Dad now under hospice care- a chronology of what we experience

Finally getting the courage to write about his last days. I hope this helps someone else out there….
Dad passed away at 8:30pm this evening. He was surrounded by his love of 60 yrs and 3 of his 4 children. The last couple of days have been extremely diffiult. I will come back to write about our hospice experience but for now let me tell you how it went for dad

By Friday 10/3, he was sleeping most of the day. He was able to get up once to sit on the recliner with the help of hospice and my mom and then he didn’t move the rest of the time till he went to bed. He continues to take in fluid and eat very little. His urine output is almost none. He went 16 hrs without one yet he’s drinking plenty of fluids.

By Saturday 10/4 he stayed in bed the entire day. He slept most of the day. He ate almost nothing but was still drinking his fluids. However his ouput was nothing. I believe he finally did 500 cc but that was for a period of over 18 hrs. He occasionally opened his eyes and tried talking but his speech was not understandable which frustrated him. When he did say something it was about something no one could understand. We had a priest visit to pray and do last rites and dad was telling the priest something about a baptism in a large church with 500-600 people. He then opened his eyes to me and started talking about Assisi in Italy where St Francis resides. Told me that it would only be $5 more so why not go. He slept on and off then later started getting restless. Through the night he became anxious, agitated and extremely restless. They had him on very small doses of Ativan.
That night he started jerking movements and uncontrollable hand movements. The jerking movements were like when you first start to go to sleep an you have an involuntary jold in your leg which startles you awake. He had these movements the entire night. Even tried pulling at his shirt to take it off. He would also go through periods of moving his hands like he was picking or rubbing his shoulder, neck face or shirt. That really was a bad night. During one of those startling jolts his jolted his legs off the bed and tied moving his upper body. Thank goodness they caught him and straightened him up and put the bars up on the hospital bed.

Sunday 10/5 he was still restless and his breathing became labor. He could not comprehend things around him. A couple of times when the football game was on he would watch the TV and even call a play (the play wasn’t happening but at least he comprehended that he was watching a football game. His condition became increasing worse. He could not comprehend when was being asked. He continued with the restlessness.

Monday 10/6 he continued with the restlessnes and became almost non responsive. By the afternoon he started the “death rattle”. That carred through the night and never went away. He was being treated with Ativan, oxycotin and something to remove the secretions in his mouth. He slept the night better than he had been sleeping. Still has not gotten out of bed. His urine output was a mere 200 cc. And he had at least 3 sodas, water and a boost milkshake.

Tuesday 10/7 the death rattle was very loud the BP varied from normal to low 84/60, his pulse rate about 120 beats/min. After listening to his “rattle” you get used to the cadence or rhythm of his breathing. You could talk to him and know his could hear even though his eyes were closed because he would squeeze your hand to answer. The hospice nurse didn’t believe us when we told her something had changed. This was during shift change and no sooner than the nurses shift that his blood pressure only had one number…the high number. The nurse told us that this is what happens. It was within 30 mins and dad was gone. We left him alone with mom so that she could talk to him and have her time. It was a very emotional time. Dad had 3 of his kids with him and holding him. We told him over and over how much we loved him and that it was ok for him to go. ….that we would all be ok.

Now after not quite 2 months…I suppose we’re ok but it still very hard. It doesn’t seem real that he’s gone. Today would have been mom and dad’s 49th wedding anniversary. We had a mass in his honor today. We all miss him especially mom. She’s yet to be alone. Someone has been staying with her since dad passed. The holiday season is going to be incredibly hard.

I continue to pray for a cure….

Dad passed away Tuesday October 7th. We are all so very sad right now. The viewing and rosary is tomorrow with the mass and funeral on Saturday. My mother is in so much grief that I can’t even describe. I will write about his final days later when it’s less painful. Again my hope is that in describing Dad’s final days someone else will know what to expect. I know that was something that was important to my mom and myself. That fear of the unknown….

God bless all and I so hope and pray that a cure is found soon. I hate this disease.