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Hi everyone. Thanks for all your kind wishes and thoughts. I really need them right now. Suzy 3 & Ellen, I feel your pain. I really have no idea how to go on right now, it hurts so badly to lose someone you truly, dearly love. I would like to tell everyone about my dad's final week. I think it is good for others (it was for me) to know about other people's experiences. Am I wrong?

My father was diagnosed on June 6, 2001. He deteriorated extremely quickly from then. He was able to walk and function as normal (except for his pain in the lower abdomen)on that day. In two weeks he was almost completely housebound, as he was unable to walk further than 30 steps without becoming extremely tired. And the doctor first prescribed Vicodin - which did nothing for his pain. My father isn't a complainer at all, and he never let on how severe his pain was. It was always around a 4 or 5 on the 0 to 10 scale. (4 or 5 being moderate). The doctor then prescribed Oramorph (15mg) and Roxanol. My father took one Oramorph-- took his pain away but knocked him out for about 18 hours, so he didn't take anymore of that. He did not want to take the Roxanol then, because he was too afraid it would do the same thing. In the meantime, he started eating less and less. I got him some Glucerna to drink to help put some meat on his bones. The doctor prescribed some Marinol for him to help with his appetite, but it did not help at all. After that, hospice set up shop and prescribed more meds. Naproxen, Trazedone, Serax, Megace, various laxatives and stool softeners. In addition, he was already on several medications such as Lisinopril, Tolinase, Atenol, Glucophage, Prozac (for his down mood) and Detrol for his diabetes, hypertension and other problems. He was taking so many meds that my mom refused to give him the new meds because she thought it would kill him to have so many. He still couldn't eat and the pain medication stopped working as effectively so then he was put on Decadron and Dilaudid, in the hopes it would alleviate some pain and stimulate appetite. In the meantime, he kept getting more tired and more tired. He was unable to walk the 20 steps from the bedroom to the living room without a walker. He started falling when he got up because he was too weak to move. Then he was unable to walk period, and we used the wheelchair to get him from the bedroom to the living room. He stopped reading (he was an avid book reader). He said that reading didn't interest him anymore. He only ate a small bowl of cereal in the morning and some noodles and a spoonful of broth in the evening. He stopped even drinking the Glucerna supplement. And he started getting really 'confused'. He kept forgetting where he was, where he lived and what he was doing. This all occurred within six weeks. His last week (starting Monday) started like all the others. He woke up and I took him to the living room. Except he was very weak and ate nothing, just some sips of juice and water. He didn't even want to watch tv (he loved to watch baseball). That is when it really really hit me - Daddy is really really sick and he won't get better. He went back to the bed after 15 minutes on the sofa. He stayed in mostly in bed until Thursday morning (the nurse had catherized him on Wednesday)about four AM, he forgot he had the catheter in and he got up to go to the bathroom (forgetting he was too weak to get up) and he fell and bumped his head on his night table. He was okay -- he cut his head, and it didn't look like he had a concussion, but I knew he wouldn't have known the day of the week or time of day, so I couldn't gauge that. I watched him carefully all day that day (Thursday) and he pretty much slept most of the day. Thursday evening, however, he must have disturbed the bandage on his head, and it bled all over the pillow. We took him to the ER (on advice from the on-call hospice nurse) about 6:30 - 7pm and finally got home at 2AM. Daddy was so tired from sitting in the wheelchair for 5 hours and in the rush to the ER, no one brought him any pain meds. Daddy never once said anything about having pain. After that, he just slept. He whispered to me 'I'm so tired, I'm so tired' and slept all morning Friday. The nurse came by Friday afternoon and checked his blood pressure - she couldn't find a pulse. She said people do not last more than 3 days without a blood pressure. I was so scared and panicked then. My sister, mother and I stayed up round the clock, turning Daddy every 2-3 hours, administering his pain med. The nurse could tell he was in pain, so we got him Duralgesic (sp?) patches and administered Dilaudid every 3-4 hours until the patch started working. Pretty soon I started giving him Dilaudid every hour. It makes me wonder if Daddy had always been in pain and he just never said. We were afraid he could go at anytime...he couldn't move any longer, he didn't speak anymore, he couldn't even swallow. I could see him trying to move, trying to talk, but he just couldn't. It was such agony to see him like that. I kept talking to him, because I knew he could hear me. He went to sleep and was kind of sort of groggy all day Saturday. He opened his eyes a little (tried) and we kept telling him how much we loved him. The nurse came by Saturday afternoon (at 3:30PM). She checked his oxygen level and said that he probably wouldn't go in the next 3-5 hours, because he was still getting 89-91% oxygen level. I went to my home about 5:15pm (I live around the corner) to shower and take a quick nap before coming back (around 7pm). I fell asleep (my mother told me later that my sister and herself - who were the only ones home - fell asleep about the same time). My mother woke up and checked on my dad and he had passed sometime between 5pm and 6pm. I think he waited for all of us to rest, as we had no sleep or rest for quite some time. I would not have gone home though, if I hadn't really thought he would have been gone in that short of time. I feel very very bad about that. I had been my dad's day caregiver since his diagnosis date (my mom at night). I don't even remember what life was like before pc. I am only glad that Daddy is not suffering anymore. I loved him so very much, only now I discover that I was the only one who really knew him. I will miss him so so much. The funeral is on Friday, so I have to hold up at least until then. I think he had this cancer for a long time. He was a robust 210lbs a year and a half ago and about 80-90lbs when he left us. This cancer is so evil and horrible. I know most of it is very general, but I needed to get this out.

I hope this is not too much information, I wanted to share this with everyone who wanted more information, as I did when we were trying to figure out what to expect.

Posted 08/27/2001 03:52 pm by Hanh
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