Alot has happened this month. Boston doctor scheduled surgery for May 20th. YEA! We were getting ready to go down. Hubby was saying. Finally they are going to do something about it.
Then the call came. The doctor herself called and said. Well, if he wasn't going to get the PET scan done (he is in excruciating pain when laying on the machine) there probably isn't alot they can do. They need that for their "map" of the cancer. Oh yea, then she said: "The hospital here probably wouldn't do uncompensated care because there are hospitals in Maine that could probably do the same work. They wouldn't waive their fee." She then said: "I could probably waive my fee, but, it's alot to ask." WHAT????
Wasn't the oath they took to do no harm? Where in that oath is it that they have to make tons of money. I know, I know, They have lots of expenses too. THEY have malpractice insurance to pay. THEY have other things they are obligated to pay. WELL, WHAT ABOUT THE OBLIGATION TO HELP PEOPLE?
This was 3 days before we were going to go to Boston. I had it all planned out. So we cancelled it and then I called our doctor here. He quickly arranged for Bill to see a doctor in Portland. That appointment was on the 26th. When I told Bill about it he said to me. I don't want to go. I just looked at him, went into the bedroom and lay down on the bed. I cried and cried. I have a constant headache. My heart hurts, my stomach is in knots and I don't know how to help him.
I called and cancelled the appointment. The nurse said okay, call back if he changed his mind. We both know he won't. He is ready to die.
Early Wednesday morning, 1:20 AM to be exact. I was shutting down the computer, he had just gone into the bedroom. He came out with a handkerchief red with blood. I dashed to get dressed. He said, I'm not going anywhere. I looked at him like he was crazy. "WHAT!!!" was my reaction. He said what can they do? I sat in my computer chair and just looked on in horror as blood poured from his mouth. He had a THIRD cloth to his mouth and it was rapidly filling with blood. He turned to me and said, Should we call an ambulance or do you want to drive me? Of course, I took him down. They took him in and of course, paperwork had to be done. All the while blood is coming from his mouth and he was wiping it off. The attendant was kind of freaked out, but finished the paperwork and carried the paper back into the onclave of the ER. Two minutes later a nurse came out and they took us into triage. Where Bill was weighed. You could have knocked me over with a feather. He weighs only 89 lbs. How can a supposed 5'11" (his height before, he is now 5'7") live being only 89 lbs. They can't. Well that ended the triage and the nurse took us back into a room. An attending physician came in and tried to look past the blood into his mouth. They took him up to the room at 5:15 AM. I left at 4:30 cause I was exhausted and I had been up for 22 hours. I went to bed and got up at 10. Showered and did all the immediately needed things. Coffee being the first. Got to the hospital around 11:15. He was in bed with an IV and the nurses were checking on him. He gets irritated when they come in to take vitals but they try to be nice. After all, they are looking after him on Doctor's orders. There's a schedule and they have to keep it. Rules are rules. Missed the doctor, of course. Nothing I could do but sit there and watch him nod off to sleep. I left about 2 so that I could do somethings at home. Notify people and call others for help.
Did I mention that we don't have health insurance and no MaineCare as of May 1st. So, now we are going to have this huge bill. I'll let you know. I don't want to know. On top of it all the business offices were trying to contact me and I was either in the hospital or enroute. At home, I'd call them and get a message. I'd leave a message and then go back to the hospital. It's a holiday weekend and no one will be around until Tuesday. Then I can talk about money to them.
Right now there is a Health Reach nurse here from Hospice Care. He has been put on this. There isn't much that can be done now, except to keep him comfortable and in the home. He doesn't want heroic measures taken or done. And another thing, he's not honest with the nurse. He won't tell her the truth to them about the pain. But, if I try to speak he gets angry and defensive. Well, that's it for today.
My job is to make him comfortable. I hope I can do it and survive.
Monday, May 31, 2010
Sunday, May 2, 2010
May 2010
Today is the first of May. May Day, May pole, and scarry Soviet parades to show their might. Those are things that I remember from childhood and earlier in my life. Today, I'm sitting here looking at my husband who is desperately ill. He has given up. He has not eaten in days. All he is taking is pain medication and water. He is stooped over in his chair watching tv. He gets up from bed after he goes to sleep every couple of hours to take more pills and to SMOKE A CIGARETTE. I am totally distraught because he is not trying anymore. He said why bother.
Two weeks ago, he woke me up on Sunday morning and said that the coffee was on. That's what he's done for awhile now. It wasn't too early but that's neither here nor there. I'm sitting at my desk, he's watching tv. I'm drinking coffee, he's mumbling something. My hearing isn't the best lately and his voice is very low. He gets frustrated when I say "what?" And I don't mean to make him repeat himself, but I didn't hear him.
"I didn't say anything," is his usual reply but that day wasn't normal. He said, "I woke up about 3 this morning with my mouth full of blood." I lifted my gaze from the computer, and yelled "WHAT!! Why didn't you wake me. Do you think that's normal? What the hell were you thinking." He said, "I didn't want to wake you." Crap, crap, SHITTTTT. I told him what I thought as I was throwing clothes on. I bullied and pushed him so I could get him to the ER. Finally, we get to the hospital and of course, they want HIM to tell them what's wrong. He can barely speak loud enough for anyone to hear.
It wasn't too long a wait. They brought us back into the inner sanctum of the ER and my husband had to repeat what was going on. Three different people tried to see into his mouth. He couldn't open it wide enough for them to see what was happening. The Monday before we had seen his primary care physician and Bill told him that his pain level was like at an 8 level. I knew better. He's been eating the naproxen tablets, 500 mg, like they were candy. He's on another type of pain med, Oxycodone (5 mg) and those were almost gone. An 80 pill perscription that was given him 23 days earlier. They were supposed to be taken 1 or 2 at a time, every 8 hours. Well they are almost all gone.
The doctor in the ER managed to pry Bill's jaw open a little and saw where the blood was seeping from on his jaw. Evidentally his pain was so bad that he'd been grinding his teeth onto his gum. Because of his pain level and various levels in his blood, they were going to admit him. This way they could monitor his pain and also try to bring up some of his chemical levels in his blood. His enzyme levels were scewed. He's really a mess.
Well, they put him on a pain killer that he could self medicate. You know the type. It's intervenous, they push a button for release of the medication into the blood stream. This worked so well, he put himself into a medicine induced coma. They put him on oxygen because his breathing was so slowed down because of the meds that he pushed on himself. I thought it was over. I didn't think I was going to bring him home.
I started by calling his sister. I left a message for her and she called me back. Unbeknowst to us, their mother had moved into the same building with my sister-in-law. So they came to see him at the hospital that night. He was a little better, but still groggy and kept drifting off. I mean hell, his mother is really up there in age. She is so much frailer than when we saw her 3 years ago. [Please, don't go there. It's not his mother's fault. Bill is a stubborn so and so. If I pressed, he would have just went his own way as he always does. The last time we saw her it wasn't a happy time either. His younger sister, by 20 months had passed away. No one told us that she was ill. Bill picked up the newspaper and read her obituary in the paper. We showed up at the memorial service (our four kids and a few of the older grandkids).] Well, anyway, it seems that he vaguely remembered her being there. I haven't spoken with them since. I guess life goes on as before. Although his mother did have tears in her eyes when she left the hospital room.
Anyway, after a bit of wrangling, we got Bill sorted out and his meds were changed so that he has more powerful medicine 15 mg of Oxyconton; but, he is supposed to take this only for severe pain. He has been taking them religiously because on a scale of 1 to 10 his pain level is 15 right now. He finally confessed this to me.
The after affects of his being in the hospital was having him set up with a nurse that will come to the house once a week to check on him. He never tells them the truth. I wrote down a list of things that they asked him and told the nurse that he lied, on paper so Bill couldn't see it.
Then the topper of all this is that As of May 1st, he has no health insurance. MaineCare dropped him because we make too much money. $1976.00 a month is too much. You can only get care from them if you make under $1205.00. Well, I said, what the hell are we supposed to do??? They even took our $169.00 Food Stamp allotment away. So out of our money we have to pay rent, 392.00, lights, 230.00 (on payment plan), cable 139.00 (our only entertainment, tv and computer), car insurance 89.00, car payment 275.00, phone 25.00 and now food. Of course, even with the food stamps we bought food, spent like 50.00 a week on food and toiletries. Oh yeah, we have to get gas, $30.00 didn't even fill the tank today. So now we are looking at negative money. Maine Care did say after we accumulate bills of $9,644.00 they will magnamously give him back his coverage. I spent $39.00 on co-pays for medicines just last month. Without perscription coverage who knows how much money we'll have to spend.
The advice from social workers. Go to ER and they must give us a voucher to get him medicine. WOW! more red-tape. We'd have to apply for uncompensated care. Everywhere we go now, we will have to fill out papers. This sucks big time. And if it's too much trouble he won't go.
I guess I'll sign off for now. It gets tiring. I'm tired. It's 3:14 AM and I'm still up. He went to bed around 12:15 AM. and he just got back up. Good night for now.
Two weeks ago, he woke me up on Sunday morning and said that the coffee was on. That's what he's done for awhile now. It wasn't too early but that's neither here nor there. I'm sitting at my desk, he's watching tv. I'm drinking coffee, he's mumbling something. My hearing isn't the best lately and his voice is very low. He gets frustrated when I say "what?" And I don't mean to make him repeat himself, but I didn't hear him.
"I didn't say anything," is his usual reply but that day wasn't normal. He said, "I woke up about 3 this morning with my mouth full of blood." I lifted my gaze from the computer, and yelled "WHAT!! Why didn't you wake me. Do you think that's normal? What the hell were you thinking." He said, "I didn't want to wake you." Crap, crap, SHITTTTT. I told him what I thought as I was throwing clothes on. I bullied and pushed him so I could get him to the ER. Finally, we get to the hospital and of course, they want HIM to tell them what's wrong. He can barely speak loud enough for anyone to hear.
It wasn't too long a wait. They brought us back into the inner sanctum of the ER and my husband had to repeat what was going on. Three different people tried to see into his mouth. He couldn't open it wide enough for them to see what was happening. The Monday before we had seen his primary care physician and Bill told him that his pain level was like at an 8 level. I knew better. He's been eating the naproxen tablets, 500 mg, like they were candy. He's on another type of pain med, Oxycodone (5 mg) and those were almost gone. An 80 pill perscription that was given him 23 days earlier. They were supposed to be taken 1 or 2 at a time, every 8 hours. Well they are almost all gone.
The doctor in the ER managed to pry Bill's jaw open a little and saw where the blood was seeping from on his jaw. Evidentally his pain was so bad that he'd been grinding his teeth onto his gum. Because of his pain level and various levels in his blood, they were going to admit him. This way they could monitor his pain and also try to bring up some of his chemical levels in his blood. His enzyme levels were scewed. He's really a mess.
Well, they put him on a pain killer that he could self medicate. You know the type. It's intervenous, they push a button for release of the medication into the blood stream. This worked so well, he put himself into a medicine induced coma. They put him on oxygen because his breathing was so slowed down because of the meds that he pushed on himself. I thought it was over. I didn't think I was going to bring him home.
I started by calling his sister. I left a message for her and she called me back. Unbeknowst to us, their mother had moved into the same building with my sister-in-law. So they came to see him at the hospital that night. He was a little better, but still groggy and kept drifting off. I mean hell, his mother is really up there in age. She is so much frailer than when we saw her 3 years ago. [Please, don't go there. It's not his mother's fault. Bill is a stubborn so and so. If I pressed, he would have just went his own way as he always does. The last time we saw her it wasn't a happy time either. His younger sister, by 20 months had passed away. No one told us that she was ill. Bill picked up the newspaper and read her obituary in the paper. We showed up at the memorial service (our four kids and a few of the older grandkids).] Well, anyway, it seems that he vaguely remembered her being there. I haven't spoken with them since. I guess life goes on as before. Although his mother did have tears in her eyes when she left the hospital room.
Anyway, after a bit of wrangling, we got Bill sorted out and his meds were changed so that he has more powerful medicine 15 mg of Oxyconton; but, he is supposed to take this only for severe pain. He has been taking them religiously because on a scale of 1 to 10 his pain level is 15 right now. He finally confessed this to me.
The after affects of his being in the hospital was having him set up with a nurse that will come to the house once a week to check on him. He never tells them the truth. I wrote down a list of things that they asked him and told the nurse that he lied, on paper so Bill couldn't see it.
Then the topper of all this is that As of May 1st, he has no health insurance. MaineCare dropped him because we make too much money. $1976.00 a month is too much. You can only get care from them if you make under $1205.00. Well, I said, what the hell are we supposed to do??? They even took our $169.00 Food Stamp allotment away. So out of our money we have to pay rent, 392.00, lights, 230.00 (on payment plan), cable 139.00 (our only entertainment, tv and computer), car insurance 89.00, car payment 275.00, phone 25.00 and now food. Of course, even with the food stamps we bought food, spent like 50.00 a week on food and toiletries. Oh yeah, we have to get gas, $30.00 didn't even fill the tank today. So now we are looking at negative money. Maine Care did say after we accumulate bills of $9,644.00 they will magnamously give him back his coverage. I spent $39.00 on co-pays for medicines just last month. Without perscription coverage who knows how much money we'll have to spend.
The advice from social workers. Go to ER and they must give us a voucher to get him medicine. WOW! more red-tape. We'd have to apply for uncompensated care. Everywhere we go now, we will have to fill out papers. This sucks big time. And if it's too much trouble he won't go.
I guess I'll sign off for now. It gets tiring. I'm tired. It's 3:14 AM and I'm still up. He went to bed around 12:15 AM. and he just got back up. Good night for now.
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