarette however, so they've put his ativan back at full dose and gave him a nicotine patch.

The drs say now that he probably won't last a month so my mom is now hoping for that month and wants him as conscious as possible during that time. He's still receiving the morphine drip, an IV for fluids, a medicine to lower his heart rate and an antibiotic(just in case). The drs have suggested stopping everything except the morphine and my mom is having none of that.

We're seeing a kinder gentler dad then we've ever seen before. He's quite sweet and gives us kisses and tells us he loves us. He's probably said he's sorry more this week then ever in his life before. My mom feels that as long as he can interact with us this way, we should let him as long as possible.

The drs say he's in end stage COPD which is now aggravating his heart. They look for total lung and heart failure soon but everything else is quite strong yet. The lung cancer hasn't even been mentioned or even seems to be an issue any longer now that my dad has refused anymore chemo since the last course made him so sick. He's evidently a fighter and not ready to go yet.

Hospice has been mentioned but he'd be unable to have the morphine drip IV on hospice. The dr told me that the other forms of morphine (patch, liquid and pill) probably wouldn't be as effective at relieving his breathing as the drip is.

It's heartbreaking to see my dad in this state and there's been a bit too much togetherness at his bedside which has led to some disagreements but we're all trying to do the "right thing". I'm home for the week-end and then will go back on Tuesday to stay while my brothers return to work.

Unfortunately, because I voiced my opinion about the lower dose of morphine not keeping him comfortable, now my mom thinks I just want my dad to die so the rest of the family is ignoring anything I say. That is so far from the truth but I don't know how to convince them otherwise. I just want him comfortable. If that means he sleeps alot, then so be it. It's not about us and our wishes - it's about what's best for him.

Thanks for letting me vent.....I appreciate your time and kindness. There's few that I can talk to about this and I guess I needed to after seeing how I've rambled. I'll keep you posted.... Billie

[Kasey]

(((Billie))),

Oh so sorry about all that is happening right now. It is so apparent how much you love your dad and want to do the best thing for him and not see him suffer.

Things become difficult when so many people are voicing opinions. I really have no advice about all that. I just wanted you to know the here is a safe place for YOU to be.

We can listen, sympathize, try to comfort, and support you as you travel this path right now. So my hopes are that your father remain comfortable and you feel the strength of all of us here who support you.

May you remain steadfast in your love and care of you dad at this time.

With much, much caring and support,

Kasey

[Don Wood]

Billie, sorry for this turn of events. All of you are on edge, so there will be "words" but try to overlook them. I am with you -- keep your dad comfortable. I don't understand why Hospice wouldn't give him morphine through an IV -- you might want to check that with them. Blessings. Don

[Patkid]

Honey,

We just want to send you a hug.

Love

Pat and Brian

[LynneH]

Billie,

I am so sorry you are going through this difficult time. Jim's last stay in the hospital lasted 7 days before he passed away. For the most part, he was not able to communicate. I had been the only caregiver for Jim so it was understood that I would make the decisions about morphine/ativan, etc. even though his 2 brothers were at the hospital. I remember going back and forth wondering if I was allowing too much medication and suppressing his ability to communicate?? The nurses helped me understand that he needed the pain relief and his brothers gently reminded me that although I wanted him "with me" so badly, this decision was about remembering what was best for Jim.

Thinking of the sad time you are going through, I think you are very bravely making the best decision for your Dad, as he would for you. Hang in there and know that there is no right and wrong here. You just do the best you can do.

Lynne

[nancy c]

I'm so sorry about your father. My husband died 10 days ago and my concern was his comfort. He did have a morphine iv pump-but he had a port for his chemo so they used that. He was talking up until his last 10 minutes of life. Please make sure your dad is not in pain. No one should live in pain--esp if it's their last few hours or days. Your mother, right now, just can't think straight. She also has a load on her shoulders. Just give her love, and I'm sure your family will do what's best for your father--esp to be peaceful his last hours. I feel your hurt--it is terrible seeing your loved one so ill. God bless, take care, Nancy C

[stand4hope]

Dear Billie,

I'm so sorry. Reading your post took me back to my dad's last days. He, too, died of severe COPD. Morphine is good. It really helps. God bless you, Billie, and all of your family.

Love,

Peggy

[MilliBr1]

Billie I am keeping all of you in my prayers.

[Fall54]

Billie,

I had an operation and was discharged from the hospital ( not cancer related or COPD). I had to be readmitted for pain management and the morphine pump was what I used and it was wonderful to be able to surpress that awful pain. I understand you're concerns and why you dont want his morphine to be lowered, you cant stand to see someone you love suffer. You're Mom is having trouble letting go and wants him to be able to talk with all of you , but I dont think see's the whole picture or cant stand to see the whole picture. It may be denial. It is a very testy time for all of you and you all must remember that you all have one thing in common and that is the love of you're Father and that hurtful things said are taken even harder right now.

Seeing someone so ill is tramatic and it just stresses everyone out to the max. I hope if you're Dad is able to communicate the right questions are asked and then you will all have to live by his words. My heart breaks for you all.

God Bless you all,

Jane

[sharyn]

oh boy to I feel you pain. It is so hard to feel "right" with the decisions you make. We had to make the same decisions with my Dad.... I still to this day pray we did the right thing keeping his morphine drip...I pray for you... with all my heart.

[K and Kids]

Billie,

I am sorry to hear that you are having to deal with all of this ... especially the wrestling of lower dose morphine issues. I hope that your dad can be kept comfortable in what ever way that means for him. You certainly come across as caring for him deeply and only wanting the best for him at this stage of his life. I'm sure he feels that too. Thinking of you.

[Doughnut]

Billie,

I have no experience of what you're going through and no advice to offer. I just wanted to let you know that you and your father are in my thoughts.

Dee

[Guest Iiris]

I came home a few days ago to deal with some family stuff and was planning on going back to the hospital on Tuesday to help my mom and dad since my brothers need to get back to work. I got a call from my mom today while I was sleeping so my daughter spoke to her.

I'm very troubled today because my mom said that I probably shouldn't come back up because I wouldn't be able to handle seeing him in his condition now and she knows I don't agree about his current treatment. I'm in agreement with the drs - she's not. She's angry at the dr who she previously just loved for his caring manner. Basically, she told me not to come back up because she knows I'd fight them on what they're doing to my dad.

My dad hasn't had a bowel movement for over 2 weeks and despite using laxatives and enemas, nothing is working so I guess while I was gone, they've inserted a tube in his nose to empty his bowels. This is agitating him greatly and my mom sat holding his hands for 6 hrs yesterday to prevent him from pulling the tube out. They've increased his morphine again because of his agitation. He's still begging for a cigarette and the dr explained to him that if he smokes just one more, it could kill him.

My mom refuses to even discuss that issue. His body is no longer addicted to nicotine - it's his mind and she says "he just has to get over it" The man has smoked for over 60 years and I can't help but think he wants one last smoke before he goes. We don't think he's in any pain. He becomes agitated when the morphine is lowered but he's never complained of any pain. Actually, he's never complained of anything since his diagnosis in March because he feels this is no one's fault but his own since he smoked and couldn't quit - despite many, many years of trying. The drs want to stop the fluid IV, the heart med and the antibiotic.

She's sworn that all she cared about is my dad's comfort. She insisted earlier that there would be no tubes inserted into his body. I do agree with you who said she's in denial and not ready to let him go. She says she will NOT be responsible for killing him and prefers for the Lord to take him when ready so despite the drs advice, she continues to keep him on as much treatment as possible.

As long as he can speak and tell her he loves her everyday, she wants to hang onto that as long as possible. I totally understand that part of it from her point of view but I can't help but think it's rather selfish at the same time. What is good for us is not important right now.

My main concern is my dad's comfort also but also his quality of life. He's been in the hospital almost 2 weeks now, on a morphine drip at various levels. He's lain there in a morphine fog most of the time but can rouse whenever someone comes to visit. He greets them by name, perhaps shakes their hand and then goes back to sleep. He's unable to give any input about what he wants or doesn't want - except to recently demand a cigarette. He cannot have conversations. He's limited to short phrases or words. His stomach is distended because of his bowel problem and now he has a tube in his nose. He can't eat and rarely drinks anything. All he can think of is that last cigarette and nobody will listen to him about that or take him seriously.

This cannot be the quality of life my dad would want.

I can't help but feel a bit of the pariah who no one wants around. This is really hurting me badly now. I don't want my dad to EVER die but I know he's going to. When they start using terms like terminal and end stage, it's rather hard to deny. But, this isn't any way for my dad to live. He's lived his whole life as a quiet, proud, dignified man. To be reduced to this level is unacceptable to me and I cannot understand how my mom and brothers think they're gonna change the inevitable with these bandaid measures. I can no longer voice my opinion because they think I just want him to die the easy way by keeping him drugged and asleep. My mom always said that if that's the way he could go, she'd be happy. She'd know he wasn't suffering and could let him go in peace. Now, when it's come to that, she's changed her mind.

I don't know whether to ignore her concerns and go be with my dad despite what my mom says or let go now and remember my dad as he was. He gave me a kiss good-bye on Wednesday when I left and told me he loved me. I was able to do the same for him.

What more can I ask for?

I just wish someone would ask my dad if he's happy right now. They can ask him if he's in pain, or if he wants a drink....why doesn't anyone ask him if he's happy this way or if he'd choose something else? And, yes, they're right - if I go back up, I probably could only stay quiet for so long before I had to say something. They're ignoring the quality of life issue and I'd feel the need to remind them sooner or later. I knew it'd be hard to watch my dad die but I never realized I'd have to "fight" the rest of my family on how. And, I guess I'm really not fighting because they're ignoring everything I say. It doesn't seem right to be kept from my Dad but it isn't right what they're doing either.

Thanks for listening...... and for your kindness.

Billie

[Kasey]

OHHHH Billie,

It broke my heart to read your post. I AGREE with all your thoughts about how your dad ought to be treated at this time.

I have NO answers or ideas at this time.....just so much compassion for what you are going through.

Please know that you are in my prayers tonight and in the days to come. Prayers to bring you comfort... and prayers to be bring comfort to your very special Dad.

So many warm and heartfelt ((((hugs)))) from someone who has lost a very, very special dad of her own.

Kasey

[NancyT]

Dear Billie,

I am so sorry to hear your Dad is not doing well. I completely understand how difficult when several family members are all trying to do what is best and I am sure your Dad is aware of all that you do for him. Take care,

NancyT

[sharyn]

Billie,

My gut feeling is GO TO YOUR DAD NOW... I can't explain why I feel so strongly... except that from what you have told us in the past, this is not what Dad would have wanted and you must go fight for him. Does he have a living will? What if you went and asked him... Daddy are you ready to die? and he said YES.... maybe your mom needs to hear this... I don't know... I feel like I am rambling, but one thing I do know is that HE NEEDS YOU... Gather up all your strength and courage and do this for your Daddy... Let the chips fall where they may... I will be praying for you... Godspeed Love, Sharon

[Kel M]

I just wanted to let you know that you are in my thoughts and prayers. These are difficult times for you and your family and I sympathize with you.

Perhaps a family discussion is in order with a neutral third party present - staff psychologist or medical department head. I think some of the issues that you've raised need to be aired to prevent long-term resentments from developing. I've seen this method used where my Mom was treated (not us specifically - Mom had a living will and clear guidelines) and it helped families with differing opinions cope with what was to come next.

I also think that if you feel you need to be by your Dad - you just need to do it! Your Mom is hurting right now and she's trying to control the situation to manage her own pain - and is hurting you at the same time. You have a right to be present and to be treated respectfully.

My best,

Kel

[Guest Iiris]

Yes, my dad has a living will. That's what I find so strange about the whole situation. My mom's ignoring the living will except to give instructions that when/if his heart stops, they will not do anything to revive him - and I wouldn't bet she won't ignore that too if/when the time comes.

She wants him as awake as possible until he goes naturally - and wants to keep the meds/etc going till then. To her, increasing the morphine until he's sleeping and not suffering is reprehensible and the same as "killing" him. The same goes for stopping the meds, any nutrition, fluids, etc and doing nothing but wait for him to die. She won't do it. I don't know which is right either but I see the fear and pain in my dad's eyes and know he's suffering while he's awake. Maybe not from physical pain, but I know this is not the way my dad wants to live.

And, yes, I made up my mind last night....I'm going back to the hospital as planned tomorrow. I will not be driven away from my dad in his last moments. I have just as much right to be there as the rest of the family. I can't let him think I've abandoned him or don't care. I won't be confrontational but if the situation arises, I'll gently remind my mom about my dad's quality of life and ask her if this is truly how she thinks my dad wants to spend his last days.

Thanks again to all of you for your kindess and support. It means more then you know.

Billie

[stand4hope]

Dear Billie,

I already responded once, but I've read your new posts and I just have to tell you how much I feel your pain. I swear, I could almost have signed Peggy to the bottom of your posts as far as describing your dad's condition, including the distended belly, no bowel movements, etc. It was just AWFUL for my dad. He also had a Living Will.

The only difference in our stories is that the nursing home was doing what your mom is doing. The other thing, though, was I was the one who was the appointed health care representative, I was in control, and I finally found a way to get him out of there where he could be comfortable and die comfortably.

I wish I could help so much. I wish I could hold your mom's hand and explain to her that I just don't believe that all the tubes and all that stuff is God's way at this point. All the tubes and everything are necessary to a point, but once that point is crossed, they aren't helping, and the patient is miserable from the treatment that isn't helping and will never help - that's enough.

I know some disagree, and that's ok. It really is. But the fact remains that he has a Living Will with his wishes made known. Does the hospital/doctor have a copy of that Living Will? Perhaps they can look into some way to enforce the Living Will without you having to create more stress in your family relationships.

Poor Billie, I just can't tell you how much I feel your pain.

Love and prayers,

Peggy

[Doughnut]

Billie,

I just wanted to say that I too felt you should be with your Dad. I'm so glad you decided to go and I'm so sorry about the fight with your family. I can't offer you any concrete advice because i've just never been there.

Dee

[shineladysue]

Billie,

Wish I could be there to give you a hug. I don't know what else to offer. Please know that you , your Dad and your family are in my prayers at this very painful and difficult time.

Love and Prayers,

Sue

[bunny]

I am praying for strength and clarity for you and your mom and peace for your dad. I'm so sorry you're going through all of this.

xoxo

bunny

[Fall54]

Dear Billie,

If you're Dad has a living will the hospital should also have one on file. If it is not the hospital that you're Father had it drawn up at, find out where it is and get it sent to the hospital he is in now. Those are his wishes and were made when he was of sound mind and body and have to be respected by the hospital no matter what you're Mom wants. I hate to say this but this is you're Father's death. No one has the right to have any say over his wishes.

I am so glad you have decided to go there and make you're presence made to you're Father. If you hadent , it would have weighed on you for a very long time and as you say you want you're Dad to see you there and caring too.

My heart just aches for you as it is hard enough to lose someone you love without all this going on too.

You're Family are all in my prayers.

God Bless you all,

Jane