Struggling with being my own dads Hospice Nurse

[foudini]

My dad was diagnosed with advanced primary liver cancer in June of 2012. He was 80. He had survived end stage liver disease secondary to hep c and cirrhosis about 9 years prior. I live in Utah, he in Southern Ca. He was my best friend and only support. My sister has Alzheimer's at the age of 49. My dad and I spoke a minimum of twice a day, and I listened to him struggle with all of the aspects of liver cancer. A doctor had told him that, without a liver biopsy, they couldn't say it was cancer for sure, even though his AFP was over 10,000 and he had multiple large nodules in his liver, so he never believed he was dying. I was expecting it to look like ESLD, with ascites, jaundice and confusion, but he never developed ascites. He lost some of his bowel control, had multiple visits to the E.D. because he couldn't urinate and his bladder would become so distended that he was suffering severely, but he was confused enough that he didn't recognize that his inability to urinate was causing it. He had a TURP which helped some. He also had bilat 4+ pitting edema to feet and legs, severe jaundice, facial edema, severe confusion and weakness, lack of appetite, atrial flutter and his liver could be palpated in his LLQ.

Anyway, he wanted to be with me more than anything in the world. Wanted to see the mountains, wanted out of Long Beach. I had promised him, 9 years ago, that I would never let him suffer. I went thru months of worry because he was confused and getting lost and couldn't figure out how to use his phone anymore. I packed up my 2 kids, dog and cats and moved to So Cal to take care of him. I planned on staying, but ended up moving back home. I'm a single mom, so this was no easy task.

Okay, now to the part that has me consumed with guilt.

He came to live with me so I could care for him. He would be up in the night confused, fell once and I found him on the floor by the bathroom. His urine was rust colored. He was confused but seemed content. I took him to the mountains and helped him walk down to the lake. He didn't have the physical or mental strength to really enjoy it, but we did it.

On the 3rd night that he was with me, he woke me up complaining of severe epigastric pain. He was on hospice care at that point, but wanted a shot of vodka, first time he'd asked for that in almost 10 years. I gave him one but it didn't relieve the pain. I started him on the prescribed dose of 2.5 mg's Roxanol q4 hours. I gave him the first dose with no relief. Side note...he had stopped eating or drinking coffee the day before and got in bed and didn't get out. Anyway, I gave him more. That didn't help. My dad never, ever complained of pain, so I was scared. I knew he had esophageal varicies, so I was scared that he was going to bleed out or his liver capsule would burst-I was told that a lot of patients with this form of cancer die from catastrophic bleeding events and I didn't want him to die afraid. He fell into a deep sleep, then woke up asking for water. I gave him some, got him up on his elbow, had him turn his head and tilted the straw down towards his tongue. He took a big sip, but when he went to swallow, it all went in his lungs. He turned blue and coughed so hard that he went completely unresponsive. I have never been so scared in my life. I had no one with me...no family or friends. Just me and my dad. I knew at that point, he either coughed so hard he had a stroke or something terrible had happened. I sat by his bedside for the next 20 hours and listened to him moan a soft moan on exhalation, he sounded very wet, I suctioned him when it he needed it, then positioned him on his side. He looked very comfortable but was having trouble breathing. I knew there was no going back at this point, so I gave him lots of Roxanol. I probably gave him 20 mg q4 because I was terrified he'd wake up in pain or worse due to his aspiration. To be honest, i'm not sure what I was doing anymore. He did die peacefully, meaning he never regained any consciousness. He did however, roll onto his back with his eyes wide open and reach out in front of him as if to grasp something, then back to unresponsive for a few hours before he passed away in my arms. His last breaths were small gasps...no air movement. I watched his pulse in his wrist go into a fast arrhythmia, then stop.

I'm coming up on the one year anniversary of his death, and I am struggling with my decision to be his hospice nurse. I wanted his death to be peaceful, with his favorite music playing, and it was, but he aspirated in my care, and I gave him morphine, knowing I was brining the end sooner because it was coming anyway. I'm looking for support because I can't continue to feel like I killed him. I know he was going to die anyway, but I feel like I brought death sooner. Maybe that was a good thing, idk. Was it my decision to make? It is affecting me deeply and profoundly.

Please don't say anything cruel. But I want to know anyone's thoughts on this.

thank you.

[motherof3sons]

You loved him enough to care for him and let him go.....and that is what matters most! The fall and possible aspiration could have happened in a facility. Stop beating your self up.....let the guilt go and hold onto the precious memories you have of your dad.

[HouTx, BSN, MSN, EdD]

Hugs to you ((((((((foudini))))))))

I was primary caretaker to my husband, mother, and older sister during their terminal illnesses (within a span of 4 years). However, upon the very wise advice of a dear friend who had dealt with a similar situation, I opted to have them admitted to hospice rather than attempt to care for them during the final stages. I was able to continue providing care when I was physically and emotionally able to do so, but I was also able to continue to work and maintain a semblance of 'normal' for myself.

It was a horrible experience with many excruciatingly difficult choices to make. Luckily, I worked with a wonderful hospice medical director and had excellent hospice services readily available - both inpatient & home care. I think it was even harder, because I am a nurse and could anticipate/visualize the course of events. Other well-meaning (in most cases) family members added to the burden as I felt that I had to support & reassure them - and they did not understand why I "handed off the care to strangers".

According to the hospice nurses, one of the most difficult aspects of their job is to reassure the family and attempt to decrease their distress when the patient is exhibiting signs of impending death, especially respiratory changes. They have specific care regimens & medication combos that are designed to minimize gurgling, stridor, 'air hunger', etc. - all of which normally occur as death is imminent. It seems as though you are still very disturbed about these events. If so, I would encourage you to talk to a hospice nurse who can help put it into context for you.

Wishing you peace.

[LadyFree28, BSN, LPN, RN]

You loved him enough to care for him and let him go.....and that is what matters most! The fall and possible aspiration could have happened in a facility. Stop beating your self up.....let the guilt go and hold onto the precious memories you have of your dad.

Agree.

Death is never what we expect it to be; know that your father appreciated your care; he was able to die with someone he loved.

((((((((((HUGS)))))))))))

[Esme12, ASN, BSN, RN]

((HUGS)) You gave him what he wanted...to be with you.... I can't imagine a better gift. Talk to a professional if this still bothers you...but I believe you did the only loving thing a daughter could do...love him enough to let him go...((HUGS))

[krisiepoo]

I'm so sorry that you have such guilt about this. You were there for your dad at the end, what an amazing daughter you are.

I think you would do well seeking some professional counseling. Not for any other reason that to work through some of this with a caring professional who can help you move forward

Thank you for loving him enough to care for, and let him go

[smartin13]

You gave your father just what you promised. You did not let him suffer. He could have just as easily fallen or aspirated in a facility. Having you by his side I am sure provided him with great comfort. While we may know what to expect in patients as they have reached the end of their life it seems as all of that knowledge goes out of the window when it is our family. I only hope that I can be as strong as you were if I am put in a similar situation.

As for what you can do now perhaps seeing someone to discuss your feelings. Hospice provides support for family members and perhaps talking to them would give you some peace of mind.

[Mr Sacdiff]

Imagine having a post-mortem conversation with your father. Would he want you to feel guilty? I doubt it. I personally believe medically-assisted suicides should be made legal anyway, so I wouldn't judge you either way. I believe you did the right thing after he aspirated. Oncology nurses struggle with this kind of thing daily. They do not want to feel like they are the ones who "did it", but in reality, it was inevitable. Feel proud of yourself for taking on the responsible and respecting his wishes.

[CapeCodMermaid, RN]

Please stop feeling guilty. You were with him. You made him comfortable. You eased his pain. You need to ease your own conscience. Everything you did was right.

[mom-wife-nurse]

I think you did an amazing thing for your father. You may have brought his death sooner, but probably not. The MOST important thing is that you kept him comfortable!! We can all tell you not to feel guilty but it's easy for us to say as we're not in your shoes. Do you have the option to seek counseling? Hang in there, I think you did everything just right.

[foudini]

Thank you all so much for your kind words. I think nurses have a different perspective on this situation, because we deal with life and death, depending on our chosen area of nursing, which is why i'm reaching out to you all. I have always worked in skilled nursing with an emphasis on hospice care. I've also worked in Home Health/Hospice as well, so I've been with families so many times during the dying process…given the Roxanol, Ativan and Atropine…know all the protocols. I always had a vision of what his death would be like…in a comfy bed, listening to his favorite music, no pain, morphine as needed, all done by me. I was shocked at his aspiration…at that point, I was no longer a nurse. I was a scared daughter, watching her dad choke. After that I just wanted to make sure he died without any pain, and yes, a part of me wanted it to come sooner rather than later. I am grateful that he was with me, and therefore wasn't scared. He could have died or aspirated at home alone. Looking back on it, he was coughing some when he would eat. I didn't even pick up on the fact that he was having difficulty swallowing. Thanks again…it really has helped me.

[nurseprnRN, BSN, RN]

It's important that you are here to reach out for help at the anniversary of his death. This is one reason why hospice services continue for 13 months after the death, because that anniversary is so fraught.

You didn't kill him. You just didn't make him die for longer. He would have aspirated anyway, and had you resolved that, perhaps he would have had that awful ruptured varices event, and that would have been worse. I think you know that, and I hope that hearing it from many other nurses will help you with it. Not enough, though.

I completely concur with the recommendation to contact your local hospice for an appointment to sit down with their counselor, nurse, and perhaps spiritual advisor and talk all this out with them as much as necessary, and it may take more than one visit. Give yourself permission to accept their professional help; even though you have given it to others, you're the family member who needs it now. They are wonderful people and will help you.

{{{foudini}}}