Things have slowed down for dad over the past week or so. He’s been doing amazingly well for someone in his situation. I really don’t understand what it's suppose to be like for someone who has the type of cancer that my dad has. He doesn’t seem to be in pain, he only has discomfort in the form of pressure in his lower back. I guess that is pain… His vitals are always good, and they are almost always exactly the same from week to week. He is upbeat most of the time. He is able to carry on conversations; his cognitive abilities seem to be really good. He gets confused with days, but that would be for anyone lying in a bed for 2 months. So I’m just befuzzled… I try to look at it from a logical perspective, but it there is a very strong spiritual side to this and that has made all the difference. I realize that the doctor told dad that he only had a few weeks left, and that was December 9th. It’s been 7 weeks now, and I’m not sure where we’re at anymore with this.
I went over to dad’s Friday morning around 7:40 to specifically help mom change his Ileostomy bag. When I got there he was sitting up in his bed still waking up. He has had problems with his eyes being really dry and on a few occasions he’s struggled with opening them upon first waking up. We put a humidifier in the living room for him and that has made all the difference. I spoke with dad for a few minutes and asked him how he slept. He said he slept well. He only had to wake a few times through the night to release air pressure from his bag. That’s been an ongoing pain for him, but we’ve tried everything and nothing works. They make vented bags, but those are mainly for colostomies not Ileostomies.
As we readied ourselves for the bag change out I took inventory to make sure we had everything we needed. Wafer, replacement bag, adhesive paste, stoma sizing chart, scissors, bandages, surgical tape, several wash cloths, soap, gloves, basin of hot water, towel, hair dryer, and mom, fully awake and prepared… The last time we did this mom put the adhesive paste on the wrong side of the wafer... His bag was full, so I had to empty that first. A full bag first thing in the morning is a very foul smelling thing. When you have to stand over it and make sure it pours into a hand held quart bucket you get the full effect of the smell and that is what makes it so bad. I dread that the most of all. So we worked through the entire process and after 30 minutes dad had a new Ileostomy bag.
Dad hadn’t planned on taking a sponge bath, but he hadn’t had one in a day or so and I convinced him he would feel better. So mom went and did her morning devotions and I took care of dad. While I was helping dad with his sponge bath he made general observations on his body. Imagine being able to see every tendon, and every bone silhouette in your body. Imagine, instead of having round beefy thighs, you have straight bones with heavy ropey tendon stretching out and down towards the knee. You have pits and pockets between the tendon and bone and once you get past the knee you have a spindle with a small protrusion that is your calves. Then beyond that is just straight bone then foot. He is just overwhelmed at the condition he is in. Too make him feel better I softly commented to him that his deterioration is just part of the process and it is ok. I told him that he isn’t defined by his body, that he is defined by his spirit, by his voice, by his being and I didn’t “see” his body, I just saw “dad”. I can’t imagine what it must be like to have a body that is so alien though. I seem to have become numb to that aspect of his illness. Because of that I can lovingly take care of him with a more controlled gentle presence. After I gave dad a good rubdown with skin lotion, and rubbed ointment on his back to prevent bedsores, I helped him get dressed and then changed the sheets. Once he was all together and ready for his day to proceed I made him his usual pancake and coffee syrup with a very small glass of milk.
I don’t want the idea to settle in that dad has become an invalid, that’s not the case. He just can’t do certain things that require him to lift his body. He still has his voice, which may not be the stern voice that I grew up knowing, but it is a voice that is very much understandable and very capable of correcting when needed.
Mom isn’t as anxious as she was before, “before” being when grandma was still with us in the nursing home. She seems to be handling things with dad better. I was telling my sister just yesterday how dad being here for as long as he has in his current condition has helped us, or at least helped me, accept the inevitable. I would like to think that death could be as tolerable in the future when it comes to other people I love. I think if dad would have died on the operating table back in November life would have been a twisted mass of pain and misunderstanding.
