This will be the last blog post about my Dad. I have not posted about his actual death and I want to tell that story. There were many powerful and meaningful moments that I don’t want to lose. Brains are unreliable, you know. {insider dementia joke…yes, we have those.}
I held a lot of frustration that last week because I do not take kindly to being told “this is it” when it wasn’t. And after spending many years tempering those alarms, I wasn’t going to allow myself to get sucked into them until I felt confident myself that we were indeed at the end.
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Resting, but not yet leaving us
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Having some wine with Dad
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I wasn’t sure what I wanted from this time in the beginning or how I would feel. I did request a few minutes alone for Bryan and I to have with Dad that first night Mom called. I will cherish those 5 minutes of saying goodbye to my Dad with my brother. In that small space of time we became two vulnerable children facing this together.
I didn’t care much for the tracking of vitals because I could hear him breathing and it told me where he was at. I was closely tied to his breath. I could tell when he was stable, when it became erratic and then he would adjusted to the new, slightly declined rhythm. I put my ear to his bony chest and listen to his heart. He had a strong ticker. For his slight weight much below mine, he still was so strong.
His breathing sounded so much like his snoring when I was a child. His snoring was pretty epic actually. After sitting there from midnight to 5AM, he fell into such a rhythm, that when we decided to sleep for a spell, it lulled me to sleep. Just like when I was a kid.
The next morning the hospice nurse was encouraging us to go home and rest and giving us the speech that our loved one would with us no matter what. But I couldn’t budge. There were two reasons I couldn’t. One reason is that deep down, I wanted to be there when he died. I wanted that moment and it was important to me. The other that was going home meant work to me. It meant being “on” with the kids and after being up all night, I was exhausted. I wanted to stay with him because with him was peaceful, with him asked nothing of me, with him allowed me to be his daughter. It was a bubble that I wasn’t ready to leave.
And after holding it all it to be the ever stoic, “mom, chill out” daughter, I cried and told these things to that hospice nurse. And she told me if staying is what I wanted, that is what i should do. Later it was just she and I in the room. And I confessed to her that what I really wanted was to get in bed and curl up with my Dad. And she said, “do it.”
And I did. That whole time sitting in that room seemed to strange to me. Sitting there and watching him. I wanted in that bed. Maybe I was just tired. Maybe I was wanting some sacred, quiet space with my Dad. Maybe I wanted to do what little girls do…snuggle with their Daddy when life is hard. I had four hours with very few interruptions. I would rest, play on my phone, listen to his breathing, listen to his heart, talk to him. It was all just so simple. A nurse came in an offered to take a photo and it has become my favorite with him. She captured what I was feeling in side.
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The little girl with her Daddy.
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I remember how I loathed lots of people in the room. One false alarm and my God, I think there were 8 people in the room – I had to walk out. I hated the chaos. It was like my Dad got lost in it and i couldn’t get to him. And I felt very protective of him.
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When do we get to that door at the end?
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Many people pass when the family is not there. I wanted to be there, but what did Dad want? My Mom, brother and I went left to go get dinner to give him that chance. But he waited. And an hour and a half later, he passed. And it was just how I thought it would be – he would just stop breathing and that would be it. No fanfare, no dramatic ending, no alarms – just the quiet end.
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We toast and give him space..in case he wants it.
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I remember being seated with my brother and two caregivers who were close to him came to see him and were holding his hands. We were chatting when he had a very long apnea. We all paused and looked and waited. He took a breath. We resumed chatting, but then came another long apnea. And we waited. And waited. And waited. I will never forget the caregiver turning to me, tears streaming down her face, saying, “he has no pulse.” I got up and put my ear to his heart. That heart I had checked in on many times that last few days. That strong fast-beating ticker, was silent. That moment I will never forget. His chest was silent and still. It was beating and then it wasn’t. Black and white. 1s and 0s. There and gone.
I walked to the foot of his bed and started chewing on my fingernail. I wanted to be next to him. I asked the caregivers for a moment of privacy for our family. Then I crawled back in that bed, buried my head in his arm and sobbed. I cried for a part of me and a part of my childhood that went with him. And I cried tears I had held for so long. They just came. That moment was so precious to me. It was a sacred space.
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After moving his things the next morning. Don Havel’s room, but he is no longer here.
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For having a slow passing, his was so very peaceful. And being the generous man he was, he gave us all so many beautiful moments. He gave me every moment I secretly wished for. Moments that are mine and mine alone. Moments I will hold sacred and close. Moments between father and daughter. A silent, peaceful goodbye.
Being together was all there was and it was enough. His spirit inside that body was enough for me. I was glad for the time I had to sit with him and experience his peace and his wisdom for the simple beauty of life.
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Returning 4 days later, just me.
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Soon a new name, a new biography will be here
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The cycle of life repeats and this light will comfort and bring peace to another patient and another family.
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He lived beneath such an amazing sky. I have taken this shot many times after a visit.
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And that man held onto his spark until the end. Not everyone who suffers from dementia receives that gift, but we did. No words, but he was full of joy and smiles up until a few months before the end. He walked and walked and walked. He danced. He sang. He patted you on the back. He laughed. For as many ways as his brain could have eroded, I am glad it left his spirit intact and unchanged.
Goodbye Dad. Now I feel you in the peaceful, still moments of life and they are less lonely to me. I feel you in the joy of watching a NOVA. In the freedom of a road trip. You are always with me and have given me so much…up until your last breath. Thank you so much Dad. I love you.
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..and to dust you shall return.
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