I have been trying to get the emotional energy to write this post today. It is amazing how sitting around not doing much but getting someone water or helping them get up from a chair can wear you out.
Things are still declining fast with my dad. I can’t believe the difference in just the 3 days I have been here. I will touch on the main points.
* He can’t get up and down at all by himself anymore. Two of us always has to be here to help move him. He isn’t heavy anymore. He has lost a lot of weight. But the steroids have taken away all his muscle mass and he doesn’t have the strength to lift himself.
* He is still eating, but there has been a sharp decline in that in just the past 24 hours. He ate a little oatmeal this morning and then had no interest in food even when my mom fed him some puree peaches at 3. He did however come sit with us at the dinner table and eat a little. He is having trouble swallowing and chokes a little on food and water. His water intake is much lower today also.
* He can’t see very well. He reaches for things and totally misses them or grabs something other than what he was aiming for. His eyes are watery now and he stares a lot (when he is awake) through you or at the wall. Last night he sat up in bed and looked around the room like he was seeing something/someone other than my mom and I. My mom asked him who else was in the room with us. It gave me the chills. I hope someone is here with him helping his transition into the next life.
* I think he is in pain sometimes. He moans in his sleep and touches his head. I finally talked my mom into giving him something stronger than Tylenol. We started giving him morphine last night. We also have been having to give him Ativan on a more regular basis as he gets agitated easily.
* We have stopped all medications except his steroid and his anti-seizure meds, and of course the pain meds etc. that I listed above. They even stopped his Coumadin today.
* I think he has moments of lucidness. This morning at the breakfast table he kept telling my sister and me (in his garbled speech) that he was a disappointment. Heartbreaking. We both firmly told him that wasn’t true and that he has been the most amazing father. He told my mom this morning that he thought he was worthless and he was sorry. I think those words have been the hardest so far in all of this. I hate thinking that he would ever have those thoughts cross his mind.
* He still has a catheter and probably will now til the end. It is so much easier for him, and us, not having to get up every 15 minutes to go to the bathroom. He has had prostate problems in the past and is not on his medication for it anymore. The catheter allows his bladder to always be empty which I am sure is a relief for him. He still is using the bathroom for bowel movements, although they have slowed down. My sister had to help my mom with him and my dad was so upset. He just cried. We got him a bedside commode today and hopefully that will help.
* We got a wheelchair for him on Monday and it has been a lifesaver. We also got a hospital bed for him today. We were so afraid he was going to get pressure sores on his legs and bottom from sitting in his chair in the same position all day. The bed we got has an air mattress on it that changes pressure every 5 minutes so he doesn’t have direct pressure on any one spot for very long. He is sleeping comfortably in it right now.
* He has probably slept 23 hours in the last 24.
* We sat down and planned the funeral and I wrote the obituary. We meet with a different funeral home tomorrow to see if they are a little less expensive. I finished the video we are going to show at the funeral. I want to get this all done with now because I know that week is going to be a crazy mad house trying to get everything taken care of.
* His vitals are still pretty good. His oxygen is at 91 and his blood pressure was 108/67 today. No fever, but seems cold to my touch most of the time.
Yesterday I was having a “conversation” with him about ice fishing. I asked him if he thought fish sleep. He just looked at me for a minute and shook his head and laughed and told me I was weird. Funny. My sister reads to him sometimes. Most of the time he just wants quiet. I haven’t been in this much quiet in years. No TV, no radio. Lots of time to think.
My mom is a rock. Always positive. Working like a trooper. My sister should be a nurse. She is up and down with him doing anything that needs to be done. She will stay here to the end. I have to go home on Friday. I have a sick 14-year-old. I will probably come back down on Monday or Tuesday. Sooner if need be.
It’s hard to believe that the end is almost here. My husband I were talking on the drive down here how emotional this year has been. A year ago I was freaking out that my oldest was leaving for the Army in February. He left, my dad was diagnosed a month later. My son came home from the Army because HE was sick and needed surgery 2 days after my dad had his first surgery. He had surgery in April. We got married in October and my dad’s tumors came back with a vengeance in November. If we took one of those “how much stress do you have in your life” tests we would check the top 5 boxes. Thank heavens for Xanax, anti-depressants, and sleeping pills. They are my best friends right now.
I have to say though my parents friends, neighbors and church members have gone above and beyond for them. We have had so much food brought in and so many visitors and phone calls. We feel very loved. Thank you.