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September 5, 2016

So, I have been writing this post in my head all week…but I have not figured out a good way to begin.  I guess I just have to dive right in the deep end, even though it isn’t at all the way I want to begin.

A year ago, today, my dad passed away.

My dad had Lewie Body Dementia.  He was having trouble with his Parkinson’s symptoms more so than the dementia, however, he definitely had his moments when he was off his rocker and in a world of his own.  He was still lucid though.  He still knew who everybody was and could talk about current events and could remember things that were happening.

Every day since Tuesday I have been trying to remember what happened on that day.  A week of anniversaries.

I didn’t write at all during this time last year.  Everything was just too much.  And now, I regret that .  I wish I had recorded that last conversation.  I wish I could remember the exact words.  Here is what I can remember:

8/30:  I get the call that my dad is sick, and I go to my parents’ apartment.  It is decided that we will call the ambulance and take him to the closest hospital.  He is admitted.  We have no diagnosis.

8/31:  I go to work.  It is the second week of the semester.  After work I speed to the hospital and hang out with my mom and sister.  My dad is talkative and accuses me of not voting for him.  I tell him that of course I voted for him and he says, “Well, then I mistreated you.”  I tell him to be nice.  We also have a normal conversation, but I can’t remember it at all.  Still no diagnosis.

9/1:  I go to work.  Diagnosis:  Congestive heart failure.  He had a valve replaced with a bovine valve several years before and now it is leaking.  He wouldn’t understand surgery, and open heart surgery is invasive and painful.  We opt not to do surgery.  We decide hospice is the best choice.  After work, I speed home to bake cookies.  It is the first day of school, and it is my tradition for my kids.  I race to the hospital  when I am done and hang out with my mom and sister.  I stay after they leave and Jeff joins me.  We hang out with my dad.  He is really talkative.  He isn’t really making sense, but he is entertaining.  There is something about hamburgers running a machine?  It was a fun night.  I am so grateful for it.

9/2:  I go to work.  I race to the hospital after work.  He is moved to N.C. Little Hospice in time for dinner.  I get there way before he does, and the nurses show me around.  I ask what the average stay is…they answer:  three days.  I am shocked.  I assume we have weeks to go on this journey.  I have class, so I meet him there and make sure he is comfortable and dash back home to get on the computer for class.  My sister stays with him and eats dinner with him.  I know she is grateful for this time.  She encouraged him to have some mashed potatoes, “I don’t care for potatoes,” he said.

He shocks the hospice nurses in the middle of the night by getting out of his bed and asking for them to show him to the bathroom.  We still don’t know how he got out.  The bed rails were up, and his mobility was limited.

9/3:  I go to work.  I speed to N.C. Little.  I get there to find my dad in a very different state than I had left him. He is awake -ish, and dozing.  He is trying to talk but very hard to understand.  My kids and Jeff are coming to eat dinner.  I thought we would be eating with him, but it is obvious that he won’t be eating.  I can’t remember if he had been awake in the morning when my mom arrived, or if he had slept most of the day.  I think he was out of it most of the day, though.  I remember thinking that it must be because he had been up at night.  Denial is strong.

My family still comes to eat.  We sit with my dad, and then the kids go into the basement to play a little.  My dad tries to talk a little.  He definitely perks up when the kids are in the room, but he is still hard to understand and still looks like he is struggling.  We decide to go get some food, and Sarah hangs back.  She tells me she wants some time alone with Grandpa.  The rest of us go get our food.  Once everyone is settled, I go to check on Sarah.  She leaves his room and bursts into tears.  He had his “moment of clarity” with her.  He sat up and asked her if she would be alright without him.  He told her he was leaving soon, maybe on Saturday [which was accurate].  He was going to see his mother and his Grandpa Chris.  He was going to read books when he got there.  Sarah was a wreck.  After several conversations, she was grateful that he told her.

9/4:  I go to work.  I speed to N.C. Little.  I get there to see a sleeping father.  He doesn’t wake up while I am there.  I sit and talk to him, but I can’t remember what I said.  I have dinner plans with my in-laws.  They have no idea what is going on, and I don’t really want to tell them.  It is too close.  It is too hard.  It is too much.  I check with the nurses to see if it is safe to leave.  I don’t want my dad to die alone.  They assure me it is fine, and they have my cell number if anything changes.  I go to dinner and pretend to be normal.

Jeff comes back to N.C. Little with me.  We find a nurse sitting with my dad.  She had been sitting with him since I left.  She knew I didn’t want him to be alone.  I am awed.  So grateful.  We sit with my dad until 10:00-ish.  Jeff leaves to go home.  I stay for another hour.  I don’t want to leave.  The nurses come in to ask if I am sleeping there.  I show my ambivalence and reluctance.  They tell me to go home.  They will watch him.  They will call me if anything changes.  I am grateful.  I want to sleep in my bed, they helped illeviate my guilt.

9/5:  I get up early and pack my grading.  I am at N.C. Little around 7:00-ish.  My dad’s breathing is awful.  It sounds like he is drowning.  I am upset.  I sit with him for several hours, talking and grading, but mostly not grading.  The nurses come in late morning to give him a bath.  I am weepy, and the nurse hugs me.  I tell them how awful it is to witness him drowning, and they quickly correct me.  The breathing is not because his lungs are filling with fluid (congestive heart failure) but it is the “death rattle.”  This is oddly reassuring to me.  I thought he was struggling, but evidently this even occurs with people who are concious that are approaching death.  The nurse tells me she has asked patients if the “death rattle” bothers them and they have said no.  This helps my composure.  My mom arrives.  We sit with him.  A therapy dog comes to visit.  The dog is disinterested.  The owner says something like “Dogs can tell when there isn’t any response.”  My sister arrives.  We decide to eat lunch.  The social worker comes at lunch time and gives me books about death to give to my kids.  We chat and linger in the living room.  Finally I decide I need to go back in to my dad’s room.

The rest I will save for my notebook.  My mom and sister and I were all there when my dad passed away.  I am so grateful that I was there.


I really can’t believe it has been a year.

  1. September 6, 2016 1:26 pm

    I can’t believe it’s been a year either. Time is weird. And so is grief. The other day I realized that this year it will be 20 years since my dad died. Unfathomable. It’s so good that you wrote all this down now…it will get more and more fragmented as time goes by and having this record will be comforting if saddening. Hugs to you, big ones.

  2. September 6, 2016 9:10 pm

    I will take those hugs. It is really surreal thinking about this. It is like a movie. I am glad I wrote it down too. Twenty years for you? Good lord, it must have been so awful to lose your dad so young. I will give those big hugs right back to you.

    • September 13, 2016 12:21 pm

      He was 56, and he was asking for it: diabetic and alcoholic and way way way overweight. Still, it makes me really sad that he never got to meet my kids.

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