Dad succumbed to blood cancer, and I can't stop replaying his last moments.

[sunflowers22]

Hello everyone,

My father passed away of acute myeloid leukemia on March 2 at about 5pm, and is at peace. He relapsed in October and chose not to seek treatment, only transfusions of blood and platelets twice weekly to prolong his life a little bit.

Dad initially was insistent on remaining at home until his passing, which we assumed wouldn't be too big of an issue. About a week and a half ago, his pain level skyrocketed and became agonizing, unbearable. We weren't yet on hospice, as he was still receiving blood and/or platelets twice weekly, so no one could administer intravenous pain meds at home for him. He couldn't move, so an ambulance took him to the hospital where his pain was brought under control. I'm going to write a bit below about his decline, in detail, so if you could be sensitive to such information, perhaps you may want to not read further. I don't want to upset or trigger anyone.

In two days time, his health had declined further still, and he told us he was okay dying at the hospital and not being at home, which was a relief because we wouldn't have been able to handle things at home. But the hospital couldn't allow him to die there, as they aren't a hospice facility and, I assume, needed his room in the oncology ward for patients seeking treatment. At this point he was a bit "out of it", in and out of sleep and very much in a daze, partially from the pain med and partially because of the active dying process, i'd assume. But, he was still able to joke a bit with family and visitors which was nice.

The doctor/staff began to suggest hospice to us, and recommended a really nice facility just 3/4 of a mile up the road, which his insurance covered completely. The pavilion has only seven bedrooms, each patient receiving his/her own room, and is designed to feel more like a home than a hospital. We told dad that they were going to move him to a nicer, homier room right up the road in a different building, and he was okay with that. The first night we arrived, he was talking a bit, able to give thank-yous/I love yous to staff and family, respectively. The next day, he slept soundly nearly all day, and would wake up and recognize we were there with him, but would not speak, beyond grunts that would indicate a desire for a sip of water, etc. The following day when we arrived, his breathing pattern had changed and there was a very obvious decline in his overall condition. He was no longer speaking, no longer able to hold his mouth shut, and blood had accumulated in his mouth and throat. He had apparently looked right at my mom in the morning, in such a way that suggested he understood who she was and that she was there with him, but he was unresponsive to speech. His eyes closed for a while, and then they cracked open with a glossy look. I asked the nurse whether or not he was awake (as his breathing sounded much like snoring, but wasn't), and she said she couldn't be 100% sure, but she didn't think so. The nurse explained the changes in his movements and breathing etc. and how it was all normal, and more upsetting to us than to him. She said he was breathing just fine and resting, and told us not to be alarmed by the noise. He had a slight fever, so she gave him a tylenol patch on his stomach to bring it down. The nurse asked us how long we thought he had to live, and we told her that the hospital had told us maybe two weeks (as he had only just stopped getting blood/platelets a few days prior). She gently told us that he did not have two weeks, rather about 5 days to a week at the most.

His hospice facility was very homey, equipped with a living room and kitchen setting for families/friends/visitors, as well as chairs outside of each room for guests to relax outside of the resident's room. Nurses checked on the residents frequently, and not twenty minutes after our aforementioned conversation his nurse popped out of his room to the area where we were sitting and hurriedly told us that we needed to come in quickly at that very moment, because my dad was taking his last breaths. 

I can't explain what that moment was like. We entered the room and his body had stopped heaving from the heavy breathing, and he was still and calm. The nurse had told us earlier that although he couldn't speak, the hearing sense of the dying almost always stays keen, and often sticks around until the very, very end. So through sobs, we spoke to him and told him we were right by his side and that it was okay to let go, and that we love him.

After he was gone, I sat with him for nearly an hour and told him everything I wanted to say. It felt good, but it was hard to leave his room once I was through. His hands grew cold, and I put a blanket over his chest and arms.

I don't entirely know where i'm going with this. My mom and I are doing okay, but I have moments where I can't stop replaying his last hours and especially his last minute or so in my mind. It was so hard, watching him in that state. It was hard sitting by him as he stopped breathing.

How can I get this image out of my mind and focus on the good? Has anyone else dealt with a similar situation? I think i'm just writing this to vent a little bit. 

Best wishes to all,

M

[nuvar]

My condolences. I've been through this and such moments about my mum keep rewinding in my mind often. It has been 6 months and wounds are still raw but people tell me to get on but it's tough as my story was written in the other thread. The way she went was probably very much different from most people here. She suffered utterly, terribly and violently. I cant bring myself to forgive or get over the guilt. I dont want to digress to my own problems.

Let me just put it simply - the problem with thoughts is that the harder you try not to think or to ignore them, the higher the likelihood of them surfacing frequently. The frequency might get less as time passes but you will still think of it from time to time.

The only way is to let time pass and get focused on other activities. The scars would remain though

Of course some say therapies help so you might want to visit a professional.. like a psychotherapist or psychiatrist and ask for recommendations.

[Nicole-my grief journey]

I am so sorry for the loss of your Dad and the heartache your going through. I think it’s so brave to reach out and share the details of what you experienced and are going through. I comend everyone on the forumn that does because it’s not easy. I truly believe that in sharing, it will help you tranform your grief. Being honest with others about what I feel and can listen without trying to gloss over what has occured is helping me. I share the details with only a few that I think can handle it, or have gone through similiar.  You are not alone, I too have had circling thoughts about the intense details of the moments with my moms cancer, losing her and the moments before and after she passed. Same with the loss of my siblings. I’m not a professional in any way, but in my personal experience, the circling lasted for some time and still pops up, just not as much. Everyone says it takes time and although that phrase frustrates me during my hardest times with my grief...I know it is true and have had to just let myself feel the deep grief and know that’s ok. I can’t skip it and won’t ignore it. I did that with my first really hard loss and found myself in deep depression and it then manifested physically. So, I made a promise to myself with this loss that I would get help from a therapist right away and be true to myself and honor the loss, as to cope and learn tools to cope. I feel I can alsoe speak freely in therapy and we did some trauma work. The trauma work knocked me on my knees, but in the long term it was the right step for me because I feel more free, that I won’t always be stuck in the quicksand that I feel. I’m at the 7th month mark on losing my mom. I know that therapy has helped me a lot to deal with it (meaning the replay that my brain seems to want to torture me with). I believe in positive affirmations to rewire my thinking, like telling myself I am safe and it’s ok (I tell myself this over and over again because the more I can do that, the more my mind assimilates to that, instead of constant anxiety about it). I think replaying things is completely par for the course in losing such a keystone figure in your life. It’s a profound loss that you are going through. Also, my cortisol levels and fight/ flight and shock remained activated for a while right after. I was hyper vigilant during that time. It kept me going and completing tasks and the worry for my family kept me from taking better care of myself. I say that incase you are experiencing that too, so you know you’re not the only one and it will change. Once it wore off, I really started to grieve, the tears have flowed for months and that’s ok. We all need that release. You will find you are stronger than you ever thought possible. Try and only focus on the things right in front of you in the moment. Like getting out of bed, eating something and showering and resting when you need to. I take walks and try to point out one pretty thing a day. When those thoughts try to hijack me (because they certainly do), I acknowledge the thought, shed some tears and then tell myself my mom is at peace now and I won’t feel this way forever. I then try and bring myself back to the present by transforming the thought to something else (like how your dad made a joke or was able to try and comfort you while he was going through things), or I change it by making a call to someone I trust when I can’t get rid of the circling and I ask them to tell me about their day to pull myself out of it. Lastly, another tool I use, is that I write the circling thought down on paper and then tear it up and toss it in the bin as a symbol that I am letting it go. It takes doing it more than once. I hope that all makes sense. I know it’s all so overwhelming. 

Sending you thoughts of peace. Keep sharing.

hugs,

Nicole

[Fmf]

On 3/4/2019 at 4:54 PM, sunflowers22 said:

How can I get this image out of my mind and focus on the good? Has anyone else dealt with a similar situation? I think i'm just writing this to vent a little bit. 

I am so sorry for your loss.  My dad and husband died with 24 hours of each other a little over a month ago.  I was not with my dad (but my mom and brother were) because I was with my husband who was  in the ICU in a different hospital. I, along with my teenage daughters were with my husband when he passed.  I have tried to not replay his last moments although they were peaceful, but instead have made a conscious choice to choose one  happy memory each day to focus on.  When I am upset I call on that image to remember them by.