It has been a long time since I have posted anything on this blog. One because, it seems, I'm no good at this and two, because I procastronate.
Well, It's August 10th and I am alone. Feeling lonely, upset, too sad for words and so pissed off that I want to scream. If I start screaming I don't think I will ever stop.
On July 24th at 9:30AM, my husband slipped his earthly bounds (I'm quoting from someone but could care less). He was put in the hospital in town the week before because he was not doing well. He was dehydrated. He was hallucinating and staying awake all night, which meant that I stayed awake all night and then when he did fall asleep, I was afraid to sleep in case he woke up and started doing something dangerous. How dangerous could he be? Well I'm sitting here and he's sitting on the bed and he lights a box of tissues on fire. I grab a newspaper and snuff the fire out, turn with the box of tissue to put them out of reach. Turn back around to him and he set fire to another box of tissue that were on the other table.
I was screaming at him, screaming as I burned my hand putting out the fire and all the while, he just looked at me and said "What? It was pretty. Why can't I have that on?"
The nurse arrived a few minutes later and he was so irrational. He wanted me to get the men out of the house, he wanted her to stay with him. She called the doctor and said that he really needed to be hospitalized.
My son and his family came roaring in. Scott was calm, Patty was calm, Taylor was calm. I was a wreck. I went into the bedroom where I was crying hysterically.
Bill kept telling the nurse that I was mean and that I was no-good for him. He wanted her to take him home.
I know, I know, the hallucinations and everything else was caused by his disease. But it is hurtful to hear him say this. I'm practically lying on the floor crying.
Eventually, after 3 hours, there is a bed for him. He goes to the hospital with my son and the family and I stay home to get things and bring them to his room.
He's put on IVs because he's dehydrated. I kept trying to get him to drink stuff, but he would get hostile if I did. Even to take his pills, he would only take a couple of sips of milk or water. It was really frustrating.
Anyway, the decision was made to put him in Hospice House in Auburn. It is a lovely facility and they were so helpful. He was cranky and wanted to come home but they tried to explain why he couldn't. Within 5 days he was gone.
I left to have breakfast, cause they fed the "residents" but familys were to get their own food. It was okay, but I think he knew and just gave up. He didn't want anyone around when he passed and that's what happened.
I will always be grateful to Hospice House and to all the staff and volunteers that made the last week of my husband's life comfortable. He was in terrible pain and yet never really complained.
I love you William R. Boutin, Jr. You will forever be in my heart, my mind and my soul.
Tuesday, August 10, 2010
Monday, June 21, 2010
June 21. The Summer Solstice.
Happy Summer! Right. It's been cool here. I had the heat still on last week because Bill is cold. He sits in his chair with his sweatpants on, a tee shirt, a sweatshirt like pullover and his thick velour bathrobe on. He also has on wool socks. Finally I couldn't stand it anymore, I turned the heat off. It was 85 degrees out on Friday, a little humid, but he didn't want to open a window. I said the hell with this. I opened one window. Then I opened the window by the sink. I then opened the window in the bathroom. There's a nice cross breeze when we do this. No air conditioner is needed right now.
It's not humid out, it's breezy. The temp says 81 degrees. It's pleasant.
But, he's cold.
Well the saga continues. He was doing what the doctor said. NOT!!!
He thought the doctor said to only take the pills twice a day. He's in pain. I could see it in the way he sat in his chair. He's pull his shoulders into his body and slumped. Finally I asked the Hospice nurse about the pills. She said, the bottle says to take two pills every 4 to 6 hours; or whenever necessary. I looked at Bill and said SEE! Well he said. The doctor said to take them twice a day. Well she pulled out her phone and called the doctor's office. The doctor got on the phone and told her what he wrote in the perscription was correct. It was written on the pill bottle.
Yes, I thought to myself. Well he's been taking them (the pills) twice a day. Two weeks ago he started taking them 3 times a day. I think today will be the first time he will have taken them 4 times. I know he is hurting.
His voice is fading. I can barely understand him.
We have a hospital bed in our living room, a shower stool in the tub. He can't take a shower by himself so he just washes himself. He gets upset if I see his body. He's so emaciated. I'm scarred. I know he is fading fast.
The doctor said 5 to 6 months. I believe it will be sooner.
Our grandson came home from his sailing cruise (working cruise with his school) yesterday. He's on leave until 11PM tonite. He came to visit and wanted to give Bill a hug, but he could just lean into him a little. Taylor's over 6 ft tall and very buff. He's becoming a man and has grown up so much in the last year. His cruise took him to Europe and the experience will help him in his chosen field. Go Maine Maritine Academy. Go Taylor.
Well, back to Bill.
The Hospice nurse (Debbie) asked me if I had a funeral parlor picked out. I know I must have had a horrified look on my face because she said, "we have a few months yet." But I know she wants this detail out of the way. She also said, you need to write up his obituary. I just burst into tears. Bill was not in the room at the time. Debbie said you have to do it early because when the time comes you won't be able to do it. I know this is true.
Well, yesterday was Father's Day and I sat at my desk with a pad and paper. I didn't want him to listen to the clicking of the computer keys as he is doing now. He hates that, but he's not saying anything anymore. I figure he doesn't have the strength or the will to argue about it. I don't purposely want to annoy him, but I do have to do something or go crazy.
Anyway, I wrote the damn thing and had tears streaming down my face. I told my sister about via private message on Facebook. She said some very nice things and I really love her for her compassion. I'm sure going to need some of her strength at the end of this journey.
Well, I've written enough for today. I'll try to keep updating.
It's not humid out, it's breezy. The temp says 81 degrees. It's pleasant.
But, he's cold.
Well the saga continues. He was doing what the doctor said. NOT!!!
He thought the doctor said to only take the pills twice a day. He's in pain. I could see it in the way he sat in his chair. He's pull his shoulders into his body and slumped. Finally I asked the Hospice nurse about the pills. She said, the bottle says to take two pills every 4 to 6 hours; or whenever necessary. I looked at Bill and said SEE! Well he said. The doctor said to take them twice a day. Well she pulled out her phone and called the doctor's office. The doctor got on the phone and told her what he wrote in the perscription was correct. It was written on the pill bottle.
Yes, I thought to myself. Well he's been taking them (the pills) twice a day. Two weeks ago he started taking them 3 times a day. I think today will be the first time he will have taken them 4 times. I know he is hurting.
His voice is fading. I can barely understand him.
We have a hospital bed in our living room, a shower stool in the tub. He can't take a shower by himself so he just washes himself. He gets upset if I see his body. He's so emaciated. I'm scarred. I know he is fading fast.
The doctor said 5 to 6 months. I believe it will be sooner.
Our grandson came home from his sailing cruise (working cruise with his school) yesterday. He's on leave until 11PM tonite. He came to visit and wanted to give Bill a hug, but he could just lean into him a little. Taylor's over 6 ft tall and very buff. He's becoming a man and has grown up so much in the last year. His cruise took him to Europe and the experience will help him in his chosen field. Go Maine Maritine Academy. Go Taylor.
Well, back to Bill.
The Hospice nurse (Debbie) asked me if I had a funeral parlor picked out. I know I must have had a horrified look on my face because she said, "we have a few months yet." But I know she wants this detail out of the way. She also said, you need to write up his obituary. I just burst into tears. Bill was not in the room at the time. Debbie said you have to do it early because when the time comes you won't be able to do it. I know this is true.
Well, yesterday was Father's Day and I sat at my desk with a pad and paper. I didn't want him to listen to the clicking of the computer keys as he is doing now. He hates that, but he's not saying anything anymore. I figure he doesn't have the strength or the will to argue about it. I don't purposely want to annoy him, but I do have to do something or go crazy.
Anyway, I wrote the damn thing and had tears streaming down my face. I told my sister about via private message on Facebook. She said some very nice things and I really love her for her compassion. I'm sure going to need some of her strength at the end of this journey.
Well, I've written enough for today. I'll try to keep updating.
Monday, May 31, 2010
Last day of May
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.
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.
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.
Wednesday, March 24, 2010
Another day.
It's been awhile since I've posted anything. I'm not able to do much of anything.
We did get to go to Boston. To the Dana Farber Clinic. The trip down was excruciating. Two hours on the bus. Walking around the bus station and thru it to get to the outside. Getting a cab to take us to the clinic. It cost us $17.40 to go 4 mile. This cabbie drove us all over the place. We passed the same police station twice. I mentioned it and he said oh no not the same. But I remembered the address, It was in bold letters on the side of the building. I was pissed. Bill wanted to give him 5 dollar tip, I said no fucking way. I gave the guy a twenty dollar bill and then I gave him a piece of my mind. I was totally pissed.
Walked some more to get to the right place inside this incredibly busy and hectic place. Outside the building there are valets who will park you car if you drive in. Next time, if we go, that's what I'm going to do. No more cab rides for me.
The doctor was nice. They asked questions and said they looked at the reports we had sent to them. They did the same type of exam that the doctor here in Maine did. Put a scope down his nose and looked into his throat and larynx. But, saw no cancer in the larynx. The time that I saw the pictures from before there were these white spots (the cancer cells) on the walls of his larynx. They weren't there this time. How can that be? I asked the doctor and she said she's not sure. His throat is still sore and of course, what he was being treated for, the infection, is probably another cancer site. HOLY crap.Well, they want to biopsy and then figure out how to treat.
That was in February. It is now almost April and we still haven't heard from MaineCare whether we can get the treatment in Boston or not. Tomorrow I'm going to call and see if they want Bill to die. Would that be cheaper for them???
I'm tired right now. Very depressed and am about at the end of my rope.
I'll post again later. Hopefully, we'll get the ball rolling again.
We did get to go to Boston. To the Dana Farber Clinic. The trip down was excruciating. Two hours on the bus. Walking around the bus station and thru it to get to the outside. Getting a cab to take us to the clinic. It cost us $17.40 to go 4 mile. This cabbie drove us all over the place. We passed the same police station twice. I mentioned it and he said oh no not the same. But I remembered the address, It was in bold letters on the side of the building. I was pissed. Bill wanted to give him 5 dollar tip, I said no fucking way. I gave the guy a twenty dollar bill and then I gave him a piece of my mind. I was totally pissed.
Walked some more to get to the right place inside this incredibly busy and hectic place. Outside the building there are valets who will park you car if you drive in. Next time, if we go, that's what I'm going to do. No more cab rides for me.
The doctor was nice. They asked questions and said they looked at the reports we had sent to them. They did the same type of exam that the doctor here in Maine did. Put a scope down his nose and looked into his throat and larynx. But, saw no cancer in the larynx. The time that I saw the pictures from before there were these white spots (the cancer cells) on the walls of his larynx. They weren't there this time. How can that be? I asked the doctor and she said she's not sure. His throat is still sore and of course, what he was being treated for, the infection, is probably another cancer site. HOLY crap.Well, they want to biopsy and then figure out how to treat.
That was in February. It is now almost April and we still haven't heard from MaineCare whether we can get the treatment in Boston or not. Tomorrow I'm going to call and see if they want Bill to die. Would that be cheaper for them???
I'm tired right now. Very depressed and am about at the end of my rope.
I'll post again later. Hopefully, we'll get the ball rolling again.
Thursday, February 11, 2010
Exploding tempers
Today's news. They are putting a PICC line into my husband so that he won't have to be stuck everyday with a needle. Only this is a little different. When he was in hospital, he had a direct line in his vein so they could do the infusion. No sticking him every 6 hours. Well, now, this new thing is going to go into his vein and travel up into the vein to the site of the infection (that's how the doctor explained it to Bill). I wasn't there cause as I said before I do errands when he's getting the infusion. He will be having the infusion every 6 hours again, but in the home. No need to go to the hospital every day. Who will have to do this? Me of course. The social worker explained to Bill that someone would come to the house (a visiting nurse) on Friday to teach us what needed to be done. He was excited about not having to go to the hospital every day. Me too; except with a grain of salt.
We get home and he's explaining how this is going to work. Wait, he's yelling because I got 80% hamburger instead of 85%. I'm making him something to eat and must concentrate on him talking, making his dinner and trying not to show him how much pain I was in from having to walk in the grocery store. There were no ride-on carts available. You know what a big grocery store is like. The milk is in the farthest corner of the store, the bakery (individual bulky rolls) in the bakery near the entrance. Hamburg in the meat cases in the back of the store; frozen juice concentrate (use that because jugs are heavy) in the middle of the frozen food aisle. Well, anyway, I'm multi-tasking. made his burger gave it to him so he could eat while I finished cooking mine and putting the mayo and pickles away. I go to sit & eat my burger and the phone rings. Don't you just hate when that happens.
Bill-o is eating, I haven't started to eat. The social worker is on the phone. She's explaining to me how the nurse won't be able to make it to the house until Monday (which is a holiday). She can't come tomorrow there are other commitments. Yea, I know what they are. Furlough days for state workers because of budget shortfalls. If it were an emergency we'd have to go to the hospital. I'm asking the questions I should from the social worker and the shit hits the fan. Bill is raving because of my side of the conversation. He stomps into the kitchen and slams his plate with the uneaten burger patty onto the counter and goes back to his chair. He's only taken one bite off the burger. He's raving about this conversation and I'm trying to explain what the social worker was saying. His philosophy is that if they tell him something it should be done that way. No leeway for other people's schedules. His way or no way. He's ranting and I'm trying to explain and eat my hamburger; it's cold by now. The arguing has upset my stomach but I hate to waste food we can't afford to throw it away. I tell him if they put PICC in tomorrow at 9:00 AM. he then could go up and get the infusion done and we could go home and not have to go out again. But we'll have to do the hospital thing until the nurse can teach us how to do it ourselves and, oh yea, bring the machine that has to be used.
Of course he's bitching and moaning. Why do I have to listen to this. He's asking questions, I'm trying to eat. It's too much for me. I snap and tell him to stop bitching. The world just doesn't revolve around him. Well, that was smart. He's alway had a bad temper and it's been short. I don't fear that he will be violent toward me but his words are hurtful. I'm only the messanger, but you know what they say, don't kill the messanger. It's abusive, I know it, he knows it. I've given him passes and explained away his rantings. But, it's taking a toll on me.
He's speaking (yelling) and my ears are buzzing. I feel my BP climbing. I'm stressing so I keep my mouth shut for the next little bit and try to close my ears to him.
The food didn't go down too well. It's a lump in my stomach. I'm extremely tired. The construction workers around the complex woke us up at 8:30. They were leveling our back stoop and preparing the area around our door there for the new siding being put on. So they were hammering and using a machinery, generally making lots of noise. Almost as much noise as was inside.
He calms down a bit and is now watching tv. Every once in awhile he says something. I'm trying to read, or look at the computer. I'm not a machine that can have thing thrown at it and be conversant with all the information coming at me. He's yelling again because I didn't hear him the first time. He doesn't repeat himself, says never mind in that tone that tells you he's angry again.
His voice isn't loud, he's got cancer in his larynx. His voice is almost gravely and just above a whisper. But he expects me to have perfect pitch and be able to hear him. He's facing away from me. My computer and desk are behind his chair. The tv is on, the construction noise is loud and I'm supposed to hear what he is saying. Shit I'm superwoman.
I've had enough. I'm going to take a nap. I leave and have peace in the bedroom. Except for the construction noise. I'm trying to fall asleep. Yes, blissfully quiet right then. The workers have moved away. Yes, peace. Oh wait, burning in my stomach, acid reflux is not my friend. I'm coughing from this. Did I mention my walk thru the grocery store?? My hip and leg are hurting. I try to get out of bed and I cramp up. Damn, damn and double damn. Lay back down, start drifting off again. Acid reflux again. Come on, God why? WHY?
STRESS!!!
I must have fallen into a fitful sleep because Bill was now telling me it was almost 7PM. Wow, almost 3 hours of peace? Not hardly.
I get up and resume my internet perusals. Talk calmly with Bill and then over something, I don't know what, he starts yelling again. I feel my BP rising again; dizziness again too. Well isn't this special. I'm having a heart attack. No it's just STRESS.
Bill's looking kind of scared. He's ready for 911. I tell him I'm okay. He's sitting and sort of relaxing again. Then he says. "You know, I'm being a total ass today (REALLY?). But, I don't think of you as getting older. I know you are, but your still young to me. "
How can he say something like that and be such an absolute mean son of a so and so.
That's how my day went. Oh, yea. We argued again. He's telling me that I snap at everything he says. GEEZ. I probably am but he says the stupidest things.
I was looking at a website regarding free eye glasses. He said if I wasn't on the computer everyday or if I didn't read I wouldn't need new eyeglasses. I've had these glasses for over 2 years, I told him. I know that, he says, I had to pay for them. (Crux of the matter, I wasn't working so he had to pay for them.) How about all the years I had to pay for all our medical insurances and the money I spent on his dentures, and the stuff I had to pay for him because he wasn't working. I didn't say this to him. All I said was that I thought we were a family. What's your is mine and what's mine is yours? Who's counting the money. I tried to explain that people's eyes change. I've had my glasses since 2003, he says. And I counter with you probably need new glasses too. Well, he's gone off again and this time I didn't hold back. I told him he was a selfish bastard and that I was tired of him telling me that I was being a bitch if I needed stuff. Hell I haven't bought a piece of clothing for myself in over 3 years.
I got retroactive money from SSA for disability and he promptly went out an bought a big screen tv. Whose money was that? Of course, we both watch the tv and it is nice. I don't begrudge him the tv. The money was ours.
I didn't talk to him for the next 2 hours and he went to bed. Whoops, I need some medicine. I brought him the meds. He gets up again. He can't sleep. I give him half a sleeping pill. He's off to bed and now it's 2am and I have to go to bed so I can start all over again at 7am.
Wish me luck.
We get home and he's explaining how this is going to work. Wait, he's yelling because I got 80% hamburger instead of 85%. I'm making him something to eat and must concentrate on him talking, making his dinner and trying not to show him how much pain I was in from having to walk in the grocery store. There were no ride-on carts available. You know what a big grocery store is like. The milk is in the farthest corner of the store, the bakery (individual bulky rolls) in the bakery near the entrance. Hamburg in the meat cases in the back of the store; frozen juice concentrate (use that because jugs are heavy) in the middle of the frozen food aisle. Well, anyway, I'm multi-tasking. made his burger gave it to him so he could eat while I finished cooking mine and putting the mayo and pickles away. I go to sit & eat my burger and the phone rings. Don't you just hate when that happens.
Bill-o is eating, I haven't started to eat. The social worker is on the phone. She's explaining to me how the nurse won't be able to make it to the house until Monday (which is a holiday). She can't come tomorrow there are other commitments. Yea, I know what they are. Furlough days for state workers because of budget shortfalls. If it were an emergency we'd have to go to the hospital. I'm asking the questions I should from the social worker and the shit hits the fan. Bill is raving because of my side of the conversation. He stomps into the kitchen and slams his plate with the uneaten burger patty onto the counter and goes back to his chair. He's only taken one bite off the burger. He's raving about this conversation and I'm trying to explain what the social worker was saying. His philosophy is that if they tell him something it should be done that way. No leeway for other people's schedules. His way or no way. He's ranting and I'm trying to explain and eat my hamburger; it's cold by now. The arguing has upset my stomach but I hate to waste food we can't afford to throw it away. I tell him if they put PICC in tomorrow at 9:00 AM. he then could go up and get the infusion done and we could go home and not have to go out again. But we'll have to do the hospital thing until the nurse can teach us how to do it ourselves and, oh yea, bring the machine that has to be used.
Of course he's bitching and moaning. Why do I have to listen to this. He's asking questions, I'm trying to eat. It's too much for me. I snap and tell him to stop bitching. The world just doesn't revolve around him. Well, that was smart. He's alway had a bad temper and it's been short. I don't fear that he will be violent toward me but his words are hurtful. I'm only the messanger, but you know what they say, don't kill the messanger. It's abusive, I know it, he knows it. I've given him passes and explained away his rantings. But, it's taking a toll on me.
He's speaking (yelling) and my ears are buzzing. I feel my BP climbing. I'm stressing so I keep my mouth shut for the next little bit and try to close my ears to him.
The food didn't go down too well. It's a lump in my stomach. I'm extremely tired. The construction workers around the complex woke us up at 8:30. They were leveling our back stoop and preparing the area around our door there for the new siding being put on. So they were hammering and using a machinery, generally making lots of noise. Almost as much noise as was inside.
He calms down a bit and is now watching tv. Every once in awhile he says something. I'm trying to read, or look at the computer. I'm not a machine that can have thing thrown at it and be conversant with all the information coming at me. He's yelling again because I didn't hear him the first time. He doesn't repeat himself, says never mind in that tone that tells you he's angry again.
His voice isn't loud, he's got cancer in his larynx. His voice is almost gravely and just above a whisper. But he expects me to have perfect pitch and be able to hear him. He's facing away from me. My computer and desk are behind his chair. The tv is on, the construction noise is loud and I'm supposed to hear what he is saying. Shit I'm superwoman.
I've had enough. I'm going to take a nap. I leave and have peace in the bedroom. Except for the construction noise. I'm trying to fall asleep. Yes, blissfully quiet right then. The workers have moved away. Yes, peace. Oh wait, burning in my stomach, acid reflux is not my friend. I'm coughing from this. Did I mention my walk thru the grocery store?? My hip and leg are hurting. I try to get out of bed and I cramp up. Damn, damn and double damn. Lay back down, start drifting off again. Acid reflux again. Come on, God why? WHY?
STRESS!!!
I must have fallen into a fitful sleep because Bill was now telling me it was almost 7PM. Wow, almost 3 hours of peace? Not hardly.
I get up and resume my internet perusals. Talk calmly with Bill and then over something, I don't know what, he starts yelling again. I feel my BP rising again; dizziness again too. Well isn't this special. I'm having a heart attack. No it's just STRESS.
Bill's looking kind of scared. He's ready for 911. I tell him I'm okay. He's sitting and sort of relaxing again. Then he says. "You know, I'm being a total ass today (REALLY?). But, I don't think of you as getting older. I know you are, but your still young to me. "
How can he say something like that and be such an absolute mean son of a so and so.
That's how my day went. Oh, yea. We argued again. He's telling me that I snap at everything he says. GEEZ. I probably am but he says the stupidest things.
I was looking at a website regarding free eye glasses. He said if I wasn't on the computer everyday or if I didn't read I wouldn't need new eyeglasses. I've had these glasses for over 2 years, I told him. I know that, he says, I had to pay for them. (Crux of the matter, I wasn't working so he had to pay for them.) How about all the years I had to pay for all our medical insurances and the money I spent on his dentures, and the stuff I had to pay for him because he wasn't working. I didn't say this to him. All I said was that I thought we were a family. What's your is mine and what's mine is yours? Who's counting the money. I tried to explain that people's eyes change. I've had my glasses since 2003, he says. And I counter with you probably need new glasses too. Well, he's gone off again and this time I didn't hold back. I told him he was a selfish bastard and that I was tired of him telling me that I was being a bitch if I needed stuff. Hell I haven't bought a piece of clothing for myself in over 3 years.
I got retroactive money from SSA for disability and he promptly went out an bought a big screen tv. Whose money was that? Of course, we both watch the tv and it is nice. I don't begrudge him the tv. The money was ours.
I didn't talk to him for the next 2 hours and he went to bed. Whoops, I need some medicine. I brought him the meds. He gets up again. He can't sleep. I give him half a sleeping pill. He's off to bed and now it's 2am and I have to go to bed so I can start all over again at 7am.
Wish me luck.
Sunday, February 7, 2010
Day 10
Day 10 for IV infusion. Crabby hubby drove himself today. Reason? Guilt. I'm having bad muscle spasms because of all the driving I've been doing. Really bad muscle cramps in my back, hip and right leg. While he's doing his thing in the hospital, I have to do errands. I have 45 minutes to do it. If I'm late he gets mad. Says I know what time I have to pick him up. Why wasn't I there. He doesn't want to do anything but sit in the house and watch tv. He watches the same things over and over. But anyway, I guess he doesn't trust me enough to go to the store and then come home again. What's he afraid of? Me driving away? HUH!!!
Yesterday was horrorific. He bitched because I got the wrong type of chocolate chip cookie. Okay, so I didn't read the damn label. I just saw 2 cookies that were softer than the one giant cookie. Soft is good for his throat right? What I didn't realize was there was creme between the two cookies. Before he even opened it, he tossed it at me and said "Here, you eat this shit." Well, I finally read the label and saw the creme. I stomped into the kitchen, seperated the cookies, and scraped off the creme, I then put them on a piece of paper towel and put them on the table by his side. "Here's your cookie for Ch---'s sake."
I then stomped (yeah like I can stomp with a limp) into my bedroom and semi-slammed the door. Where I proceeded to cry my heart out. I cry easily but after all the shit I've been thru I couldn't take it. I seriously contemplated taking the pills in the new bottle of sleeping meds the doc gave me. I'm not crazy. Just depressed. I didn't of course. But, I will tell the doc about it when I see him next week. Anyway, nothing I do is good enough.
After awhile, I turned on the tv and watched it for about 3 hours. He came to the door, asked if I wanted coffee. I told him to make it. The look on his face was priceless. He was stunned. I was still pissed. Well, wonder of wonders he did make the coffee. he even brought me a cup all fixed like I drink it.
Later, much later, he apologized. He said he didn't want to make me cry. (Right) He hasn't apologized in a long time, so I accepted his apology. I'm still upset, or I wouldn't be writing this. But I guess I'll never forget his tantrum. Well, time for bed.
Yesterday was horrorific. He bitched because I got the wrong type of chocolate chip cookie. Okay, so I didn't read the damn label. I just saw 2 cookies that were softer than the one giant cookie. Soft is good for his throat right? What I didn't realize was there was creme between the two cookies. Before he even opened it, he tossed it at me and said "Here, you eat this shit." Well, I finally read the label and saw the creme. I stomped into the kitchen, seperated the cookies, and scraped off the creme, I then put them on a piece of paper towel and put them on the table by his side. "Here's your cookie for Ch---'s sake."
I then stomped (yeah like I can stomp with a limp) into my bedroom and semi-slammed the door. Where I proceeded to cry my heart out. I cry easily but after all the shit I've been thru I couldn't take it. I seriously contemplated taking the pills in the new bottle of sleeping meds the doc gave me. I'm not crazy. Just depressed. I didn't of course. But, I will tell the doc about it when I see him next week. Anyway, nothing I do is good enough.
After awhile, I turned on the tv and watched it for about 3 hours. He came to the door, asked if I wanted coffee. I told him to make it. The look on his face was priceless. He was stunned. I was still pissed. Well, wonder of wonders he did make the coffee. he even brought me a cup all fixed like I drink it.
Later, much later, he apologized. He said he didn't want to make me cry. (Right) He hasn't apologized in a long time, so I accepted his apology. I'm still upset, or I wouldn't be writing this. But I guess I'll never forget his tantrum. Well, time for bed.
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