(Ed getting kisses from pet dog, Charlie)
March has brought change. The time has changed...it now stays daylight until bedtime. The weather has changed...we have actually seen signs of spring with warmer days and clusters of blooming daffodils. Edward's health has changed...he is in decline.
The second week of March brought a rather dramatic change in his health. Several mornings in a row, he became nauseated and vomited. This is something he never did with radiation or the two different types of chemo therapies he took. He began having episodes of coughing to expel mucous; coughing that lasted many minutes and left him gasping for breath and red in the face. But after the mucus was expelled, he could breath better and stopped coughing. He began having difficulty with chewing and swallowing meat and some other foods.His urine and sweat had a strong, distinctive odor. For the first time since this all began in November, 2008, Ed asked for pain medication.
Me and other family members began talking about hospice, in and out of his hearing distance. He and Mama were still resisting.
After two weeks of these changes, and after a particularly bad weekend, Mama finally called me last Tuesday morning and said it's time. I immediately hanged up the phone and dialed the number for the hospice center we had discussed using. After just a few minutes of discussion with a lady at Odyssey Hospice, the wheels were set in motion.
First, his oncologist had to provide Edward's medical records and give his consent that Ed was in a situation of 'end of life' illness. This was completed within hours. Then we set up an appointment for two representatives from Odyssey to come out to complete paperwork and give Ed a health assessment. They came the next day, Wednesday, at 1:00pm and the paperwork and assessment were complete by 6:30pm.
During this visit, it was explained to Mama, his primary caregiver, what Hospice is, what it does, what it won't do, and what to expect. There was a mountain of paperwork to fill out (by the RN) and be signed (by Mama). She was nice, pleasant lady, age 71, and she was methodical in her method. After all the paperwork was finished, she checked out the patient as he lay in his electric bed.
She said Ed's pulse was good, his temperature normal, his blood pressure slightly elevated, his heart rate good, his breathing rate fine and his lungs clear (which surprised me). She measured the circumference of his right arm and asked him a few questions. She checked the place on his right ankle and confirmed what we already knew, that it was a bedsore. She treated and wrapped the bedsore and was on her way.
Hospice services began the next day, Thursday. His nurse, Deirdre, came and checked him out and a man delivered some supplies and a rolling tray and oxygen machines (for later use if needed) and a new mattress that helps prevent bed sores. Later in the afternoon an aid came and bathed him as he lay in bed.
This was all good, but the two things that Mama needed help with most was not being done...getting him to the toilet to have a bowel movement, and first thing in the morning his clothes and bed needed to be changed due to the excessive urination that happens during the night. The RN had told us she didn't really have a solution for these two problems. She thought it would be best if my brother continued to come in the evenings and get him on the toilet, but that was part of the reason we called in Hospice is because my brother is breaking his back picking up our Dad. As for Ed waking up in a pool of urine and sweat - the RN said the aids could only come as their schedules allow. All they could really tell Mama was that they would be there before noon, or after.
Mama asked if the nurse could put in a catheter for Ed, so he would cease to urinate on himself all during the night (even with her assisting him two or three times during the night) and the nurse agreed that was a good idea. Praise God, it does seem to have helped with the problem of him waking up in the morning drenched head to toe. Now it is okay if the aid who comes to bathe him is running late and perhaps not there until later in the day.
My brother is still putting our Dad on the toilet most every day to try to help him toilet. Mama has tried to convince Ed to just go in his 'pull ups', but he is having a hard time with that, and I can't say I blame him.
As the new week began, and Hospice began, Ed begin feeling better. He stopped having nausea and vomiting, and resumed eating. Granted, Mama has cut out most meats and other foods that he easily gets choked on, but he is still eating well considering. He drinks anywhere between 3 and 5 bottles of Ensure a day. He became more alert and back to 'his old self', as he was a few weeks ago.
I feel like the biggest change that has occurred in the past week is the level of pain we feel Ed is experiencing. We knew he sometimes had headaches and there are places on his body that hurt if there is too much pulling and tugging or pressure is applied. But now, we find that he will grimace in pain. He still will not call out, or even ask for pain meds. But if we ask him if he is in pain, he will sometimes admit it. And if we ask him if he wants a pain pill, he will sometimes say yes. Hospice gave us a chart to use, to judge his level of pain, and for the most part it is helpful in determining if he needs medication.
Edward hates being 'zonked out' on the pain meds, but sometimes we feel the pain is greater than he will admit, and so far have been able to ease him with half a Lortab. He has also taken half a 30mg Morphine tablet at two different times, which really 'knock him out'. He doesn't like sleeping all day and missing out on life, so Mama only gives it to him when he appears to be in real pain. (signs...grimacing, squeezing his fist, rigid body, sweating). Mostly, so far we have only seen the grimaces, and sometimes some sweating.
He continues to have seizures. They come approximately 1 week apart. Sometimes so mild that mostly there is just a bit of tremor like jerking and eye blinking. Sometimes a bit longer, a bit more jerking, and either eye blinking or staring. I witnessed one today, and it did not seem as violent or whole-body-encompassing as they have in the past. His eyes stayed open wide and staring. He did not lose consciousness and seemed aware that we were talking to him. I cried. Not because I was scared, but just saddened. When the seizure, which lasted between one and two minutes, he came to himself rather quickly and seemed okay. Note to self: His left side, the side which is not completely paralyzed, was involved in the seizure...jerking of the leg and clenching and spasms in the hand. But his paralzyed right side did not appear to be involved in the seizure. Hmmm.
Ed has exceeded, once again, the life expectancy that his doctors predicted. He has lived nearly two weeks past his last expected 'expiration date', if you will. As always, his will to live far exceeds the doctors idea of when his body should shut down and stop.
But, it is apparent that his body is tired, his organs, perhaps, slowing shutting down. No one lives forever on this earth, and the inevitable is, well, inevitable. But at least Mama has finally convinced him and herself to bring in help to get to the end with help. A nurse comes in and checks his vitals and makes notes in a book for us to review. An aide comes and bathes him and changes his sheets to make his body and bed clean and fresh. Equipment and supplies are brought and eventually, when the medication on hand runs out, they will provide more, and the manufacturers who make his seizure medications have agreed to continue providing those medications at no cost. Hospice will also provide a minister when and if needed or desired.
March is a time of change. Some good. Some not so good. But as the saying goes, the one thing that remains constant, is change.
Mama with Ed
