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Thread: Missing my Dad and struggling with how he died.

  1. #1
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    Red face Missing my Dad and struggling with how he died.

    Hi everyone, I have been exploring this forum since June 2010, when my Dad, aged 82 was first diagnosed with Non Small Cell Lung Cancer. I was quickly determined that it was stage IV as he also had a small brain met. The tumor was about the size of a large orange located in the upper right lobe with lymph nodes impacted as well. The tumor encased his pulmonary artery as well as the bronchial tube. I can't tell you how helpful this forum has been in giving me info or directing me to sources of info to help my Dad on this journey. I have cried many tears, reading your stories and my heart goes out to you all.
    When he was first diagnosed, he was told that this was inoperable, and chemo was not recommended. It was suggested that he have radiation to his lung tumor and WBR to his brain tumor. Doctors were hoping to shrink the tumors and buy him some more quality time. He was adament that he wanted quality over quantity. He went for 5 treatments of each. At Dad's request the doctor's told him he could expect to live for another 6 months. Radiation went well and I must say that the hospital, doctors etc were the absolute best. I have heard lots of complaints about the Canadian Healthcare system but we saw it at it's best. EVERYONE we dealt with where informative, caring, compassionate and very fast at responding. We were really hoping to have one last good summer with Dad and were prepared to see him start to decline in the fall. This monster of a disease had other ideas! First Dad started to lose weight, then we watched him get weaker in the muscles and very easily tired. Neither of these symptoms were unexpected, we just didn't expect them to happen so quickly. He developed a terrible cough that had to be managed with narcotics. The most devestating symptom was when he started coughing up blood. Not just a little, but a cup or so at a time. These episodes were very scary, for both my Dad and anyone who was with him when it happened. His quality of life was quickly disappearing and the strongest, bravest man I knew was starting to give up. This was becoming just too tough for him and he HATED putting his family through this. As the episodes increased from 1X per week to almost daily occurances, we were fearful to venture to far from home so the doctors decided to try another round of chest radiation to stop the bleeding. He now had renewed hope that his time left would not be struggling with these fearful bleeding episodes. The day he had his first radiation treatment to stop the bleeding was the best day he had in a few weeks. His energy seemed renewed and he even had a great dinner and spent the evening enjoying a family visit. Now comes the tough part.... the part that I can't seem to put behind me.
    Later that evening... he went into another coughing/bleeding episode... this time it wouldn't stop.... the bleeding got worse and worse, I watched the fear in his eyes as he started to choke and I listened to the blood churning and gurgling in his chest. There was blood everywhere..It took about 10 minutes for him to go unconcious... I think that's the best word for it.... his eyes were open, darting all over the place but he wasn't really there anymore... he did not respond to us although he was still breathing an awful gurgling breath. When the ambulance came I had to give them the DNR orders and ask that he only be kept comfortable. Our family then spent the next 2 hours surrounding his hospital bed listening to his final breaths....
    I miss him more than I can say.... He was my Dad, my Friend, my Mentor and the strongest and most loving family man I had ever met. I'm angry because the 6 months I was hoping for was just over 2 months. I have not been able to find much info on these pulmonary bleeds.... very little info on the internet, just a little info on having dark towels handy to minimize the visual impact. Next to nothing on this forum. Somehow, I new it was going to end like this and spent the last month of his life trying to find out how I should deal with this when it happened. Doctors and a palliative nurse told me what to expect so I was as prepared as I could be for this. Now I am left struggling with the aftermath of horrific night. I can't seem to block out the fear in his eyes, nor can I block out the eyes that were darting all over the place when he seemed to move to another plane. He lost his fight in late August, just 2 1/2 months after he was diagnosed. I spent most of that time taking care of him at home and was very tired when he passed, but I will never regret having those last weeks with him. It's been almost a month since he passe and I have not yet been able to sleep very well at night as the last night's flashbacks are haunting me. Can anyone tell me what happened to him when I thought he had passed out. He was there but he wasn't. Any suggestions on putting that night behind me, I know my Dad wouldn't want me to continue this struggle. I am back at work now and doing all the regular things I supposed to do but it feels like I'm just going through the motions. Could the sleepless nights really be Post Tramatic Stress symptoms and if so, how do I make it go away.
    Sorry for the long post.... I mostly just needed to talk about it.
    Last edited by irish; 01-20-2012 at 02:18 AM.
    Irish,
    Caregiver to my Dad, who was diagnosed in June 2010 with Stage 1V NSCLC with single met to brain,
    He sadly lost his battle in August 2010 and we miss his smiling Irish blue eyes terribly.
    My Dad's story:
    http://www.cancerforums.net/threads/...th-how-he-died.

  2. #2
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    Irish,

    I can't tell you how awful I feel for you. Aside from the bleeding part, my mother died in much the same way around two months after diagnosis. The day before she died, she was at her radiation follow up and we were told that the tumor had shrunk enough to reinflate her lung. It has worked well and she had relatively few side effects. While we were there (and the night before) she was having trouble because she was throwing up and could not stop the dry heaves. The doctors finally calmed the gagging mostly and admitted her for an MRI. Because of the gagging, she would have to be sedated for the MRI. The MRI never happened...and, as she was going where your father "went" before he died, all she could do was ask for her MRI. For once lucid moment, she grabbed my hand and then she was gone. She "breathed" all night long as I watched, and then she died. Because her organs were failing, she started to "puff up" and her appearance changed drastically.

    I mention all this because, for the longest time, this was the only picture I could make of her in my head. What you are experiencing is absolutely PTSD. I am seeing a therapist and have been since just after my mom was diagnosed. She died four months ago today...it feels like forever and yesterday at the same time.

    You need to seek some help. Some health insurance plans provide coverage. If yours doesn't, there are counselling services that provide help on a sliding scale based on income. Believe me, it is worth every penny.

    One thing that I found also helped, was going through pictures of my mom as she was. I made a slide show on my computer for the kids, and the happy face can sometimes blot out the dying face. I too, had the expectation that her wish to "make it to Christmas" might be fulfilled. After her radiation, she was finally feeling a little better, although she was slightly "odd", but then suddenly she was gone. I too, wonder where she was as she lay there breathing (it looked like she was struggling but the doctors said she wasn't). I talked to her, and tried to help her not be scared. Be comforted that your Dad wasn't alone, he had you there, even though it didn't seem as though he knew it, I am betting he did. I still see "that face", just not as often.

    Oddly enough, my mom's doctor told me about pulmonary bleed outs the day before she died, and that they do happen. They had just had a patient pass away in the washroom the previous day just that way. He said that it was scary and awful to see but that it was relatively fast and painless. It is just truly devastating that you had to go through that. Please, give yourself a break. It has only been a month. But do get yourself some counselling - it will help. Also, see your family doctor. Explain how you are feeling. Drugging yourself into oblivion won't help (it will just delay things) but sleep is something they can address.

    Have a look at some old pictures and/or home movies, talk to your family about how you are feeling, talk to your doctor and give yourself time. The trauma of those moments is going to delay the grieving process. It will likely be a long haul and I wish you all the best. You are more than welcome to email me if you like. I am not sure where you are in Canada, but I am in London Ontario. I may be able to make some recommendations for counselling.

    Hugs, hope and healing.

    Lori

  3. #3
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    Hi,
    To make a long story short my Dad passed away in a similar way. This was almost a month ago and I still cannot get that image out of my head. I saw him the last 3 hours of his life and it was a very difficult sight. He was also struggling with his breathing and had something whats called the "death rattle". Final moments he just went to sleep and stopped breathing. It is very difficult to get that image out of your head, I am just glad i spent the last hours of his life there next to him. I hope you understand that you did everything you could. Sometimes I struggle with myself thinking that maybe I wasn't with him long enough, maybe i did something wrong. But the reality is that I spent most of my time outside of work, wife and child with him at the hospital or hospice. I feel like i skipped one year of my life during his sickness. I try to occupy myself with everything I did before he was sick. If you have kids, other family members or friends try to spent time with them. Do anything that you like, go shopping, movies or take a vacation if you must. I was thinking about seeing a professional to deal with my dad's death, there is absolutely nothing wrong with that, but I tried doing other things and they seem to help for now. Most important you have to take care of yourself because the truth is if you don't no one will do it for you. I hope this helps you somehow and this is coming from someone that went through something similar. I hope to hear from you at some point, life goes on for you and thinking about the way your dad passed away wont bring him back it will only bring you down. Just be glad you were there with him until the end thats all that matters.

  4. #4
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    Hi Irish,

    I'm so sorry about the loss of your Dad. I'm sure his fight was great and so is your mourning. God be with you and your family as you work through the grief.

    My husband also had a tumor wrapped around his pulmonary artery as his cancer progressed. Hemorrhaging is not something many people are aware of or talk about as the way that we can lose our loved ones. I was keenly aware that this was a distinct possibility, but was spared. I am so sorry this happened and have known several others whose family members passed in this very frightening way. Usually it is very quick, but I dreaded the idea of seeing the panic if this had happened to my husband. I'm so sorry for the images that are staying with you. The best I can tell you is that time does ease most of the pain, in the best of circumstances. It may take more time for these memories to clear for you. Please seek a counselor or therapist to talk to if they continue to plague you.

    I'm angry that the doctors, etc. don't warn certain patients/families of this possibility. I had read the same hospice information where they said to have a lot of dark towels available. For some reason, this way of passing isn't spoken of and maybe it's so people in forums aren't frightened or out of respect for those still fighting. I was contacted, on the side, during my husband's final time by others who had gone through watching their family member hemorrhage. My guess is that it's pretty taboo to discuss. I was taken by surprise by the anxiety that suddenly happened with my husband. I had no clue that this too was a sign that the end was coming and it frightened me. Same thing about a patient who is oxygen deprived being unable to sleep. The brain won't allow it and that's why morphine is needed to ease the panic of struggling to breathe. I don't understand why the doctors don't tell family members some of the things they may expect as signs of being close to losing your loved one. I guess most people have hospice and they figure they will inform them. We didn't have hospice.

    I pray you get through this with God's love and power of healing.

    Sleep? That's another issue that continues to be a problem for me and I guess for others. I'm almost at the three year mark and have made some inroads, but still am plagued by insomnia. I'd be awake at night watching my husband because he too had sleep problems. I knew he'd wake and need something else to help him go back to sleep, so I trained myself to stay up. We blew through every prescription sleeping pill. Now I take Valerian and Melatonin with a Xanax chaser in hopes that I can fall asleep. It's a matter of retraining myself. Give yourself time ---- it's still so early for you in the grieving process. Things are far too fresh in your mind. Time really IS the key.

    Again, my sincerest condolences on your loss. He is with our Heavenly Father now and at peace. Please remember that as you go forward. Whatever happened here, he is fine now.

    Hugs,
    PBJ
    Husband diagnosed with NSCLC Stage IV in 3/2005. Fought & lived over 2 1/2 years with multiple lines of treatment.

    Post describing our journey: http://cancerforums.net/viewtopic.ph...er=asc&start=0

    Left my embrace to live with our Heavenly Father in October of 2007 and now breathes with ease forever. I will miss this gentle, giving soul with the easy smile for the rest of my days, but have faith we will be together again. He's just getting a little break from me!

  5. #5
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    PBJ,

    Thanks for your insights....I suppose you're right in saying that the bleeding topic is somewhat taboo, I can only imagine the fear it would instill in those still fighting this disease. You mentioned that your husband suffered from anxiety attacks that suggest the the end is near... I never knew that, How did you hear about that? Dad also had several nightime anxiety/shortness of breath attacks that scared the daylights out of him.... he told me the morning after that he could not recall ever feeling that scared. He had to stand in front of an open window for some time before it passed. I only wished I had known that it could mean that the end was near. I thought I had a lot more time with him. He still had a couple of things left on his bucket list that we never got to. I guess I kinda expected him to at some point be bedridden, but he got up every morning, showered and dressed himself, made his bed and came down for breakfast. Right up to the day he died. It used to take him about 15 minutes to get everything done but during the last couple of weeks it took him about an hour to come down. He said from the time he was diagnosed that he planned on DWD (Dying with Dignity). That became his motto. The bleeding episodes were a major quality of life issue for him. He never knew that they could turn catastrophic. I didn't have the heart to tell him. I did tell him that I had an injectible drug (midazolam) that I could administer if he found the bleeding episodes too scary but he told me that if would stop the bleeding I could administer.... if not he wanted to stay in control. I am very thankful that I was able to stay calm for him right till the end. I hope he could hear me when he went to his other plane before he died. I believe he did. This forum has been a Godsend for me.... I have watched so many of you struggle with the same issues and questions I had. Thanks for being here!
    Irish,
    Caregiver to my Dad, who was diagnosed in June 2010 with Stage 1V NSCLC with single met to brain,
    He sadly lost his battle in August 2010 and we miss his smiling Irish blue eyes terribly.
    My Dad's story:
    http://www.cancerforums.net/threads/...th-how-he-died.

  6. #6
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    Hi Lori

    Thanks for the slide show idea.... maybe I can fill my head with pictures of a happier time. I'm in Ontario too, about 3 hours away from you. I may follow up on your counselling suggestion if I don't start sleeping better soon. I work for a large company and we have an EAP program that would get me set up for counselling. Thanks for the suggestion. You mentioned that you Mom was a little "odd" after her radiation...what did you mean. Dad was a little different after as well and he developed a weird foot problem... he kept tripping up and had to resort to a cane. Dad's initial radiation to shrink the tumor did not work... but he never knew that, I found out after he passed. Thanks for your ideas... I'll let you know if they work.
    Irish,
    Caregiver to my Dad, who was diagnosed in June 2010 with Stage 1V NSCLC with single met to brain,
    He sadly lost his battle in August 2010 and we miss his smiling Irish blue eyes terribly.
    My Dad's story:
    http://www.cancerforums.net/threads/...th-how-he-died.

  7. #7
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    rs,
    I know how you feel about skipping over a year of your life.... I look back over the summer and wonder what the hell happened to it. They say we had a nice summer this year but so much of my life got put on the back burner after Dad was diagnosed. He became my reason for being. He was always important to me... I talked to him every day but he lived on his own but once he was diagnosed he felt more comfortable with family around so he move in with my husband & I. I am sooo glad I had the summer with him and I will probably share a funny story with you folks when I'm feeling a little less tired. It's about his great adventure persuing "Quality of Life" this summer... damn near killed himself but he had fun! I am sorry you had to watch your Dad struggle at the end of his time. It's good to keep busy now I know.... but sometimes too busy just postpones the inevitable grieving. I'm struggling to find the balance now. I feel very honoured to have been with my Dad as he left this world. He was by my side as I came into this world and I stuck beside him as he left. I know my Mom & sister were waiting for him with open arms.
    Irish,
    Caregiver to my Dad, who was diagnosed in June 2010 with Stage 1V NSCLC with single met to brain,
    He sadly lost his battle in August 2010 and we miss his smiling Irish blue eyes terribly.
    My Dad's story:
    http://www.cancerforums.net/threads/...th-how-he-died.

  8. #8
    Administrator Top User pbj11's Avatar
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    Quote Originally Posted by irish View Post
    PBJ,

    Thanks for your insights....I suppose you're right in saying that the bleeding topic is somewhat taboo, I can only imagine the fear it would instill in those still fighting this disease. You mentioned that your husband suffered from anxiety attacks that suggest the the end is near... I never knew that, How did you hear about that? Dad also had several nightime anxiety/shortness of breath attacks that scared the daylights out of him.... he told me the morning after that he could not recall ever feeling that scared. He had to stand in front of an open window for some time before it passed. I only wished I had known that it could mean that the end was near. I thought I had a lot more time with him. He still had a couple of things left on his bucket list that we never got to. I guess I kinda expected him to at some point be bedridden, but he got up every morning, showered and dressed himself, made his bed and came down for breakfast. Right up to the day he died. It used to take him about 15 minutes to get everything done but during the last couple of weeks it took him about an hour to come down. He said from the time he was diagnosed that he planned on DWD (Dying with Dignity). That became his motto. The bleeding episodes were a major quality of life issue for him. He never knew that they could turn catastrophic. I didn't have the heart to tell him. I did tell him that I had an injectible drug (midazolam) that I could administer if he found the bleeding episodes too scary but he told me that if would stop the bleeding I could administer.... if not he wanted to stay in control. I am very thankful that I was able to stay calm for him right till the end. I hope he could hear me when he went to his other plane before he died. I believe he did. This forum has been a Godsend for me.... I have watched so many of you struggle with the same issues and questions I had. Thanks for being here!
    Hi again,

    Breathing was a big issue for my husband. He'd have times like your Dad, where I'd turn a fan on him to give him the feeling of being a little more in control of his breathing. Most of the time it was due to pleural effusion and would ease after the fluid was drained. Eventually even the draining didn't do a lot to help him as his lungs were so full of infection and cancer. His final night, he started the anxiety and high panic over not being able to breathe. I had to call an ambulance and they put him on 15 liters of oxygen. Heck, the home O2 concentrator only went to five. We found there was only a walnut sized section of one lung that was clear. The doc couldn't believe he was still alive with that little lung function. The panic is eased by morphine. He thrashed about in panic even with the morphine and was ripping off the leads for the monitors as fast as the nurse could attach them. Really out of it. THIS is the kind of anxiety I was referring to that is a sign that the end is soon. Shortly after, he lost consciousness, then his kidneys failed and he passed away about 8 hours after going unconscious.

    I should point out that, although it's not talked about much, bleeding to death is not that common. I happen to have known a few people due to the fact that I've been at this for many years and met hundreds of people. I don't want to frighten other fighters or caregivers that this is something common, when it's not. For those that have this experience, it is very disturbing. I'm actually surprised that your Dad hung on, because they usually pass very quickly.

    Your Dad sounded very much like my husband. Always determined to be self sufficient, even when his routine slowed to a crawl. He walked down the stairs from our bedroom less than 2 hours before falling out of his chair and I had to call the ambulance for help. I had no morphine at home to ease his panicked breathing because it crept up on us so rapidly. He was still taking chemo! We were still fighting!

    God bless and I hope the happy memories start to replace those of his final times soon. Be patient, it's so new for you. (I'm heading toward the third anniversary and have lost time in ways that I can't even explain. For me, it was just yesterday, most of the time. It's getting better, but I still lost another summer. I'm definitely a case of 'do as I say, not what I do.')

    Hugs,
    PBJ
    Husband diagnosed with NSCLC Stage IV in 3/2005. Fought & lived over 2 1/2 years with multiple lines of treatment.

    Post describing our journey: http://cancerforums.net/viewtopic.ph...er=asc&start=0

    Left my embrace to live with our Heavenly Father in October of 2007 and now breathes with ease forever. I will miss this gentle, giving soul with the easy smile for the rest of my days, but have faith we will be together again. He's just getting a little break from me!

  9. #9
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    PBJ
    Thanks for the reply.... you're right about the bleeding being very uncommon.... it happens to only about 6% of the time, most of the 6% can be treated in early stages so that it does not turn catastrophic. I'm not sure why my 6th sense kicked in and made sure that I prepared myself so well for this. Seems like my 6th sense was on overdrive all summer. The week before he passed I asked his doctor if she could give me an updated time frame, at that time we were still working on having another 3-4 months with him... Dad was hoping for another 8-10 months.(He was always the eternal optimist) Somehow I knew we were looking at much less. The doctor agreed and said perhaps a month. I had just decided the week before to take a few weeks of my holiday time and spoke to my boss about taking a leave of absence when my holidays were finished. I am so glad I had that time with him. It was important to me that he not be alone and for some reason I didn't feel right leaving him with anyone else outside of my brothers. My Dad too, needed a fan running all night to help with his breathing... my air conditioning was running full, day and night. The last couple of weeks that he was alive he was taking a morphine syrup that was helping to control the cough, it also helped ease his breathing and at night he took an Ativan to help with the anxiety. These seemed to help somewhat and he was able to sleep a little better. I got pretty good at adjusting the morphine dose to keep him comfortable but alert enough during the day to visit with family or get out of the house for little errands or doctor's visits. He hated being so tired and weak all the time.

    I do have a lot of happy memories of my Dad and I try to cling on to those ones, however the flashbacks of that last night keep popping up when I least expect it. It has been somewhat better since I got active on this forum and not just reading about all of you folks. It's sometimes hard to talk to family as I hate to have them worry about me. Having all of you here makes me feel like a little less alone. When I read about all of you that are still fighting this awful disease, my heart goes out too you. Your strength and courage gives me hope and puts my problems in perspective. God bless you all!!!
    Irish,
    Caregiver to my Dad, who was diagnosed in June 2010 with Stage 1V NSCLC with single met to brain,
    He sadly lost his battle in August 2010 and we miss his smiling Irish blue eyes terribly.
    My Dad's story:
    http://www.cancerforums.net/threads/...th-how-he-died.

  10. #10
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    Thank you for posting about your Dad and I am so sorry you had to go through that. Know that by posting you are helping some of us just starting this journey. My husband was diagnosed in July with lung cancer and has opted for no treatment. He has been battling this monster for 9 years, colon, liver, lung, bladder and now lung cancer again. His oncologist has told us nothing other than he has a tumour in his lung, a nodule near his chest bone and one under the collar bone. When my husband said no further treatment, the oncologist said "well I will see you in three months and we will see how fast it has grown", and that was it. so I am reading this forum a lot as I have no idea what to expect. To look at him, he doesn't look any different but he is extremely tired all the time and exertion leaves him breathless. We see the oncologist again in October and I will have a list of questions. This is the first post I have seen regarding bleeding. How scary for you and for him. I have to believe your Dad has gone to a better place and now it is time for you to really look after yourself. Bless you and I hope life gets a little easier with time.

 

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