continued from chapter 13: part 4
When Hal became ill I would have benefited from a counselling service for families who are confronted with cancer. You need to learn about available services, where to get a break financially if you need it, most important, how to manage pain, or, to put it simply, what you might expect. I never found that there was time for anyone to sit down with me in the hospital and I didn't find the social worker of much use.
I understand there is more available help now.
I corralled a compassionate nurse once and asked her to tell me what I might expect if Hal should die because of the cancer in his liver. She told me in a simple and straightforward manner, and I felt relief just to know.
I needed to know what I might expect. By the time he died, the tumors in his lungs actually shut him down.
If you have to travel from your own town for treatment or need a place to stay while your partner is hospitalized, there was,during Hal's illness a country-wide hotel chain that held rooms available for patients and families from out of town,arranged
through the cancer society.
Pain control is an option that I never investigated early in Hal's illness; I assumed the doctors would be knowledgeable about what kind of drugs and what dosage would keep Hal free from pain and keep his head clear.
We read a lot about the value of heroin-laced drinks and other narcotics that keep the patient pain -free and yet awake, but I'm not sure the message has reached
the entire medical profession.
Most hospitals now seem to have a pain management clinic, although I never heard of one when Hal was in his final stages and in a lot of pain.
Now is the time to ask questions. Ask your doctor for information about pain-
management, ask your visiting nurses. There may be a private service, a government service, a hospital service. You want to know what they would use for a cancer patient with your partner's symptoms, what they do and how they do it, and keep asking until you begin to understand a pattern from each of your sources. Keep that option in mind just in case. Don't just expect them to manage the pain, because they are not all experts, though they'd like to be.
Not all cancer patients die in pain and that's important to remember.
Dying with dignity didn't have a lot of meaning to me until I was confronted with death first hand. In Canada there is the Dying With Dignity society established by Gretta Riddell-Dixon, a professor of gerontology. The society was formed to inform and educate Canadians about "the right to a good death." They promote the idea of a living will, which would prevent further medical treatment if the case is hopeless or if further treatment simply prolongs suffering. There are many rights that each citizen has in regards to his body and his treatment and the society details
these options.
continued in chapter 14: part 1
Saturday, September 29, 2007
Thursday, September 27, 2007
chapter 13: part 4 OPTIONS
continued from Chapter 13: part 3
Three of us caregivers in the support automatically stayed close together and each of us faced tough options.
Evan and Rachael faced their own different scenario; during his last few months, he was no longer able to work and he stayed home with regular visits from the visiting Nurse.
Rachael returned from work one day to find Evan profoundly depressed. It seems the nurse, when she had come by that day, had told him that since he was terminal he should pre-register at the nearby general hospital so that he'll be sure of a bed when he needs it. He wasn't prepared to hear that he was dying.
Eventually Rachael quietly signed him up for a palliative care ward, but when she went to look at it, she found that there were only four-bed wards, no private rooms, and she knew that he would want as much privacy as possible. He was that kind of person.
From what I've heard of palliative care, she would have been given all the privacy she needed.
When he was clearly dying, she managed to get him into a private hospital room. At night she slept on a sofa in the room and left for home around six thirty in the morning, to clean up and do any pressing business and then returned. The floor was noticeably short-staffed and she was fearful that he wouldn't get enough attention if she wasn't there for him. She wanted to be with him and she was, at the end.
My friend Berry brought Ronald home from the hospital and she managed with the help of her son, Don. The discharge planner was the only one who ever told her that Ron was terminal and the planner did mention a hospice group nearby who could come to the house and help out.
She chose to go it alone with Don's help. Ronald was free of pain and managed to exercise a bit each day.
Don moved in with them for the remaining months and with his help she managed.
He went to work each day but she knew relief was at hand in the evening.
The doctor stopped by regularly to keep an eye on things. She despaired at trying to keep Ronald propped up in bed instead of sliding down so that his feet were uncomfortable pressed against the foot board. She devised a good plan to combat this; she kicked off her shoes, stood on the bed straddling him, then she carefully gripped under his arms and at the count of three, pulled him up in place. Worked beautifully. in their pre-illness days, she was tiny and he was tall and skinny so it conjures quite a picture.
She and Don had a reward for getting through the day. First,they got as much liquid nutrient into Ron as they could, then they settled him for sleep. When he was thoroughly asleep, they would cook a splendid diner, preceded by a healthy drink and play some Vivaldi; the music and the good food eased the tension from them.
Ron's bedsores forced her to send him to hospital for his final days and she regrets that she couldn't hang in that little bit longer. But again that's hindsight. She was probably emotionally and physically depleted and in need of more help.
Each family has its own need, whether it is for a temporary condition that is expected to be cured or whether it is for a terminal patient. Don't ever feel that you are going through this alone. There are answers out there for you. Ask your doctor, or call a visiting nurse association or speak to the hospital discharge planner.
And take notes.
continued in chapter 13: part 5
Three of us caregivers in the support automatically stayed close together and each of us faced tough options.
Evan and Rachael faced their own different scenario; during his last few months, he was no longer able to work and he stayed home with regular visits from the visiting Nurse.
Rachael returned from work one day to find Evan profoundly depressed. It seems the nurse, when she had come by that day, had told him that since he was terminal he should pre-register at the nearby general hospital so that he'll be sure of a bed when he needs it. He wasn't prepared to hear that he was dying.
Eventually Rachael quietly signed him up for a palliative care ward, but when she went to look at it, she found that there were only four-bed wards, no private rooms, and she knew that he would want as much privacy as possible. He was that kind of person.
From what I've heard of palliative care, she would have been given all the privacy she needed.
When he was clearly dying, she managed to get him into a private hospital room. At night she slept on a sofa in the room and left for home around six thirty in the morning, to clean up and do any pressing business and then returned. The floor was noticeably short-staffed and she was fearful that he wouldn't get enough attention if she wasn't there for him. She wanted to be with him and she was, at the end.
My friend Berry brought Ronald home from the hospital and she managed with the help of her son, Don. The discharge planner was the only one who ever told her that Ron was terminal and the planner did mention a hospice group nearby who could come to the house and help out.
She chose to go it alone with Don's help. Ronald was free of pain and managed to exercise a bit each day.
Don moved in with them for the remaining months and with his help she managed.
He went to work each day but she knew relief was at hand in the evening.
The doctor stopped by regularly to keep an eye on things. She despaired at trying to keep Ronald propped up in bed instead of sliding down so that his feet were uncomfortable pressed against the foot board. She devised a good plan to combat this; she kicked off her shoes, stood on the bed straddling him, then she carefully gripped under his arms and at the count of three, pulled him up in place. Worked beautifully. in their pre-illness days, she was tiny and he was tall and skinny so it conjures quite a picture.
She and Don had a reward for getting through the day. First,they got as much liquid nutrient into Ron as they could, then they settled him for sleep. When he was thoroughly asleep, they would cook a splendid diner, preceded by a healthy drink and play some Vivaldi; the music and the good food eased the tension from them.
Ron's bedsores forced her to send him to hospital for his final days and she regrets that she couldn't hang in that little bit longer. But again that's hindsight. She was probably emotionally and physically depleted and in need of more help.
Each family has its own need, whether it is for a temporary condition that is expected to be cured or whether it is for a terminal patient. Don't ever feel that you are going through this alone. There are answers out there for you. Ask your doctor, or call a visiting nurse association or speak to the hospital discharge planner.
And take notes.
continued in chapter 13: part 5
Wednesday, September 26, 2007
chapter 13: part 3 OPTIONS
continued from chapter 13: part 2
My friend Helen found out about Home Support quite by chance. She and her
children were clustered around Curt's hospital bed, and although he wasn't about to discuss the prospect that he might be dying, he indicated by subtle means that his time might be limited.
He said out loud, "Oh, I wish I could go home," just as the doctor walked in.
"Oh, honey, you know that isn't possible."
The doctor motioned her out into the hall.
"If you want to take Curt home, I can put you in the hands of people who will arrange it and it won't cost you. I'll see that you have all the support you need."
She felt a mixture of emotion. Yes, she dearly wanted him home so that he could die in the place he loved. Yet she was fearful because she had never seen death. She kept that emotion to herself and accepted the doctors offer of help.
They are the couple I mentioned before who lived in cottage country on a lake. It was arranged for a vising nurse to come in once a day, or more often, if it became necessary. A hospital bed was set up close the kitchen.
A Red Cross homemaker came once or twice a week to keep the house tidy. Helen learned she could even have had Meals on Wheels for herself and Curt but she declined this. She said he wasn't eating enough to justify it and she never thought of it in terms of herself, although she wasn't eating properly at all.
When she felt he was slipping away she arranged for a nurse to stay the night so that she could get some sleep, and this was the only expense for her. The government picked up half the cost.
Our country squabbles a lot about the cost of social Medicare but it is the only humane way.
Helen's one small regret was that despite the careful planning, Curt died quietly while she was in the next room.
"He was a private man," she said, "I think this was the way he wanted to go. He didn't call, there wasn't a sound."
continued in chapter 13:part 4
My friend Helen found out about Home Support quite by chance. She and her
children were clustered around Curt's hospital bed, and although he wasn't about to discuss the prospect that he might be dying, he indicated by subtle means that his time might be limited.
He said out loud, "Oh, I wish I could go home," just as the doctor walked in.
"Oh, honey, you know that isn't possible."
The doctor motioned her out into the hall.
"If you want to take Curt home, I can put you in the hands of people who will arrange it and it won't cost you. I'll see that you have all the support you need."
She felt a mixture of emotion. Yes, she dearly wanted him home so that he could die in the place he loved. Yet she was fearful because she had never seen death. She kept that emotion to herself and accepted the doctors offer of help.
They are the couple I mentioned before who lived in cottage country on a lake. It was arranged for a vising nurse to come in once a day, or more often, if it became necessary. A hospital bed was set up close the kitchen.
A Red Cross homemaker came once or twice a week to keep the house tidy. Helen learned she could even have had Meals on Wheels for herself and Curt but she declined this. She said he wasn't eating enough to justify it and she never thought of it in terms of herself, although she wasn't eating properly at all.
When she felt he was slipping away she arranged for a nurse to stay the night so that she could get some sleep, and this was the only expense for her. The government picked up half the cost.
Our country squabbles a lot about the cost of social Medicare but it is the only humane way.
Helen's one small regret was that despite the careful planning, Curt died quietly while she was in the next room.
"He was a private man," she said, "I think this was the way he wanted to go. He didn't call, there wasn't a sound."
continued in chapter 13:part 4
Tuesday, September 25, 2007
chapter 13: part 2 OPTIONS
continued from chapter 13: part 1
When we were early into Hal's illness and covering all eventualities,we did discuss euthanasia.
We were walking hand in hand during an early evening neighborhood stroll and We were into the "what-if's," which seemed remote then. I asked him whether he would want to get in a stock of lethal medication in case he ever suffered unmanageable pain, with no hope of relief. He agreed that he did wish this and we made a few preliminary enquiries about how it could be done. Hal preferred tablets of some kind and he said he would write an undated letter to keep with him which would act as a suicide note to keep his helpers out of the reaches of the law.
We kept it in the back of our minds but it seemed to be less and less important
as we struggled for living time. I know now that Hal would never have asked for those pills and as you'll learn in the next chapter, it was fortunate that I didn't have them on hand.
I had always believed that if anyone I loved was dying I would bring him home to die. This isn't always practical or workable and in Hal's case, his pain wasn't under control until the very last few days. If he had asked to come home, I would have found a way to arrange that.
Although in my heart I knew Hal's cancer would result in death, my soul could not grasp the concept and throughout his illness I struggled to emotionally prepare for his death.
Nowadays you read of groups of friends banding together to provide round-the-clock support to a terminally ill friend wishing to be at home. There are visiting
nurse programs, you can get advice by calling the cancer society and you can also sit down with the social worker if one is assigned to your partner.
My two support group friends who managed to have at-home care, said their spouses were relatively free from pain and were not hooked up to an intravenous, and that may be why I didn't seriously pursue this notion.
That and the fact that Hal never asked.
continued in chapter 13: part 3
When we were early into Hal's illness and covering all eventualities,we did discuss euthanasia.
We were walking hand in hand during an early evening neighborhood stroll and We were into the "what-if's," which seemed remote then. I asked him whether he would want to get in a stock of lethal medication in case he ever suffered unmanageable pain, with no hope of relief. He agreed that he did wish this and we made a few preliminary enquiries about how it could be done. Hal preferred tablets of some kind and he said he would write an undated letter to keep with him which would act as a suicide note to keep his helpers out of the reaches of the law.
We kept it in the back of our minds but it seemed to be less and less important
as we struggled for living time. I know now that Hal would never have asked for those pills and as you'll learn in the next chapter, it was fortunate that I didn't have them on hand.
I had always believed that if anyone I loved was dying I would bring him home to die. This isn't always practical or workable and in Hal's case, his pain wasn't under control until the very last few days. If he had asked to come home, I would have found a way to arrange that.
Although in my heart I knew Hal's cancer would result in death, my soul could not grasp the concept and throughout his illness I struggled to emotionally prepare for his death.
Nowadays you read of groups of friends banding together to provide round-the-clock support to a terminally ill friend wishing to be at home. There are visiting
nurse programs, you can get advice by calling the cancer society and you can also sit down with the social worker if one is assigned to your partner.
My two support group friends who managed to have at-home care, said their spouses were relatively free from pain and were not hooked up to an intravenous, and that may be why I didn't seriously pursue this notion.
That and the fact that Hal never asked.
continued in chapter 13: part 3
Monday, September 24, 2007
chapter 13: part 1 OPTIONS
continued from chapter 12: part 6
Every step of the way through your cancer, you have options open to you; what treatment you'll follow, which doctor you'll have, combining treatment with a special diet or exercise or relaxation programs, and in some cases when to continue treatment, and so on. All through this book we've discussed options.
This chapter is mostly for the caregiver. It's about choices that will have to be made if things start to go wrong.
Hal struggled to prolong his life day by day. He had this option. He could have chosen to give up the struggle and passively accept whatever happened. His deteriorating health prompted more choices for us to make.
As I got further into writing this book, I realized that we were well informed, really. Doctors were honest with us but couched their information with tact so that we could handle the rough spots.
With my 20/20 hindsight, I realize that when Hal and I were freely talking about the possibility of his dying, we virtually stopped there-- at the possibility that he might die. That was such a staggering concept that I never thought to take it a step further.
That was the ideal time to ask him whether he wanted a funeral, what kind, who to ask, whether he wanted cremation, where to scatter the ashes. In the early stages, when everything is unexplored territory, is the time to discuss death plans. Once the fight for life begins, the chance is lost.
We had been prudent enough to sign up with the Memorial Society years before and with my mania for orderly planning, I wrote a letter detailing how I wanted my body disposed of and the kind of send- off I'd like. Hal agreed that the letter was a good idea but never did this.
His mother, unbeknown to us, had made her arrangements through the Memorial Society and when she died at the age of ninety-five, our choices were so simple. She did ask for a funeral in the church, not a memorial service, but we fudged a little and didn't bring the coffin to the church.
continued in chapter 13: part 2
Every step of the way through your cancer, you have options open to you; what treatment you'll follow, which doctor you'll have, combining treatment with a special diet or exercise or relaxation programs, and in some cases when to continue treatment, and so on. All through this book we've discussed options.
This chapter is mostly for the caregiver. It's about choices that will have to be made if things start to go wrong.
Hal struggled to prolong his life day by day. He had this option. He could have chosen to give up the struggle and passively accept whatever happened. His deteriorating health prompted more choices for us to make.
As I got further into writing this book, I realized that we were well informed, really. Doctors were honest with us but couched their information with tact so that we could handle the rough spots.
With my 20/20 hindsight, I realize that when Hal and I were freely talking about the possibility of his dying, we virtually stopped there-- at the possibility that he might die. That was such a staggering concept that I never thought to take it a step further.
That was the ideal time to ask him whether he wanted a funeral, what kind, who to ask, whether he wanted cremation, where to scatter the ashes. In the early stages, when everything is unexplored territory, is the time to discuss death plans. Once the fight for life begins, the chance is lost.
We had been prudent enough to sign up with the Memorial Society years before and with my mania for orderly planning, I wrote a letter detailing how I wanted my body disposed of and the kind of send- off I'd like. Hal agreed that the letter was a good idea but never did this.
His mother, unbeknown to us, had made her arrangements through the Memorial Society and when she died at the age of ninety-five, our choices were so simple. She did ask for a funeral in the church, not a memorial service, but we fudged a little and didn't bring the coffin to the church.
continued in chapter 13: part 2
Friday, September 21, 2007
chapter 12:part 6
continued from chapter 12: part 5
After a few days as a patient at the cancer hospital the resident said Hal would be discharged that morning and then she murmured something about having to wait for test results before he could leave. We saw her every so often near the nursing station but she didn't come near us again. Literally, hours later, a nurse drifted in and said, "Oh, are you still here? Doctor signed you out."
That same resident told us earlier in the day that Hal would have to go to a lab near our home for blood work. We understood her to say that we were to ask the lab to pass on the test results by phone to the doctor’s office daily and we would continue the daily tests until they told us to stop. We were both clear that this is what she said.
Hal was suffering the after effects of chemo treatment and his legs were swollen. He’d shuffle painfully into the lab, excuse himself to go off to vomit, then submit to the test. Despite our directions, the lab mailed the results and we would have been there much longer if I hadn’t phoned the doctor’s secretary to ask her if this should be happening. The doctor was angry that the lab had ignored our request and mailed the results and he cancelled any further tests.
Better you should act like a parrot and before hospital discharge, repeat back to the doctor absolutely everything you have been told to do.
Despite your occasional misadventure, don't ever leave the hospital forgetting to thank the people who made this day possible. You will probably know the "regulars" by name and you will be aware of the many simple kindnesses from these busy people who do their best with so many people dependent on them.
REMINDER TO THE CAREGIVER
Prepare your own card of information for future hospital visits. It's also useful for trips to neighborhood medical labs. Never, never leave home without the bradma card.
Get that trip-to-the-hospital bag organized and place on top a list of the last-minute things to be packed. Any time you're heading for a hospital emergency room or even a clinic visit, take the bag along even if you don't think your partner will be admitted.
Make sure you bring any pain medication or medication that counts as must-have.
Learn when the doctor generally makes rounds and have your questions ready. Don't count on the patient to pass on information--be around to get it first-hand.
Bring in reading materials, knitting, letter-writing equipment, anything to pass the time.
Keep your questions short and succinct and listen carefully to the answers. Then write them down.
continued in chapter 13: part 1
After a few days as a patient at the cancer hospital the resident said Hal would be discharged that morning and then she murmured something about having to wait for test results before he could leave. We saw her every so often near the nursing station but she didn't come near us again. Literally, hours later, a nurse drifted in and said, "Oh, are you still here? Doctor signed you out."
That same resident told us earlier in the day that Hal would have to go to a lab near our home for blood work. We understood her to say that we were to ask the lab to pass on the test results by phone to the doctor’s office daily and we would continue the daily tests until they told us to stop. We were both clear that this is what she said.
Hal was suffering the after effects of chemo treatment and his legs were swollen. He’d shuffle painfully into the lab, excuse himself to go off to vomit, then submit to the test. Despite our directions, the lab mailed the results and we would have been there much longer if I hadn’t phoned the doctor’s secretary to ask her if this should be happening. The doctor was angry that the lab had ignored our request and mailed the results and he cancelled any further tests.
Better you should act like a parrot and before hospital discharge, repeat back to the doctor absolutely everything you have been told to do.
Despite your occasional misadventure, don't ever leave the hospital forgetting to thank the people who made this day possible. You will probably know the "regulars" by name and you will be aware of the many simple kindnesses from these busy people who do their best with so many people dependent on them.
REMINDER TO THE CAREGIVER
Prepare your own card of information for future hospital visits. It's also useful for trips to neighborhood medical labs. Never, never leave home without the bradma card.
Get that trip-to-the-hospital bag organized and place on top a list of the last-minute things to be packed. Any time you're heading for a hospital emergency room or even a clinic visit, take the bag along even if you don't think your partner will be admitted.
Make sure you bring any pain medication or medication that counts as must-have.
Learn when the doctor generally makes rounds and have your questions ready. Don't count on the patient to pass on information--be around to get it first-hand.
Bring in reading materials, knitting, letter-writing equipment, anything to pass the time.
Keep your questions short and succinct and listen carefully to the answers. Then write them down.
continued in chapter 13: part 1
Thursday, September 20, 2007
chapter 12:part 5
continued from chapter 12; part 4
When you know a complete change of scene is desperately needed and your partner is attached to an intravenous, then beg, borrow or demand one of those tiny poles that attach to a wheel chair, to handle the IV's. Then you can take your partner away for a while and if the weather is good, go outside to literally watch the grass grow.
One afternoon, after a change of shift that left only unknown nurses on hand, I simply had to get my depressed husband out for a while. Not one of the stranger-nurses would help me find the necessary pole. I was savvy enough to hurry down to the emergency department and there wasn't one pole was in evidence. I ended up struggling with the wheelchair while Hal pushed the tall pole on wheels in front of him. I held the elevator door open with one shoulder and shoved him into the elevator, but his chair stuck at the entrance and a passing visitor grabbed the pole before his intravenous ripped out of his arm. That tells you how desperate I was to get him outside for even a short while. He was remarkably quiet and slightly bemused at my desire.
Regrettably, all that effort failed us because I was upset both with the uncaring stranger-evening shift nurses and with what I might have done to cause him more physical distress.
My message to you is--prepare first. If you don't have all the equipment you need, use all your considerable ingenuity and charm to locate the missing pieces, or cancel that plan and re-think it for tomorrow.
Stick with the same hospital if you can. This is absolutely critical. Some of our acquaintances switched from one hospital Emergency department to another for anything serious that arose between doctor visits. That meant starting a new file and coping with new doctors. We had moved to the suburbs in the middle of Hal's illness, and despite the fact that it meant more travel time and there were three hospitals closer to us, we continued to drive the extra miles in order to maintain continuity, knowing that if he had to be admitted his regular doctor and his records were there. I felt he had gone through enough hands as it was, and didn't want to go back to point zero to start a new file in new territory and I wasn't about to involve a new and (to me) untested doctor at this stage.
Only once did we use a hospital other than our regular one, and that was the adjacent cancer hospital. Hal was suffering from painful complications and was admitted during his regular visit to the oncologist. I never got used to that hospital despite the serene setting and wonderfully considerate nurses. You 'd think he would see the oncologist more often by being on the premises but the fact is that the guy can't cope with a staggering case load in clinic and then take charge of his patients on the floors, so, out of necessity, his residents take over, under his supervision.
During that time, Hal saw his oncologist only once, which left us thirsting for information. Who do you ask? You keep encountering strangers.
continued in chapter 12: part 6
When you know a complete change of scene is desperately needed and your partner is attached to an intravenous, then beg, borrow or demand one of those tiny poles that attach to a wheel chair, to handle the IV's. Then you can take your partner away for a while and if the weather is good, go outside to literally watch the grass grow.
One afternoon, after a change of shift that left only unknown nurses on hand, I simply had to get my depressed husband out for a while. Not one of the stranger-nurses would help me find the necessary pole. I was savvy enough to hurry down to the emergency department and there wasn't one pole was in evidence. I ended up struggling with the wheelchair while Hal pushed the tall pole on wheels in front of him. I held the elevator door open with one shoulder and shoved him into the elevator, but his chair stuck at the entrance and a passing visitor grabbed the pole before his intravenous ripped out of his arm. That tells you how desperate I was to get him outside for even a short while. He was remarkably quiet and slightly bemused at my desire.
Regrettably, all that effort failed us because I was upset both with the uncaring stranger-evening shift nurses and with what I might have done to cause him more physical distress.
My message to you is--prepare first. If you don't have all the equipment you need, use all your considerable ingenuity and charm to locate the missing pieces, or cancel that plan and re-think it for tomorrow.
Stick with the same hospital if you can. This is absolutely critical. Some of our acquaintances switched from one hospital Emergency department to another for anything serious that arose between doctor visits. That meant starting a new file and coping with new doctors. We had moved to the suburbs in the middle of Hal's illness, and despite the fact that it meant more travel time and there were three hospitals closer to us, we continued to drive the extra miles in order to maintain continuity, knowing that if he had to be admitted his regular doctor and his records were there. I felt he had gone through enough hands as it was, and didn't want to go back to point zero to start a new file in new territory and I wasn't about to involve a new and (to me) untested doctor at this stage.
Only once did we use a hospital other than our regular one, and that was the adjacent cancer hospital. Hal was suffering from painful complications and was admitted during his regular visit to the oncologist. I never got used to that hospital despite the serene setting and wonderfully considerate nurses. You 'd think he would see the oncologist more often by being on the premises but the fact is that the guy can't cope with a staggering case load in clinic and then take charge of his patients on the floors, so, out of necessity, his residents take over, under his supervision.
During that time, Hal saw his oncologist only once, which left us thirsting for information. Who do you ask? You keep encountering strangers.
continued in chapter 12: part 6
Wednesday, September 19, 2007
chapter 12: part 4
continued from chapter 12: part 3
Once you're settled in the hospital room, you have to establish your own kind of routine for those hours spent in that tiny room. Everything is predicated on the doctor’s visits—that person is your pipeline. The first time Hal was admitted to hospital, I felt doubly stressed, dealing not only with what was happening to him but also by trying to find little nuggets of information from "outside" to bring in each day.
Eventually we found our own rhythm. If he felt well enough, he'd get the washing and shaving out of the way before I arrived and he always recognized the sound of my footsteps coming down the hall. I'd kiss him, we'd tell one another anything that was new, and I'd hand him the morning paper. Then, while he settled in with the newspaper, I'd take care of anything that required immediate attention, like collecting his personal laundry or re-arranging his pillows or straightening his sheets, or paying for another week of telephone and television rental. That man didn't just read the newspaper, he blotted up every word and he read me snippets of news while I knitted. I knitted like a woman possessed and every member of the family ended up with a sweater during those periods. In our own way, we found a domestic and comfortable routine.
We took daily walks up and down the corridor; Hal pushing his intravenous pole ahead of him and I tugging at his robe that we never could get on properly over his intravenous lines. Sometimes we sat in the small lounge to watch the baseball game, just for a change of scene. Patients who are more fit can roam about more, visiting the cafeteria, or at this particular hospital, sit out on the front lawn and get some sun.
Hal was a nut about personal hygiene, especially wanting clean hair and I shampooed him in some strange spots. The shower room was always my idea of instant hell. Despite the pleading hand-written notes on the wall, people did not take away their sopping bandages, band-aids, wet towels and stained nightshirts. Certainly the cleaners didn’t bother. God I hated that.
One thing about being a "regular"--you know the location of the valuable laundry cart. As I recall, it came to the floor once a day and that was that until the next day. Weekends were worse. The cart came to the floor on Friday and the next one wouldn’t be in until Monday. I learned to check out that cart in anticipation of a linen emergency and I always stashed an extra nightshirt in case of need.
continued in chapter 12: part 5
Once you're settled in the hospital room, you have to establish your own kind of routine for those hours spent in that tiny room. Everything is predicated on the doctor’s visits—that person is your pipeline. The first time Hal was admitted to hospital, I felt doubly stressed, dealing not only with what was happening to him but also by trying to find little nuggets of information from "outside" to bring in each day.
Eventually we found our own rhythm. If he felt well enough, he'd get the washing and shaving out of the way before I arrived and he always recognized the sound of my footsteps coming down the hall. I'd kiss him, we'd tell one another anything that was new, and I'd hand him the morning paper. Then, while he settled in with the newspaper, I'd take care of anything that required immediate attention, like collecting his personal laundry or re-arranging his pillows or straightening his sheets, or paying for another week of telephone and television rental. That man didn't just read the newspaper, he blotted up every word and he read me snippets of news while I knitted. I knitted like a woman possessed and every member of the family ended up with a sweater during those periods. In our own way, we found a domestic and comfortable routine.
We took daily walks up and down the corridor; Hal pushing his intravenous pole ahead of him and I tugging at his robe that we never could get on properly over his intravenous lines. Sometimes we sat in the small lounge to watch the baseball game, just for a change of scene. Patients who are more fit can roam about more, visiting the cafeteria, or at this particular hospital, sit out on the front lawn and get some sun.
Hal was a nut about personal hygiene, especially wanting clean hair and I shampooed him in some strange spots. The shower room was always my idea of instant hell. Despite the pleading hand-written notes on the wall, people did not take away their sopping bandages, band-aids, wet towels and stained nightshirts. Certainly the cleaners didn’t bother. God I hated that.
One thing about being a "regular"--you know the location of the valuable laundry cart. As I recall, it came to the floor once a day and that was that until the next day. Weekends were worse. The cart came to the floor on Friday and the next one wouldn’t be in until Monday. I learned to check out that cart in anticipation of a linen emergency and I always stashed an extra nightshirt in case of need.
continued in chapter 12: part 5
Tuesday, September 18, 2007
chapter 12: part 3
continued from chapter 12: part 2
Always keep a pre-packed bag on hand for those unplanned hospital visits. Our bag contained essential toiletries such as a favorite brand of soap, wet or dry shampoos, deodorants and writing materials, a must for inveterate note-takers. Tuck in a couple of pairs of summer pyjamas, which are softer than hospital issue and help prevent chafing. The short-style legs are especially useful under those regulation gowns when you want to take a stroll down the hall. On top of the bag I kept a list of the things that couldn't be pre-packed such as Hal's razor and medication and my last job was to snatch up the newest reading materials including that day's newspaper.
If Hal was due for pain medication the attending doctor was always willing to let him take his own rather than waste time ordering it and waiting for it to arrive. It had to be taken every three hours and he wasn't about to tamper with his temporary success. Of course, on hospital territory, you don't take anything without checking with the doctor first.
Be sure to bring something to fight boredom. Think you can't get bored during a medical emergency? Well you can. Almost invariably, Hal would perk up within an hour of arrival; it was temporary, but he felt fine. Once the crisis was over and he was more comfortable, we'd wait for his file to arrive, then for someone to take him for X-Rays or whatever test was necessary and after that we'd wait for test results. Then, he was usually admitted and we had to wait for a bed. And wait. That's why I say bring something along to alleviate boredom. A deck of cards, your Ipod, books, magazines,whatever. It will also help keep your mind off some of the situations surrounding you.
You're now in the same building with the people who know about your illness and somewhere nearby is your doctor and the resident doctors. This is your chance to really communicate, right? Well, not necessarily.
Although we found the nurses unfailing friendly and helpful, we knew that
our best chance to get any information was from the doctor, who generally made rounds at the same time each day. Hal's doctor came by twice a day and once I understood the system, I made a point of being there for at least one of those visits. The reason this is important is that you can't always rely on the patient to pass on news--sometimes they're medicated out of their minds and they will have forgotten anything they learned, or they prefer to forget what they did hear.
This is especially important when your partner is about to be discharged. Once when we were still new at this, Hal assured them he had lots of morphine at home when he had only a small amount. Believe me, trying to round up morphine at six o'clock in the morning is not something you want to do twice.
On each ward there is a front desk clerk who maintains the day-to-day business, such as passing on messages, delivery of flowers to rooms, taking phone calls from people checking on a patient's condition. If your partner is having a bad day and doesn't want visitors, tell the clerk and stress it's a one-day- only message. The clerk is your valuable link with the outside world.
Sometimes Hal was placed in a four-bed ward and sometimes a semi-private. A lot depended on the space available and the number of staff for that area. Less depended on whether we carried the appropriate medical insurance. Most of Hal's room mates were pleasant people, and some were off the wall, but he wasn't too concerned because he didn't rely on them for company. After all, they were not there by choice and few of them had the energy to make a new acquaintance. He knew I would be with him for most of the day. I still recall his delight, though, when he once had a reasonably healthy roommate who loved playing cribbage as much as he did. I failed him there-I cannot stand the game.
The cleaning staff has a set of rules I never did fathom. I saw the same lady every day and she loved getting a shine to the floors but she didn't care much if there was dirt under the shine.
Don't bring a lot of stuff into the room because it has to leave with you. Hal settled for a couple of snapshots on the bedside table, with his books, notepads and list of phone numbers tucked away in the drawer. I brought him a bud vase with a frequently replaced rose; it provided color and still left room for the water jug and telephone.
If your partner has spent a long time in the same spot in the same room, staring at the same wall, it's inevitable that he'll be depressed. During one of Hal's more lengthy stays, he was placed in a semi-private room with his bed close to the door. It was a tiny, cheerless room; roommates came and went and we simply endured the sameness until I finally realized we were losing all semblance of control. There wasn't much we could do to take charge of our lives, but we could at least move the bed across the room, next to the window. Or so I thought.
A couple of times after a roommate departed, I asked a nurse to move him, but she was obviously busy and made excuses, ultimately leaving him where he was, feeling bored and depressed. Finally, the next time a roommate departed, I politely but forcefully made the same request of an obviously overloaded nurse who decently and kindly took the trouble and extra effort to move him, all the while soothing me with reasons why she believed he should be moved. He then got a slice of sky and a view of pigeons sitting on the roof and more space, because the window ledge handled the overflow of books cards and flowers. To be honest, I don't think he cared much by that time; but it made a difference to me.
continued in chapter 12: part 4
Always keep a pre-packed bag on hand for those unplanned hospital visits. Our bag contained essential toiletries such as a favorite brand of soap, wet or dry shampoos, deodorants and writing materials, a must for inveterate note-takers. Tuck in a couple of pairs of summer pyjamas, which are softer than hospital issue and help prevent chafing. The short-style legs are especially useful under those regulation gowns when you want to take a stroll down the hall. On top of the bag I kept a list of the things that couldn't be pre-packed such as Hal's razor and medication and my last job was to snatch up the newest reading materials including that day's newspaper.
If Hal was due for pain medication the attending doctor was always willing to let him take his own rather than waste time ordering it and waiting for it to arrive. It had to be taken every three hours and he wasn't about to tamper with his temporary success. Of course, on hospital territory, you don't take anything without checking with the doctor first.
Be sure to bring something to fight boredom. Think you can't get bored during a medical emergency? Well you can. Almost invariably, Hal would perk up within an hour of arrival; it was temporary, but he felt fine. Once the crisis was over and he was more comfortable, we'd wait for his file to arrive, then for someone to take him for X-Rays or whatever test was necessary and after that we'd wait for test results. Then, he was usually admitted and we had to wait for a bed. And wait. That's why I say bring something along to alleviate boredom. A deck of cards, your Ipod, books, magazines,whatever. It will also help keep your mind off some of the situations surrounding you.
You're now in the same building with the people who know about your illness and somewhere nearby is your doctor and the resident doctors. This is your chance to really communicate, right? Well, not necessarily.
Although we found the nurses unfailing friendly and helpful, we knew that
our best chance to get any information was from the doctor, who generally made rounds at the same time each day. Hal's doctor came by twice a day and once I understood the system, I made a point of being there for at least one of those visits. The reason this is important is that you can't always rely on the patient to pass on news--sometimes they're medicated out of their minds and they will have forgotten anything they learned, or they prefer to forget what they did hear.
This is especially important when your partner is about to be discharged. Once when we were still new at this, Hal assured them he had lots of morphine at home when he had only a small amount. Believe me, trying to round up morphine at six o'clock in the morning is not something you want to do twice.
On each ward there is a front desk clerk who maintains the day-to-day business, such as passing on messages, delivery of flowers to rooms, taking phone calls from people checking on a patient's condition. If your partner is having a bad day and doesn't want visitors, tell the clerk and stress it's a one-day- only message. The clerk is your valuable link with the outside world.
Sometimes Hal was placed in a four-bed ward and sometimes a semi-private. A lot depended on the space available and the number of staff for that area. Less depended on whether we carried the appropriate medical insurance. Most of Hal's room mates were pleasant people, and some were off the wall, but he wasn't too concerned because he didn't rely on them for company. After all, they were not there by choice and few of them had the energy to make a new acquaintance. He knew I would be with him for most of the day. I still recall his delight, though, when he once had a reasonably healthy roommate who loved playing cribbage as much as he did. I failed him there-I cannot stand the game.
The cleaning staff has a set of rules I never did fathom. I saw the same lady every day and she loved getting a shine to the floors but she didn't care much if there was dirt under the shine.
Don't bring a lot of stuff into the room because it has to leave with you. Hal settled for a couple of snapshots on the bedside table, with his books, notepads and list of phone numbers tucked away in the drawer. I brought him a bud vase with a frequently replaced rose; it provided color and still left room for the water jug and telephone.
If your partner has spent a long time in the same spot in the same room, staring at the same wall, it's inevitable that he'll be depressed. During one of Hal's more lengthy stays, he was placed in a semi-private room with his bed close to the door. It was a tiny, cheerless room; roommates came and went and we simply endured the sameness until I finally realized we were losing all semblance of control. There wasn't much we could do to take charge of our lives, but we could at least move the bed across the room, next to the window. Or so I thought.
A couple of times after a roommate departed, I asked a nurse to move him, but she was obviously busy and made excuses, ultimately leaving him where he was, feeling bored and depressed. Finally, the next time a roommate departed, I politely but forcefully made the same request of an obviously overloaded nurse who decently and kindly took the trouble and extra effort to move him, all the while soothing me with reasons why she believed he should be moved. He then got a slice of sky and a view of pigeons sitting on the roof and more space, because the window ledge handled the overflow of books cards and flowers. To be honest, I don't think he cared much by that time; but it made a difference to me.
continued in chapter 12: part 4
Monday, September 17, 2007
chapter 12: part 2
continued from chapter 12: part 1
I was determined to stay with Hal as much as possible throughout each new experience and I was usually able to do this by being aware of what was happening around us. Rule number one is to keep quiet and out of the way of anyone tending to your partner. In return you are freeing the nurses to deal with other patients while you keep a close bedside watch.
Probably the last time we were in Emergency, Hal was in a cubicle near the back of the room. The other cubicles were occupied by men with alarming looking sores, pallor, pain. The entire gamut. I recall thinking this must be what hell is like, but I wasn’t emotionally enmeshed, just distantly maintaining my little bit of sanity. I remember the doctor walking from pallet to pallet, pretty well saying the same thing to each one. “Well, your cancer has accelerated but we will make you as comfortable as we can.”
When I was new at this I trustingly believed that there was only one way, the hospital way, on the premise that it's their turf and they probably know the best way to do things, but I did eventually learn one or two short cuts without destroying my credibility as a sensible partner.
The time I recall most vividly was when I brought Hal in suffering pain that we suspected meant his by-pass surgery was no longer working. He had taken extra morphine for the pain and was disoriented by the time I got him into the car. He told me later that he was hallucinating and believed I was driving the 401 highway going the wrong direction from the rest of the traffic. He "saw" huge transport trucks barrelling toward us and was in shock when we arrived at the hospital.
I drew up to the Emergency entrance, pushed and pulled him into a wheelchair, parked the car illegally and rushed back to him. I hurriedly wheeled him to the clerk's desk and the woman didn't bother to look up, just sighed and murmured, "Just a minute," and kept on diddling with her computer. She has every reason to be grateful that a counter and window separated us. I was still in my obey-the-rules mode, and I had it in my mind that if I didn't check in with the clerk first that no one would help us. Despite this belief, I spun the chair around and rushed him through into the department, calling out to the first nurse I saw. He was barely conscious by then and three nurses quickly converged and began to work on him. When I was satisfied he was all right for the present and I felt damned good and ready, I returned to check him in. That was our only bad time; staff allow for the fact that most people coming through those doors are upset and often in a hurry.
continued in chapter 12: part 3
I was determined to stay with Hal as much as possible throughout each new experience and I was usually able to do this by being aware of what was happening around us. Rule number one is to keep quiet and out of the way of anyone tending to your partner. In return you are freeing the nurses to deal with other patients while you keep a close bedside watch.
Probably the last time we were in Emergency, Hal was in a cubicle near the back of the room. The other cubicles were occupied by men with alarming looking sores, pallor, pain. The entire gamut. I recall thinking this must be what hell is like, but I wasn’t emotionally enmeshed, just distantly maintaining my little bit of sanity. I remember the doctor walking from pallet to pallet, pretty well saying the same thing to each one. “Well, your cancer has accelerated but we will make you as comfortable as we can.”
When I was new at this I trustingly believed that there was only one way, the hospital way, on the premise that it's their turf and they probably know the best way to do things, but I did eventually learn one or two short cuts without destroying my credibility as a sensible partner.
The time I recall most vividly was when I brought Hal in suffering pain that we suspected meant his by-pass surgery was no longer working. He had taken extra morphine for the pain and was disoriented by the time I got him into the car. He told me later that he was hallucinating and believed I was driving the 401 highway going the wrong direction from the rest of the traffic. He "saw" huge transport trucks barrelling toward us and was in shock when we arrived at the hospital.
I drew up to the Emergency entrance, pushed and pulled him into a wheelchair, parked the car illegally and rushed back to him. I hurriedly wheeled him to the clerk's desk and the woman didn't bother to look up, just sighed and murmured, "Just a minute," and kept on diddling with her computer. She has every reason to be grateful that a counter and window separated us. I was still in my obey-the-rules mode, and I had it in my mind that if I didn't check in with the clerk first that no one would help us. Despite this belief, I spun the chair around and rushed him through into the department, calling out to the first nurse I saw. He was barely conscious by then and three nurses quickly converged and began to work on him. When I was satisfied he was all right for the present and I felt damned good and ready, I returned to check him in. That was our only bad time; staff allow for the fact that most people coming through those doors are upset and often in a hurry.
continued in chapter 12: part 3
Friday, September 14, 2007
Chapter 12: part 1
continued from chapter 11: part 6
Your introduction to the hospital system will begin either by way of the Admitting or Emergency departments. Hal's admissions always began hurriedly through the Emergency department and the good news is that you will have experienced staff on hand. Emergency patients generally go to the head of line for X-Rays and other tests, but the-not-so-good news is that there will still be delays and they can be maddening. Each patient is on a priority list for care so you wait, and in a perverse way, it's encouraging to know that there are others ahead of you with more urgent needs.
There won't be a bed immediately available if your partner is to be admitted; you can pretty well bet the farm on that. So, while you watch him struggling to get comfortable on that hard pallet, your mind plays tricks with you about what's happening to the person who is currently occupying the bed you're waiting for.
No matter how you make your entrance, you will begin with the admitting clerk and you will part with a lot of information in return for your bradma, a plastic card that you must present each time you come in. The bradma is keyed into your file in the computer, and you will be required to give the same information already on the file to ensure that everything you told them before is unchanged. Even if you've been in and out a dozen times, the clerk will start from scratch, asking you for exactly the same information.
What you've read so far gives you an inkling of what to expect on your first visit and now it's time to prepare in case of need for a second or more visits. Take a few minutes and rough out on a file card everything you might be asked such as your full name, address, phone number, next of kin, and then type or print the information neatly on a file card. You'll also need the family doctor's name, address and phone number, which is not something etched into my memory. Also the name and address of the oncologist or surgeon or whoever else as involved in your ongoing care. Next time, simply hand over the card and let the clerk verify the information from there. This simple act will guarantee a healthy drop in your blood pressure.
continued in chapter 12: part 2
Your introduction to the hospital system will begin either by way of the Admitting or Emergency departments. Hal's admissions always began hurriedly through the Emergency department and the good news is that you will have experienced staff on hand. Emergency patients generally go to the head of line for X-Rays and other tests, but the-not-so-good news is that there will still be delays and they can be maddening. Each patient is on a priority list for care so you wait, and in a perverse way, it's encouraging to know that there are others ahead of you with more urgent needs.
There won't be a bed immediately available if your partner is to be admitted; you can pretty well bet the farm on that. So, while you watch him struggling to get comfortable on that hard pallet, your mind plays tricks with you about what's happening to the person who is currently occupying the bed you're waiting for.
No matter how you make your entrance, you will begin with the admitting clerk and you will part with a lot of information in return for your bradma, a plastic card that you must present each time you come in. The bradma is keyed into your file in the computer, and you will be required to give the same information already on the file to ensure that everything you told them before is unchanged. Even if you've been in and out a dozen times, the clerk will start from scratch, asking you for exactly the same information.
What you've read so far gives you an inkling of what to expect on your first visit and now it's time to prepare in case of need for a second or more visits. Take a few minutes and rough out on a file card everything you might be asked such as your full name, address, phone number, next of kin, and then type or print the information neatly on a file card. You'll also need the family doctor's name, address and phone number, which is not something etched into my memory. Also the name and address of the oncologist or surgeon or whoever else as involved in your ongoing care. Next time, simply hand over the card and let the clerk verify the information from there. This simple act will guarantee a healthy drop in your blood pressure.
continued in chapter 12: part 2
Thursday, September 13, 2007
chapter 11: part 6
continued from chapter 11: part 5
I have a special fondness for day shift nurses. They are allowed to use first names now, though that changes every few years back to formal, and then back to informal. They were busy, terribly busy, but they always found time to be human and leave a feeling behind that they truly cared.
Hal had only two bad experiences. One nurse, one of the weekend night stranger/nurses, was present when he was having agonizing pain, which the doctor thought might be a kinked bowel. He asked for more morphine and she accused him of being addicted to the morphine and dishonest about the pain.
She was gone when I came in the next morning and I couldn't get enough information about her to formally complain. When he told me about it he had tears in his eyes; he was helpless and she made him feel inadequate. She had no right. I hope to god she is out of the profession. She should be.
The second nurse was the most competent person I saw; she knew every piece of machinery and how to keep it working, she knew how to change a bed while causing the least discomfort and she was also the coldest zombie I've ever encountered. She did not smile at patients, only at residents. I came into the room one day when Hal had asked her to help lift him out of the chair. She stood in front of him, motionless. He reached forward and put his hands on her shoulders.
"Don't put your hands there, you'll hurt my back," she snapped
Then she then brusquely lifted him up and propelled him to the bed and marched out of the room. Not one word about how they should get the job done as a team.
One night, actually at two in the morning, Hal's roommate was sitting up in bed reading because he couldn't sleep and in walked the Zombie. She knew this patient was an economist and using her normal strident voice began a litany of questions about her investments. Hal waited a couple of minutes and then asked for silence and she immediately left the room. The roommate called his thanks over the curtain and said he wasn't in the mood for a discussion either.
It took me a long time to realize she was another member of the medical profession who hates, simply hates, caring for terminally ill patients, and she lets them know of her dislike. There are a lot of them; but bless the ones who understand the dying.
There is generally a nice balance between doctor visits and nursing care, although they may not agree with me. The doctor is not there all the time and I assume maintains his objectivity while the nurse has valuable input if she is allowed to provide it.
Some had an even more special gift and when one of those would enter the room Hal would visibly brighten and say,
"Oh, hi, I didn't realize your time off was over; welcome back."
I found my way into his chart because, for a few mornings I'd arrive and Hal wasn't washed and his teeth hadn't been brushed so I helped him get this done; from then on that was my job. That was okay and I was glad to help, but as he got weaker, I found it tougher to get him on his feet and over to the bathroom, with his intravenous pole trailing behind. And I sure as hell wasn't going to ask the frosty nurse to help me. Between us, we contrived ways to get this done. Bed baths are the pits and we did our best to avoid them. There was one attendant to handle the shaving, and he had a way of appearing when I was struggling to lift Hal onto his feet and he’d gently take over. He was a nice man.
The trick is to separate the doctor from the myth; this person has chosen a field of study that takes time; he saturates himself with the information he needs but he doesn't heal by magic; he follows the rules and often the machinery kick starts back into action on its own.
My favorite back-to-reality manoeuvre was to imagine them walking through the corridors wearing the hospital issue nightshirt, minus ties and the floppy paper slippers. Keep that in your memory and you'll bring the doctor down several pegs so that you're now eye to eye.
Now that I don't have much to do with doctors, because I'm well, I realize I got sucked into the doctor-is-god syndrome. I am convinced that they know their craft and they are nevertheless sometimes stumped, and whatever the outcome rests more with the patient's attitude than anything else.
I will remember with love the surgeon who through happenstance became Hal's major doctor during the last phase of his life along one particular resident and I will always treasure the memory of the open caring and competence of those overworked nurses.
And for my own good, I am back to thinking of doctors as human beings who have a lot in common with plumbers.
continued in chapter 12; part 1
I have a special fondness for day shift nurses. They are allowed to use first names now, though that changes every few years back to formal, and then back to informal. They were busy, terribly busy, but they always found time to be human and leave a feeling behind that they truly cared.
Hal had only two bad experiences. One nurse, one of the weekend night stranger/nurses, was present when he was having agonizing pain, which the doctor thought might be a kinked bowel. He asked for more morphine and she accused him of being addicted to the morphine and dishonest about the pain.
She was gone when I came in the next morning and I couldn't get enough information about her to formally complain. When he told me about it he had tears in his eyes; he was helpless and she made him feel inadequate. She had no right. I hope to god she is out of the profession. She should be.
The second nurse was the most competent person I saw; she knew every piece of machinery and how to keep it working, she knew how to change a bed while causing the least discomfort and she was also the coldest zombie I've ever encountered. She did not smile at patients, only at residents. I came into the room one day when Hal had asked her to help lift him out of the chair. She stood in front of him, motionless. He reached forward and put his hands on her shoulders.
"Don't put your hands there, you'll hurt my back," she snapped
Then she then brusquely lifted him up and propelled him to the bed and marched out of the room. Not one word about how they should get the job done as a team.
One night, actually at two in the morning, Hal's roommate was sitting up in bed reading because he couldn't sleep and in walked the Zombie. She knew this patient was an economist and using her normal strident voice began a litany of questions about her investments. Hal waited a couple of minutes and then asked for silence and she immediately left the room. The roommate called his thanks over the curtain and said he wasn't in the mood for a discussion either.
It took me a long time to realize she was another member of the medical profession who hates, simply hates, caring for terminally ill patients, and she lets them know of her dislike. There are a lot of them; but bless the ones who understand the dying.
There is generally a nice balance between doctor visits and nursing care, although they may not agree with me. The doctor is not there all the time and I assume maintains his objectivity while the nurse has valuable input if she is allowed to provide it.
Some had an even more special gift and when one of those would enter the room Hal would visibly brighten and say,
"Oh, hi, I didn't realize your time off was over; welcome back."
I found my way into his chart because, for a few mornings I'd arrive and Hal wasn't washed and his teeth hadn't been brushed so I helped him get this done; from then on that was my job. That was okay and I was glad to help, but as he got weaker, I found it tougher to get him on his feet and over to the bathroom, with his intravenous pole trailing behind. And I sure as hell wasn't going to ask the frosty nurse to help me. Between us, we contrived ways to get this done. Bed baths are the pits and we did our best to avoid them. There was one attendant to handle the shaving, and he had a way of appearing when I was struggling to lift Hal onto his feet and he’d gently take over. He was a nice man.
The trick is to separate the doctor from the myth; this person has chosen a field of study that takes time; he saturates himself with the information he needs but he doesn't heal by magic; he follows the rules and often the machinery kick starts back into action on its own.
My favorite back-to-reality manoeuvre was to imagine them walking through the corridors wearing the hospital issue nightshirt, minus ties and the floppy paper slippers. Keep that in your memory and you'll bring the doctor down several pegs so that you're now eye to eye.
Now that I don't have much to do with doctors, because I'm well, I realize I got sucked into the doctor-is-god syndrome. I am convinced that they know their craft and they are nevertheless sometimes stumped, and whatever the outcome rests more with the patient's attitude than anything else.
I will remember with love the surgeon who through happenstance became Hal's major doctor during the last phase of his life along one particular resident and I will always treasure the memory of the open caring and competence of those overworked nurses.
And for my own good, I am back to thinking of doctors as human beings who have a lot in common with plumbers.
continued in chapter 12; part 1
Wednesday, September 12, 2007
chapter 11: part 5
continued from chapter 11: part 4
Hal's nurses were for the most part, young and gentle. They bantered with him and seemed caring.
And then there was the weekend staff. Most weekends were a horror; the nurses were passive to the point I thought they had all been lobotomized. They clustered about the front desk as much as possible, seemingly to keep as far away from patients as possible. They wouldn't make the simplest decision without checking with the doctor, which they were afraid to do.
For instance, there was the GOT A PASS FOR THE DAY incident I will always remember. Hal was beginning to stabilize from a painful episode; he was off the intravenous and the doctor encouraged me to take him away for a day. Wonderful. We would do this on Sunday. I planned to take him home for a few minutes to see the things he missed and then we would drive north to Mark's lakeside home, where other family members were gathering for our usual next round of birthdays for that month.
This was pretty exciting stuff. Hal was a little apprehensive because his world was becoming the hospital and I believed the outside would be good for him. I arrived early in the morning and a weekend stranger\nurse announced in a disinterested voice,
"You can't take him away until the nurse comes to take a blood specimen."
" Okay, where is she? Can you call her? "
" No, there is just one nurse and she is working her way through the floors."
We were on the top floor. She appeared at eleven o'clock, drew the blood and announced we couldn't leave until the test results were received. I explained the rush and she said she would do her best to have it checked for us so we could go. At noon I returned to the front desk for the umpteenth time and asked if the test results had come back yet. The nurse languidly glanced at his chart and said,
"Why yes, they're here. You can go now."
Did that test matter? I doubt it. Was there anyone there to interpret the meaning of the test? Not on your life. It was the weekend. The day was half gone before we left. I still feel the rage and frustration when I think of this. I couldn't find a resident to clear the logjam so I simply waited and seethed. Learn from my error. If you have a pass, use it and get the hell out of there.
Hal did see the house for a few minutes, which turned out to be the last time and I hurried him along because the family had been waiting for him since morning.
Frankly I needed this break. He didn’t. He would have been happy to remain at the house. He arrived at the lake feeling weary having passed up on lunch. We helped him into a chair and he ate one of Olga's famous breaded chicken wings. Then the pain began. Not the fault of Olga's wings. By three o'clock he was in a lot of pain and I hurriedly returned him to the hospital where he vomited violently for hours. The blockage was causing further problems and we were now reaching a critical stage in his illness. How sad thing that his last day out of there was spoiled.
Let me save you from this experience. First, when the doctor offers the pass or you request it, you tell him exactly what you have in mind and what time frame you are looking at, with an emphasis on the departure time. Then you ask him if there is any reason that there might be a delay in leaving.
If you come for your sweetie, as I did, and you hit this snag, then demand to see the doctor, the resident and if they are not forthcoming, tell them the test/treatment/ hold-up will have to wait until you return and then you leave. Vamoose. Split.
continued in chapter 11: part 6
Hal's nurses were for the most part, young and gentle. They bantered with him and seemed caring.
And then there was the weekend staff. Most weekends were a horror; the nurses were passive to the point I thought they had all been lobotomized. They clustered about the front desk as much as possible, seemingly to keep as far away from patients as possible. They wouldn't make the simplest decision without checking with the doctor, which they were afraid to do.
For instance, there was the GOT A PASS FOR THE DAY incident I will always remember. Hal was beginning to stabilize from a painful episode; he was off the intravenous and the doctor encouraged me to take him away for a day. Wonderful. We would do this on Sunday. I planned to take him home for a few minutes to see the things he missed and then we would drive north to Mark's lakeside home, where other family members were gathering for our usual next round of birthdays for that month.
This was pretty exciting stuff. Hal was a little apprehensive because his world was becoming the hospital and I believed the outside would be good for him. I arrived early in the morning and a weekend stranger\nurse announced in a disinterested voice,
"You can't take him away until the nurse comes to take a blood specimen."
" Okay, where is she? Can you call her? "
" No, there is just one nurse and she is working her way through the floors."
We were on the top floor. She appeared at eleven o'clock, drew the blood and announced we couldn't leave until the test results were received. I explained the rush and she said she would do her best to have it checked for us so we could go. At noon I returned to the front desk for the umpteenth time and asked if the test results had come back yet. The nurse languidly glanced at his chart and said,
"Why yes, they're here. You can go now."
Did that test matter? I doubt it. Was there anyone there to interpret the meaning of the test? Not on your life. It was the weekend. The day was half gone before we left. I still feel the rage and frustration when I think of this. I couldn't find a resident to clear the logjam so I simply waited and seethed. Learn from my error. If you have a pass, use it and get the hell out of there.
Hal did see the house for a few minutes, which turned out to be the last time and I hurried him along because the family had been waiting for him since morning.
Frankly I needed this break. He didn’t. He would have been happy to remain at the house. He arrived at the lake feeling weary having passed up on lunch. We helped him into a chair and he ate one of Olga's famous breaded chicken wings. Then the pain began. Not the fault of Olga's wings. By three o'clock he was in a lot of pain and I hurriedly returned him to the hospital where he vomited violently for hours. The blockage was causing further problems and we were now reaching a critical stage in his illness. How sad thing that his last day out of there was spoiled.
Let me save you from this experience. First, when the doctor offers the pass or you request it, you tell him exactly what you have in mind and what time frame you are looking at, with an emphasis on the departure time. Then you ask him if there is any reason that there might be a delay in leaving.
If you come for your sweetie, as I did, and you hit this snag, then demand to see the doctor, the resident and if they are not forthcoming, tell them the test/treatment/ hold-up will have to wait until you return and then you leave. Vamoose. Split.
continued in chapter 11: part 6
Tuesday, September 11, 2007
chapter 11; part 4
continued from chapter 11: part 3
I can see why the god complex overcomes some doctors. A hospital is like no other place on earth; it has the hushed, though busy atmosphere of a temple. Doctors spend so much time there that they don't have a healthy dose of reality outside. It must take a special kind of spouse who can handle some of those egos and value the real person inside.
Some doctors have a special agenda like collecting statistics about the various patients, or performing various surgical techniques and so on, but what they don't really want to do is cross over that impersonal line and relate to the patients. Bless the ones who have learned to enjoy balancing that line.
I used to wonder what was going on in their heads when they clustered around Hal's bed, asking him questions about his condition when Hal was flying on morphine. Did they think they were getting the facts or didn't it matter anymore? Are they aware that a heavily doped patient is rambling and often hallucinating? I tried to remain quiet and give Hal his dignity but sometimes I would take his hand and say, "I think the morphine is speaking for you honey." And I’d quickly respond for him.
Emergency departments are generally staffed with people who have had critical care training and they make swift but expert opinions. Our whole experience began in emergency departments and I always felt a sense of relief when Hal was in their care. Someone would know what to do.
The best diagnostician of the bunch was one doctor we encountered a couple of times in our hurried visits; he turned out to be completely accurate about what was happening although his opinions were discounted at first when I took Hal to his regular clinic a day or so later.
The last time we went to Emergency, Hal's favorite resident, Dr. Walker, came to check him. Dr. Walker greeted him and said to the nurse, "Mr. Tennant and I are pals." Now, that isn't an earth-shaking statement but that made Hal's visit almost a pleasure and he felt this man cared about him and what was happening to him. It's damned important when you are getting a glimmer that things are beginning to wind down and there isn't much you or anyone else can do about it.
Hal's illness coincided with that seven-year syndrome, a shortage of nursing staff. I was aware of this because of the hospital work I used to do, and I took their short-handedness into consideration.
The nurses in emergency were generally breezy and informative and thrived on the fact that they wouldn't be stuck with any one patient for any length of time. There aren't that many nurses who endure in a setting of long term care patients but the ones who do deserve a special medal.
continued in chapter 11; part 5
I can see why the god complex overcomes some doctors. A hospital is like no other place on earth; it has the hushed, though busy atmosphere of a temple. Doctors spend so much time there that they don't have a healthy dose of reality outside. It must take a special kind of spouse who can handle some of those egos and value the real person inside.
Some doctors have a special agenda like collecting statistics about the various patients, or performing various surgical techniques and so on, but what they don't really want to do is cross over that impersonal line and relate to the patients. Bless the ones who have learned to enjoy balancing that line.
I used to wonder what was going on in their heads when they clustered around Hal's bed, asking him questions about his condition when Hal was flying on morphine. Did they think they were getting the facts or didn't it matter anymore? Are they aware that a heavily doped patient is rambling and often hallucinating? I tried to remain quiet and give Hal his dignity but sometimes I would take his hand and say, "I think the morphine is speaking for you honey." And I’d quickly respond for him.
Emergency departments are generally staffed with people who have had critical care training and they make swift but expert opinions. Our whole experience began in emergency departments and I always felt a sense of relief when Hal was in their care. Someone would know what to do.
The best diagnostician of the bunch was one doctor we encountered a couple of times in our hurried visits; he turned out to be completely accurate about what was happening although his opinions were discounted at first when I took Hal to his regular clinic a day or so later.
The last time we went to Emergency, Hal's favorite resident, Dr. Walker, came to check him. Dr. Walker greeted him and said to the nurse, "Mr. Tennant and I are pals." Now, that isn't an earth-shaking statement but that made Hal's visit almost a pleasure and he felt this man cared about him and what was happening to him. It's damned important when you are getting a glimmer that things are beginning to wind down and there isn't much you or anyone else can do about it.
Hal's illness coincided with that seven-year syndrome, a shortage of nursing staff. I was aware of this because of the hospital work I used to do, and I took their short-handedness into consideration.
The nurses in emergency were generally breezy and informative and thrived on the fact that they wouldn't be stuck with any one patient for any length of time. There aren't that many nurses who endure in a setting of long term care patients but the ones who do deserve a special medal.
continued in chapter 11; part 5
Monday, September 10, 2007
chapter 11: part 3
continued from chapter 11: part 2
An often-voiced complaint from all of us in the support group was--- If we miss the doctor's visit to the room, how do we get current information? I never felt that the doctors we dealt with were lazy or incompetent; they simply couldn't take the time to relay messages to caregivers and this is where some sort of interventionist is needed.
I envisioned a medical data keeper. I would phone this person, Hal's file would flash on the screen and then I could say, for instance, "Listen, I requested a sedative for Hal yesterday because he felt so depressed, but the dosage is so strong that he sits in a chair with his eyes rolling up into his head and it took me two hours to get some food into him. He still needs a little dulling of the emotional stress and I missed the doctor's visit so what should I do?"
The nurses haven't time to feed him or even check to see if he is eating. If I'm not there when the doctor comes in, I'll never know what is happening and I couldn't rely on Hal for information, since he could be forgetful because of the large doses of morphine.
“Tell the nurses,” you say. I do, and it's duly noted in the charting but when will any information funnel back to me?
I want that clearinghouse person. Sometimes we feel desperate about what we should be doing and we need direction.
I never had the heart to call the doctor for a recap because I could see the amount of work he was trying to handle. I did call his secretary if I ran into problems at home with Hal and I was always careful to give concise descriptions of the problem; and those people are wonderful. They learn to tell who has an immediate problem and what can wait.
The head nurses at Princess Margaret hospital would take calls from worried caregivers and I will be grateful to them for the rest of my life. I’d rehearse the problem, then call and get one nurse who would listen carefully and either say, “bring him in, “ or make a suggestion about settling the problem at least for the night.
Most hospitals give out post -operative sheets of information to take home and that‘s good. You’ve had some of your colon removed, so you might expect some problems while you are healing and you can re-check the discharge sheet.
Some patients are advised to work through the family doctor while they are recuperating but I refused to take that route. I was able to avoid that because Hal’s surgeon arranged for regular follow-up visits and then eventually we did have the Oncologist. I just don't believe you can get the best for your partner if you are working between too many medical people. If you live out of town, away from the specialist, then you haven't any choice.
I did some serious strolling past the nursing station while Hal's doctor was chatting with the nurses; it was important to me that he treated them like the professionals they were.
Only once once did I encounter in the hospital one of these autocratic I-am-god doctors, filling in for Hal's doctor over a weekend. You could hear him the minute he got off the elevator and onto the floor. He didn't walk into the rooms, just stood in each doorway, shouting at each patient as though those objects in the beds were all missing their ears. His style was downright rude and insulting with the nurses, never looking them in the eye when he spoke and to their credit, the nurses did not take this out on the patients. Did we complain on their behalf? Who would we tell, if we dared?
continued in chapter 11: part 4
An often-voiced complaint from all of us in the support group was--- If we miss the doctor's visit to the room, how do we get current information? I never felt that the doctors we dealt with were lazy or incompetent; they simply couldn't take the time to relay messages to caregivers and this is where some sort of interventionist is needed.
I envisioned a medical data keeper. I would phone this person, Hal's file would flash on the screen and then I could say, for instance, "Listen, I requested a sedative for Hal yesterday because he felt so depressed, but the dosage is so strong that he sits in a chair with his eyes rolling up into his head and it took me two hours to get some food into him. He still needs a little dulling of the emotional stress and I missed the doctor's visit so what should I do?"
The nurses haven't time to feed him or even check to see if he is eating. If I'm not there when the doctor comes in, I'll never know what is happening and I couldn't rely on Hal for information, since he could be forgetful because of the large doses of morphine.
“Tell the nurses,” you say. I do, and it's duly noted in the charting but when will any information funnel back to me?
I want that clearinghouse person. Sometimes we feel desperate about what we should be doing and we need direction.
I never had the heart to call the doctor for a recap because I could see the amount of work he was trying to handle. I did call his secretary if I ran into problems at home with Hal and I was always careful to give concise descriptions of the problem; and those people are wonderful. They learn to tell who has an immediate problem and what can wait.
The head nurses at Princess Margaret hospital would take calls from worried caregivers and I will be grateful to them for the rest of my life. I’d rehearse the problem, then call and get one nurse who would listen carefully and either say, “bring him in, “ or make a suggestion about settling the problem at least for the night.
Most hospitals give out post -operative sheets of information to take home and that‘s good. You’ve had some of your colon removed, so you might expect some problems while you are healing and you can re-check the discharge sheet.
Some patients are advised to work through the family doctor while they are recuperating but I refused to take that route. I was able to avoid that because Hal’s surgeon arranged for regular follow-up visits and then eventually we did have the Oncologist. I just don't believe you can get the best for your partner if you are working between too many medical people. If you live out of town, away from the specialist, then you haven't any choice.
I did some serious strolling past the nursing station while Hal's doctor was chatting with the nurses; it was important to me that he treated them like the professionals they were.
Only once once did I encounter in the hospital one of these autocratic I-am-god doctors, filling in for Hal's doctor over a weekend. You could hear him the minute he got off the elevator and onto the floor. He didn't walk into the rooms, just stood in each doorway, shouting at each patient as though those objects in the beds were all missing their ears. His style was downright rude and insulting with the nurses, never looking them in the eye when he spoke and to their credit, the nurses did not take this out on the patients. Did we complain on their behalf? Who would we tell, if we dared?
continued in chapter 11: part 4
Friday, September 7, 2007
chapter 11: part 2
continued from chapter 11: part 1
Even if you have an upfront doctor who has figured out how much information you want, you'll need to go over the information more than once. Those 40-45% statistics they tossed our way occupied my mind so completely I didn't always recall the rest of the discussion. This is why I suggested that you keep a log of your doctor chats and medication. You'll be able to discuss your partner's illness more knowledgeably and you'll be considered a sensible person wanting answers. You can make notes immediately after speaking with the doctor so that you can review it later.
This is your chart and it’s every bit as valuable as that thick stack of papers your doctor and nurses refer to.
All of my compatriots said that while they thought they had absorbed everything the doctor said in a stressful situation such as reporting after a major operation, they couldn't recall much later. There is a strong need for the information to be given at least twice and we should be writing it down.
I used to fantasise about a medical ombudsman/translator who would step in at each doctor visit to review what just took place.
Get to know your doctor. That insensitive fill-in doctor who bluntly told us that Hal he would be dead within two years left us shaken. We asked for the truth but he seemed to delight in presenting it as cruelly as possible.He had the option of giving us the truth but also could have told us that there were things to be done to extend Hal's life. Instead, he was so desensitized that he no longer cared about his patients.
Just because doctors and nurses deal with death constantly doesn't mean they're any better at dealing with it than us civilians. And, they have the promise that one of those testing programs will prove to be positive.
Time and again, when I asked my support group caregivers about the good and bad to do with their partners' illness, they complained about the length of time taken to diagnose the illness. They couldn’t understand why, since they gave the doctors notice that something was terribly wrong.
They never felt the doctor understood the urgency. I didn't hear of one case of immediate diagnosis or that the cancer was found in a general check-up. I'm sure it happens. There was a lingering anger that the original doctor didn't get more expert opinions sooner but I remember how much was involved before Hal's colon cancer was diagnosed.
My friend Berry' story says it all. Ronald had been successfully operated on for renal cancer five years previously. Then he began getting headaches which struck more frequently with time and were rapidly reaching the unbearable stage.
Ron went to the family doctor and as usual, he insisted on going without her. The doctor sent him on to a prominent neurologist who did many tests and found nothing. He was handed prescriptions for Tylenol Three and she said the frequent tests with no conclusion just wore him down.
Eight months after his first complaint Berry went to see the family doctor and said to him,
"Look, I can't help what the tests show; this man has a brain tumor and you've got to do something."
She and Ron never doubted that he had a tumor and her urgent meeting with the family doctor finally broke the log-jam. The family doctor passed on her concerns to the specialist, who then passed on the message that he would do an angiogram, a procedure of injecting dye to the brain followed by X-ray. He warned that it was a dangerous procedure and she found that grimly amusing since she was watching her husband slowly waste away with pain and fatigue. The test revealed a tumor, by then too large to remove completely, but the doctor decided to operate because the headaches would be relieved, and they were.
Berry couldn't help wondering whether the tumor was treatable a year ago when they first asked for help. She met the specialist for the first and last time immediately after operation. She used her family doctor as the go-between because it seemed at the time to be the best way for her and she was feeling some of the mystique of the specialist with the power of life and death.
Ron didn't suffer pain after the surgery and consequently he never used the prescription for morphine that he took home from the hospital. He didn't have any further tests while at the hospital. He was terribly weak although his abilities were not diminished as a result of the brain surgery.
Shortly after his discharge, he was instructed to go to the local hospital to see his doctor for a post-op check up. Berry waited in the car in the parking lot at his request and he slowly shuffled inside. Shortly after, she was surprised to see the doctor threading his way through the parked cars to find her. He told her that Ron was being admitted because of his general exhaustion and weakness and lack of appetite. This is where the communication broke down again. The doctor told Ron, when Berry was not present, that traces of cancer were showing in the liver. They told him but not her. Ron later told her and then, says Berry, he seemed to give up after that.
That wasn't the only shock she received. She didn’t know that he was already considered terminal until she sat down with the discharge planner when Ron was about to leave the hospital. The planner asked her what help she would have at home and it dawned on her what the real question was--can you handle his dying on your own?
"I could have called the doctor right away to get that clarified, " said Berry, "but damn it, I just felt the hell with them, we'll manage on our own. I'd always been told I was a strong person and that I could stand on my own two feet. I just felt if I lost control I would howl."
See why I say we need our intervention specialist? Berry desperately needed one person who could keep track and keep her informed. Granted, she might have handled things better, but you're looking at a distraught woman who is trying to keep her balance while her world shifts.
continued in chapter 11: part 3
Even if you have an upfront doctor who has figured out how much information you want, you'll need to go over the information more than once. Those 40-45% statistics they tossed our way occupied my mind so completely I didn't always recall the rest of the discussion. This is why I suggested that you keep a log of your doctor chats and medication. You'll be able to discuss your partner's illness more knowledgeably and you'll be considered a sensible person wanting answers. You can make notes immediately after speaking with the doctor so that you can review it later.
This is your chart and it’s every bit as valuable as that thick stack of papers your doctor and nurses refer to.
All of my compatriots said that while they thought they had absorbed everything the doctor said in a stressful situation such as reporting after a major operation, they couldn't recall much later. There is a strong need for the information to be given at least twice and we should be writing it down.
I used to fantasise about a medical ombudsman/translator who would step in at each doctor visit to review what just took place.
Get to know your doctor. That insensitive fill-in doctor who bluntly told us that Hal he would be dead within two years left us shaken. We asked for the truth but he seemed to delight in presenting it as cruelly as possible.He had the option of giving us the truth but also could have told us that there were things to be done to extend Hal's life. Instead, he was so desensitized that he no longer cared about his patients.
Just because doctors and nurses deal with death constantly doesn't mean they're any better at dealing with it than us civilians. And, they have the promise that one of those testing programs will prove to be positive.
Time and again, when I asked my support group caregivers about the good and bad to do with their partners' illness, they complained about the length of time taken to diagnose the illness. They couldn’t understand why, since they gave the doctors notice that something was terribly wrong.
They never felt the doctor understood the urgency. I didn't hear of one case of immediate diagnosis or that the cancer was found in a general check-up. I'm sure it happens. There was a lingering anger that the original doctor didn't get more expert opinions sooner but I remember how much was involved before Hal's colon cancer was diagnosed.
My friend Berry' story says it all. Ronald had been successfully operated on for renal cancer five years previously. Then he began getting headaches which struck more frequently with time and were rapidly reaching the unbearable stage.
Ron went to the family doctor and as usual, he insisted on going without her. The doctor sent him on to a prominent neurologist who did many tests and found nothing. He was handed prescriptions for Tylenol Three and she said the frequent tests with no conclusion just wore him down.
Eight months after his first complaint Berry went to see the family doctor and said to him,
"Look, I can't help what the tests show; this man has a brain tumor and you've got to do something."
She and Ron never doubted that he had a tumor and her urgent meeting with the family doctor finally broke the log-jam. The family doctor passed on her concerns to the specialist, who then passed on the message that he would do an angiogram, a procedure of injecting dye to the brain followed by X-ray. He warned that it was a dangerous procedure and she found that grimly amusing since she was watching her husband slowly waste away with pain and fatigue. The test revealed a tumor, by then too large to remove completely, but the doctor decided to operate because the headaches would be relieved, and they were.
Berry couldn't help wondering whether the tumor was treatable a year ago when they first asked for help. She met the specialist for the first and last time immediately after operation. She used her family doctor as the go-between because it seemed at the time to be the best way for her and she was feeling some of the mystique of the specialist with the power of life and death.
Ron didn't suffer pain after the surgery and consequently he never used the prescription for morphine that he took home from the hospital. He didn't have any further tests while at the hospital. He was terribly weak although his abilities were not diminished as a result of the brain surgery.
Shortly after his discharge, he was instructed to go to the local hospital to see his doctor for a post-op check up. Berry waited in the car in the parking lot at his request and he slowly shuffled inside. Shortly after, she was surprised to see the doctor threading his way through the parked cars to find her. He told her that Ron was being admitted because of his general exhaustion and weakness and lack of appetite. This is where the communication broke down again. The doctor told Ron, when Berry was not present, that traces of cancer were showing in the liver. They told him but not her. Ron later told her and then, says Berry, he seemed to give up after that.
That wasn't the only shock she received. She didn’t know that he was already considered terminal until she sat down with the discharge planner when Ron was about to leave the hospital. The planner asked her what help she would have at home and it dawned on her what the real question was--can you handle his dying on your own?
"I could have called the doctor right away to get that clarified, " said Berry, "but damn it, I just felt the hell with them, we'll manage on our own. I'd always been told I was a strong person and that I could stand on my own two feet. I just felt if I lost control I would howl."
See why I say we need our intervention specialist? Berry desperately needed one person who could keep track and keep her informed. Granted, she might have handled things better, but you're looking at a distraught woman who is trying to keep her balance while her world shifts.
continued in chapter 11: part 3
Thursday, September 6, 2007
chapter 11; part 1 The Medical Profession
continued from chapter 10: part 7
And now a word or two about the medical profession. Face it people, they need us as much as we need them, so we have to co-exist. Without us they have no work and without them, we're up the proverbial creek.
I had lots of time to study the people who were a large part of my life for a year and a half. Between trips to the emergency department and five hospital admissions, studying the medical profession became my vocation.
Let’s begin with doctors and now that I'm smarter, I suggest it’s best that we think of them as mechanics or plumbers. You place the malfunctioning equipment in their hands and trust they'll get it running again. How they get the machinery going is something you're never completely clear about but who cares as long as they get the job done.
Just don't ask for a warranty.
The first lesson I learned is that doctors will patiently answer your questions but that’s not the point; the trick is to know what to ask. We branch off into two camps here—the ones who want to know everything versus the ones wanting selective information. If you want total upfront reporting, say so clearly. Consider the doctor’s dilemma- you can find yourself playing an adult version of Go fish if you don’t specify where you stand.
My friend Rachael slowly learned that of the three doctors who cared for Evan, the urologist was the one who had the least problem communicating the truth to her. In the beginning the surgeons believed Evan had diverticulitis and were shocked during surgery to discover three tumors. She learned later that one doctor assisting at his surgery didn't think it was worthwhile to even try to remove any of it. Later, when they picked up his most recent X- rays to take to another doctor, Rachael peeked inside the envelope and that’s how they learned his cancer had metastasised to his liver. The doctors simply couldn't either bring themselves to tell her or they played that game, "But I thought you told her."
Despite the fact that I asked for the facts and believed I was absorbing them, near the end I wasn't comprehending that soon I'd wake up and Hal would be gone from my life. I hadn’t had any experience with the dying process and it wasn’t getting through to me. That explains why, when the Emergency room doctor told me that Hal's cancer had seeded itself to the abdominal wall causing Hal’s severe pain, it sounded perfectly rational; but if he had said, "your husbands body is riddled with cancer", I might have faced it more quickly, but I learned.
continued in chapter 11: part 2
And now a word or two about the medical profession. Face it people, they need us as much as we need them, so we have to co-exist. Without us they have no work and without them, we're up the proverbial creek.
I had lots of time to study the people who were a large part of my life for a year and a half. Between trips to the emergency department and five hospital admissions, studying the medical profession became my vocation.
Let’s begin with doctors and now that I'm smarter, I suggest it’s best that we think of them as mechanics or plumbers. You place the malfunctioning equipment in their hands and trust they'll get it running again. How they get the machinery going is something you're never completely clear about but who cares as long as they get the job done.
Just don't ask for a warranty.
The first lesson I learned is that doctors will patiently answer your questions but that’s not the point; the trick is to know what to ask. We branch off into two camps here—the ones who want to know everything versus the ones wanting selective information. If you want total upfront reporting, say so clearly. Consider the doctor’s dilemma- you can find yourself playing an adult version of Go fish if you don’t specify where you stand.
My friend Rachael slowly learned that of the three doctors who cared for Evan, the urologist was the one who had the least problem communicating the truth to her. In the beginning the surgeons believed Evan had diverticulitis and were shocked during surgery to discover three tumors. She learned later that one doctor assisting at his surgery didn't think it was worthwhile to even try to remove any of it. Later, when they picked up his most recent X- rays to take to another doctor, Rachael peeked inside the envelope and that’s how they learned his cancer had metastasised to his liver. The doctors simply couldn't either bring themselves to tell her or they played that game, "But I thought you told her."
Despite the fact that I asked for the facts and believed I was absorbing them, near the end I wasn't comprehending that soon I'd wake up and Hal would be gone from my life. I hadn’t had any experience with the dying process and it wasn’t getting through to me. That explains why, when the Emergency room doctor told me that Hal's cancer had seeded itself to the abdominal wall causing Hal’s severe pain, it sounded perfectly rational; but if he had said, "your husbands body is riddled with cancer", I might have faced it more quickly, but I learned.
continued in chapter 11: part 2
Wednesday, September 5, 2007
chapter 10 : part 7 Gift Suggestions
continued from chapter 10: part 6
There were some things I would have liked for Hal's comfort but I never had time to track them down and hospitals seldom have more than one of the extras.
Egg crate mattresses topper. Made of soft foam or water-filled plastic, these mattresses prevent sharp bones coming in contact with a standard hospital mattress.
Sheepskin cover. Meant to lie on, with or without the egg crate mattress. Acts as a buffer between the body and the mattress.
Soft pillows.Down-filled pillows are perfect, but anything soft will do. I learned to tuck pillows of various shapes and sizes around Hal for optimum comfort.
Books. If you’re not sure what the patient has read, bring along a catalogue from a book store or the latest book review sections from the newspaper and let him choose.
If your patient is a voracious reader, offer to do a weekly library run.
Sheepskin booties, for want of a better word. They prevent the feet from chafing against each other.
Fruit and flowers. These old stand-by’s are fine, although you might check about allergies first. Hal’s favorite flower arrangement was a dramatic arrangement of Birds of Paradise and they lasted for a long time.
You can look into bringing DVD movies in or the patent's favorite music. find out what equipment the hospital finds acceptable
I'm sure a lot has changed since I made this list but I am certain these items are still needed.
continued in chapter 11: part 1
There were some things I would have liked for Hal's comfort but I never had time to track them down and hospitals seldom have more than one of the extras.
Egg crate mattresses topper. Made of soft foam or water-filled plastic, these mattresses prevent sharp bones coming in contact with a standard hospital mattress.
Sheepskin cover. Meant to lie on, with or without the egg crate mattress. Acts as a buffer between the body and the mattress.
Soft pillows.Down-filled pillows are perfect, but anything soft will do. I learned to tuck pillows of various shapes and sizes around Hal for optimum comfort.
Books. If you’re not sure what the patient has read, bring along a catalogue from a book store or the latest book review sections from the newspaper and let him choose.
If your patient is a voracious reader, offer to do a weekly library run.
Sheepskin booties, for want of a better word. They prevent the feet from chafing against each other.
Fruit and flowers. These old stand-by’s are fine, although you might check about allergies first. Hal’s favorite flower arrangement was a dramatic arrangement of Birds of Paradise and they lasted for a long time.
You can look into bringing DVD movies in or the patent's favorite music. find out what equipment the hospital finds acceptable
I'm sure a lot has changed since I made this list but I am certain these items are still needed.
continued in chapter 11: part 1
Tuesday, September 4, 2007
chapter 10: part 6
continued from chapter 10: part 5
We returned to our new house feeling exhausted but looking forward to settling in.
I busily set myself to unpacking, threading my way through the furniture to put things away. Blame it on the tiredness, but I stepped over Hal three times before I realized he was stretched out on the narrow corridor floor, since the bed wasn’t together as yet and he was beyond uncomfortable. I found the bed and the bedding and got him settled. His condition worsened during the day and evening.
The next morning, I packed him into the car and drove him to the emergency room back in our old neighborhood. His blockage had indeed re-occurred and he was admitted for further surgery, this time to do a by-pass of the old surgical site. This was considered palliative surgery; it was intended to make him more comfortable, at least for a while.
Early on the morning of Hal’s surgery, I dressed to prepare the drive to the hospital ; I was frightened and sobbing to myself. I had enough sense to know I had to get myself into a better frame of mind before I left for the hospital, so I pushed past the debris and settled in my favorite chair. When my body felt as relaxed as it was possible to be, I said to that inner light I knew looked after me, "Look, this operation is terribly serious and Hal has been warned there may be complications; what kind of strength can I bring to put him in the best frame of mind for this?"
The answer was short and sweet-- sing. Had I just been short-circuited? There isn’t anyone anywhere who will tell you that I should be encouraged to so much as hum. All right then, I’ll sing. But what? “Oklahoma” came into my head and I don’t know any words past the second line. Fake it. I began to sing at the top of my lungs and quickly the shaky sobs disappeared and the voice got stronger if not prettier.
I dialled the phone to reach Hal.
“Sweetheart, I can’t explain before I get down there, but there is something you must do immediately. Trust me. You must sing, you can sing in your head only but you must sing, and the tune I’m using is Oklahoma.'
He took this very well and promised to begin right away while I prepared to join him.
When I arrived at the hospital he had already been sedated, and as I approached his bed he waggled a finger back and forth and mouthed the words to the song. We sat together, holding hands and humming, mouthing the words we knew, until the porter came to wheel him away. He was smiling and his eyes were twinkling as he left.
His incision healed quickly and he was released in six days. My faithful inner friend had helped again.
Back at the new house I had to cope with deliveries of appliances, then wait for people to hook them up and the usual snafus when people didn’t deliver when promised. I shamelessly called on friends and relatives and they all pitched in without a whimper. This way, I could spend as much time as possible with Hal, and we were now about fifteen miles further from the hospital.
continued in chapter 10: part 7
We returned to our new house feeling exhausted but looking forward to settling in.
I busily set myself to unpacking, threading my way through the furniture to put things away. Blame it on the tiredness, but I stepped over Hal three times before I realized he was stretched out on the narrow corridor floor, since the bed wasn’t together as yet and he was beyond uncomfortable. I found the bed and the bedding and got him settled. His condition worsened during the day and evening.
The next morning, I packed him into the car and drove him to the emergency room back in our old neighborhood. His blockage had indeed re-occurred and he was admitted for further surgery, this time to do a by-pass of the old surgical site. This was considered palliative surgery; it was intended to make him more comfortable, at least for a while.
Early on the morning of Hal’s surgery, I dressed to prepare the drive to the hospital ; I was frightened and sobbing to myself. I had enough sense to know I had to get myself into a better frame of mind before I left for the hospital, so I pushed past the debris and settled in my favorite chair. When my body felt as relaxed as it was possible to be, I said to that inner light I knew looked after me, "Look, this operation is terribly serious and Hal has been warned there may be complications; what kind of strength can I bring to put him in the best frame of mind for this?"
The answer was short and sweet-- sing. Had I just been short-circuited? There isn’t anyone anywhere who will tell you that I should be encouraged to so much as hum. All right then, I’ll sing. But what? “Oklahoma” came into my head and I don’t know any words past the second line. Fake it. I began to sing at the top of my lungs and quickly the shaky sobs disappeared and the voice got stronger if not prettier.
I dialled the phone to reach Hal.
“Sweetheart, I can’t explain before I get down there, but there is something you must do immediately. Trust me. You must sing, you can sing in your head only but you must sing, and the tune I’m using is Oklahoma.'
He took this very well and promised to begin right away while I prepared to join him.
When I arrived at the hospital he had already been sedated, and as I approached his bed he waggled a finger back and forth and mouthed the words to the song. We sat together, holding hands and humming, mouthing the words we knew, until the porter came to wheel him away. He was smiling and his eyes were twinkling as he left.
His incision healed quickly and he was released in six days. My faithful inner friend had helped again.
Back at the new house I had to cope with deliveries of appliances, then wait for people to hook them up and the usual snafus when people didn’t deliver when promised. I shamelessly called on friends and relatives and they all pitched in without a whimper. This way, I could spend as much time as possible with Hal, and we were now about fifteen miles further from the hospital.
continued in chapter 10: part 7
Monday, September 3, 2007
chapter 10: part 5
continued from chapter 10: part 4
The inn we booked into had so much wrong with it that you’ll think I invented this, but every word is true. We were directed to a room that hadn’t been made up, and the tables were littered with dirty cups and overflowing ashtrays. We skipped the idea of room service and went back to the desk to get that straightened out.
That’s when we learned they did not have a dining room let alone room service. What they had was proximity to a restaurant next door, so we tramped across the snow to join a wildly enthusiastic Friday night crowd. We were so tired that one drink and barbecued brochette shrimps tasted just fine and we headed off to our room feeling much better.
At two in the morning Hal called the front desk to ask if the people on the other side of our adjoining door could be asked to stop the partying and douse the cigarettes. The door was far from airtight. At seven o’clock I called the front desk and politely told the man he had five minutes to clear that room or I would stand in the hallway and scream, "Fire!" at the top of my lungs. The party ended in three minutes and twelve seconds.
We decided we’d had enough and wearily dressed, skipping showers because there were two tiny hand towels and no face cloths and by that time we stopped caring. There was also one coat hanger in the closet. The sounds through the walls of flushing toilets and thundering bath water was just another irritant.
As we prepared to leave, I wrote DUST ME on the television and as the final insult, I found an empty cupcake paper and wad of gum left by some other happy camper in the drawer of the bedside table.
I roughed out a stinging letter to the manager, but in all the moving-in confusion the letter was never mailed.
Too bad. The manager probably thinks he/she is adequate.
continued in chapter 10: part 6
The inn we booked into had so much wrong with it that you’ll think I invented this, but every word is true. We were directed to a room that hadn’t been made up, and the tables were littered with dirty cups and overflowing ashtrays. We skipped the idea of room service and went back to the desk to get that straightened out.
That’s when we learned they did not have a dining room let alone room service. What they had was proximity to a restaurant next door, so we tramped across the snow to join a wildly enthusiastic Friday night crowd. We were so tired that one drink and barbecued brochette shrimps tasted just fine and we headed off to our room feeling much better.
At two in the morning Hal called the front desk to ask if the people on the other side of our adjoining door could be asked to stop the partying and douse the cigarettes. The door was far from airtight. At seven o’clock I called the front desk and politely told the man he had five minutes to clear that room or I would stand in the hallway and scream, "Fire!" at the top of my lungs. The party ended in three minutes and twelve seconds.
We decided we’d had enough and wearily dressed, skipping showers because there were two tiny hand towels and no face cloths and by that time we stopped caring. There was also one coat hanger in the closet. The sounds through the walls of flushing toilets and thundering bath water was just another irritant.
As we prepared to leave, I wrote DUST ME on the television and as the final insult, I found an empty cupcake paper and wad of gum left by some other happy camper in the drawer of the bedside table.
I roughed out a stinging letter to the manager, but in all the moving-in confusion the letter was never mailed.
Too bad. The manager probably thinks he/she is adequate.
continued in chapter 10: part 6
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