For a good part of this year that is ending in a few hours, I was googly about a man who was obviously googly about me. He would frequently lose his train of thought when speaking to me or stop mid-sentence and stare at me or just be utterly confused in my presence. I hadn't experienced that kind of behavior for more than a decade. It was so sweet, so thrilling, so intriguing.
Of course, the cards were stacked high to the ceiling against us: He is 10 years younger than me, he is or was married (halfway through the year he stopped wearing his wedding ring), he and I have a professional relationship, and I'm a dialysis patient. I spent an awful lot of time thinking about him and fantasizing about him during the first 10 months of 2009.
But in the last few months something switched off. I still enjoy seeing him and talking with him, but I realize nothing will ever happen, and with that knowledge has come peace. Now I rarely think of him, and when I do, it's for practical reasons, not to indulge in some never-neverland dreaming.
A few times during the last few weeks, I have returned to an old ritual, talking aloud, as if to a lover, when I bed down at night. And when I went to the movies this afternoon, I closed my eyes for a moment and imagined my love--whoever and wherever he may be--sitting next to me, holding my hand, and smiling. May 2010 will be the year when that man appears in the flesh.
Thursday, December 31, 2009
If Only They Would Talk to One Another
Finally, I can begin to see a light at the end of the tunnel. At my monthly clinic visit, I complained to my nephrologist about my weakness, fatigue, drum-tight legs, distended stomach, shortness of breath, and upwelling of fluids into my chest cavity. His solution was to increase the amount of dialysis solution I would be carrying inside me during the day from two liters to 2.5. Well, this sure did not help. Not only did the extra fluid not drain the excess fluids from my body, it accentuated the shortness of breath and oppressive sense of fullness in my diaphragm.
Dr. Mai, my acupuncturist, had been treating me, but could not put needles in my right leg because it was so tight and so painful. When I decided to go back to two liters of solution, Dr. Mai gave me an herbal formula to reduce the swelling. Wow, has it been great! My urination has more than doubled, my right leg is quickly approaching the size of the left leg, and I am no longer plagued by shortness of breath and the oppressive feeling that I could not breathe because of the crowding out of my lungs with the excess fluid.
This is a dramatic example of the need for communication between doctors and alternative health practitioners. Boy, if only doctors and acupunturists could work together on a plan of treatment. Had I continued to follow the Western medical approach and not sought help from my acupuncturist, I really would have been in an awful place. As it is, I am beginning to feel an influx of energy, a lightness in my step.
In large measure, I owe what health and vitality I have to acupuncture. How few dialysis patients are receiving acupuncture treatments. Indeed, acupuncture is not even on their radar screens. I am so thankful that acupuncture is a weekly or even twice-weekly part of my overall health strategy. I would be in sorry shape if I only relied on conventional medicine for help.
Dr. Mai, my acupuncturist, had been treating me, but could not put needles in my right leg because it was so tight and so painful. When I decided to go back to two liters of solution, Dr. Mai gave me an herbal formula to reduce the swelling. Wow, has it been great! My urination has more than doubled, my right leg is quickly approaching the size of the left leg, and I am no longer plagued by shortness of breath and the oppressive feeling that I could not breathe because of the crowding out of my lungs with the excess fluid.
This is a dramatic example of the need for communication between doctors and alternative health practitioners. Boy, if only doctors and acupunturists could work together on a plan of treatment. Had I continued to follow the Western medical approach and not sought help from my acupuncturist, I really would have been in an awful place. As it is, I am beginning to feel an influx of energy, a lightness in my step.
In large measure, I owe what health and vitality I have to acupuncture. How few dialysis patients are receiving acupuncture treatments. Indeed, acupuncture is not even on their radar screens. I am so thankful that acupuncture is a weekly or even twice-weekly part of my overall health strategy. I would be in sorry shape if I only relied on conventional medicine for help.
Saturday, December 26, 2009
The Image vs. the Reality
A few months ago, Aaron and I attended a conference for dialysis patients. Approximately 400 people were in attendance. At one point in the keynote speaker's address, she asked for a show of hands to her question, "How many of you have people in your life who assumed you were incapable of doing things that you were actually quite capable of doing?" Most everyone raised his or her hand. Not me. I actually deal with the opposite situation: friends who must believe my life has changed very little since the onset of dialysis, who believe that I can still do everything I always used to do and more.
On one hand, this says a great deal about how I present myself to the world. I don't focus on limitations and make a point of doing as much as I possibly can for myself. People see me as vibrant, strong, and full of life, and I am grateful for their positive vision of me.
On the other hand, it seems odd that my friends have such a dim idea of what this huge part of my life entails. It would be as if a friend didn't know I was single, or if she didn't know I had a child or that I worked as a writer. It's similar to how many people have said to me over the years that diabetes is "just avoiding candy." Wow, if only that were true! That would be easy. It's how it attacks every organ and every tissue of the body that's the difficult part.
Last summer my friend Araia, who lives in rural northeastern Washington state, said I should visit her. We could float on inner tubes down the river that serves as one of her property lines, she said, not realizing that, though this sounds idyllic, it's no longer possible. Any water activity besides a shower is verboten, since any contact with water carries with it the high possibility of infection through the exit site for the tubing that emerges from my abdomen.
Last week my friend Helene in Nova Scotia asked me if I'd like to go to New Zealand with her. Helene is an Air Canada retiree and has lifetime discount tickets. Plus, she has a friend on the North Island with whom we could stay. I have always wanted to go to New Zealand and was thrilled with this plan. I emailed my globe-trotting, always-up-for-an-adventure friend Heather, who took a year to explore the South Pacific. Though Heather's travels were 12 years ago, I still wanted her tips on kiwi journeys. She enthusiastically wrote back that by all means I should hitchhike as it is totally safe and completely acceptable. Like Araia's plan of floating down a river, this, too, sounds quite romantic and adventuresome, but is completely impossible. The dialysis machine weighs about 35 pounds, and the supplies I need for nightly dialysis weigh another 30 pounds--that's 30 pounds every day! Hitchhiking would only be possible if a U-Haul were following me.
So, though I appreciate Araia's and Heather's image of me as someone who can do anything, I began making a mental list of all the things that are no longer possible with dialysis. They fall into three categories: hygienic, logistical, and aesthetic.
Hygienic--Anything that involves water is out. (I am, thank goodness, allowed to shower, but this does not involve submersion.) Canoing, kayaking, water skiing, surfing, swimming, jacuzzi-ing, inner tubing, bathing. Anything that involves dirty conditions, as the environment in which I hook up to the dialysis machine and cap off in the morning must be as free of germs and dirt as possible. This would mean having a closed-off room in which to conduct dialysis, a room without open windows, ceiling fans, A/C, blowing heaters, animals. No putting down a sleeping bag on someone's living room floor.
Logistical--Travel is limited to personal automobile (in which to lug around all my dialysis solution and other equipment) or staying at one location (such as a resort, hotel, or friend's house). Travel by any other means is not feasible--train, bicycle, foot, boat, horse or other pack animal. No late-night events or all-night events. (Last night, for example, I was a party-pooper, saying no to a 7 p.m. movie, as I had to be home by 9:30 to hook up.) No spontaneous trips, esp. any that involve flying, as arrangements for the shipment of supplies must be made six weeks in advance for domestic travel and three months in advance for overseas travel.
Aesthetic--No midriffs, tight-fitting clothes, or bathing suits, as they would show the outlines of my tubing and exit site. No dirty dancing, as the man would rub against my tubing and dislodge the transfer set from its retaining belt. No crazy sex, as the 12 inches of tubing, 3-1/2-inch plastic transfer set, and exit site bandaging really get in the way--to say nothing for the bulk and the 18 inches of tubing of my insulin pump. No romantic bedroom, as it is piled high with boxes of dialysis solution and encumbered by a therapy table.
So, though I will continue to be strong and positive, doing as much as I possibly can, it would be nice, too, if friends understood that dialysis is not a walk in the park, that it is a major alteration to the fabric of my life, that I want to be free of it as soon as possible, that if I don't get free of it soon I will die, that I absolutely do not want to spend the rest of my days hooked up to a machine every night.
On one hand, this says a great deal about how I present myself to the world. I don't focus on limitations and make a point of doing as much as I possibly can for myself. People see me as vibrant, strong, and full of life, and I am grateful for their positive vision of me.
On the other hand, it seems odd that my friends have such a dim idea of what this huge part of my life entails. It would be as if a friend didn't know I was single, or if she didn't know I had a child or that I worked as a writer. It's similar to how many people have said to me over the years that diabetes is "just avoiding candy." Wow, if only that were true! That would be easy. It's how it attacks every organ and every tissue of the body that's the difficult part.
Last summer my friend Araia, who lives in rural northeastern Washington state, said I should visit her. We could float on inner tubes down the river that serves as one of her property lines, she said, not realizing that, though this sounds idyllic, it's no longer possible. Any water activity besides a shower is verboten, since any contact with water carries with it the high possibility of infection through the exit site for the tubing that emerges from my abdomen.
Last week my friend Helene in Nova Scotia asked me if I'd like to go to New Zealand with her. Helene is an Air Canada retiree and has lifetime discount tickets. Plus, she has a friend on the North Island with whom we could stay. I have always wanted to go to New Zealand and was thrilled with this plan. I emailed my globe-trotting, always-up-for-an-adventure friend Heather, who took a year to explore the South Pacific. Though Heather's travels were 12 years ago, I still wanted her tips on kiwi journeys. She enthusiastically wrote back that by all means I should hitchhike as it is totally safe and completely acceptable. Like Araia's plan of floating down a river, this, too, sounds quite romantic and adventuresome, but is completely impossible. The dialysis machine weighs about 35 pounds, and the supplies I need for nightly dialysis weigh another 30 pounds--that's 30 pounds every day! Hitchhiking would only be possible if a U-Haul were following me.
So, though I appreciate Araia's and Heather's image of me as someone who can do anything, I began making a mental list of all the things that are no longer possible with dialysis. They fall into three categories: hygienic, logistical, and aesthetic.
Hygienic--Anything that involves water is out. (I am, thank goodness, allowed to shower, but this does not involve submersion.) Canoing, kayaking, water skiing, surfing, swimming, jacuzzi-ing, inner tubing, bathing. Anything that involves dirty conditions, as the environment in which I hook up to the dialysis machine and cap off in the morning must be as free of germs and dirt as possible. This would mean having a closed-off room in which to conduct dialysis, a room without open windows, ceiling fans, A/C, blowing heaters, animals. No putting down a sleeping bag on someone's living room floor.
Logistical--Travel is limited to personal automobile (in which to lug around all my dialysis solution and other equipment) or staying at one location (such as a resort, hotel, or friend's house). Travel by any other means is not feasible--train, bicycle, foot, boat, horse or other pack animal. No late-night events or all-night events. (Last night, for example, I was a party-pooper, saying no to a 7 p.m. movie, as I had to be home by 9:30 to hook up.) No spontaneous trips, esp. any that involve flying, as arrangements for the shipment of supplies must be made six weeks in advance for domestic travel and three months in advance for overseas travel.
Aesthetic--No midriffs, tight-fitting clothes, or bathing suits, as they would show the outlines of my tubing and exit site. No dirty dancing, as the man would rub against my tubing and dislodge the transfer set from its retaining belt. No crazy sex, as the 12 inches of tubing, 3-1/2-inch plastic transfer set, and exit site bandaging really get in the way--to say nothing for the bulk and the 18 inches of tubing of my insulin pump. No romantic bedroom, as it is piled high with boxes of dialysis solution and encumbered by a therapy table.
So, though I will continue to be strong and positive, doing as much as I possibly can, it would be nice, too, if friends understood that dialysis is not a walk in the park, that it is a major alteration to the fabric of my life, that I want to be free of it as soon as possible, that if I don't get free of it soon I will die, that I absolutely do not want to spend the rest of my days hooked up to a machine every night.
Saturday, December 19, 2009
A Merry Night of Caroling
Though this past month has been hell, it finished in a beautiful way--with the annual caroling party. Though about 15 people said they would make it, only four actually did. With Aaron, Rasputin the reluctant elf dog, and me that made seven all told. A good-sized group.
We did less caroling for brandy than we have done in previous years, but still one household poured their last dregs of Christian Brothers into the guys' Solo cups (I just sing and make merry; I don't drink), and O'Connell's gave out free shots. Though some people were too cool to indulge us, in general, our listeners were merry and grateful. One of the highlights of the evening was when we surrounded the old guy who always sits in front of the corner liquor store and sang "Joy to the World" and "We Wish You a Merry Christmas." He said he had not heard people caroling since the 1940s. Wow, we broke a six-decade dry spell!
Every year we attempt to rouse the hipsters at Porfolio Coffeehouse from their ennui. Once again, we were unsuccessful. The best we can ever get from these bored-with-life, young people is a momentary lifting of their eyes from their laptop screens or iPods and a tiny smirk. They're just too cool to enjoy anything. But we always look forward to this stop, as I'm sure all of you have at one time or another taken perverted pleasure in being overly upbeat around an angry soul.
Besides, lurking deep within these hipsters, as within each and every human being on the planet, is a light of love. It's just that some people are so weighted down by the travails of life or by their post-modern artifice that they are not always accessing that light. Our aim every year during the caroling is to bring that light forward in as many souls as possible.
Merry Christmas to all!
We did less caroling for brandy than we have done in previous years, but still one household poured their last dregs of Christian Brothers into the guys' Solo cups (I just sing and make merry; I don't drink), and O'Connell's gave out free shots. Though some people were too cool to indulge us, in general, our listeners were merry and grateful. One of the highlights of the evening was when we surrounded the old guy who always sits in front of the corner liquor store and sang "Joy to the World" and "We Wish You a Merry Christmas." He said he had not heard people caroling since the 1940s. Wow, we broke a six-decade dry spell!
Every year we attempt to rouse the hipsters at Porfolio Coffeehouse from their ennui. Once again, we were unsuccessful. The best we can ever get from these bored-with-life, young people is a momentary lifting of their eyes from their laptop screens or iPods and a tiny smirk. They're just too cool to enjoy anything. But we always look forward to this stop, as I'm sure all of you have at one time or another taken perverted pleasure in being overly upbeat around an angry soul.
Besides, lurking deep within these hipsters, as within each and every human being on the planet, is a light of love. It's just that some people are so weighted down by the travails of life or by their post-modern artifice that they are not always accessing that light. Our aim every year during the caroling is to bring that light forward in as many souls as possible.
Merry Christmas to all!
One Helluva Month
Yesterday was the close of one of the most challenging months of my life. My son, Aaron, counts it as his absolute worst.
It all began on Nov. 18 when I had triple bypass surgery. The aftermath of that is something I wouldn't wish on anyone--severe fluid retention, nausea, vomiting, extreme anemia, incision pain, back pain, leg pain, backed-up GI tract, dizziness. And the month closed with my mother's end-of-life suffering and the emotional drama it caused.
Aaron, of course, had to watch one of his very favorite people go through hell and back. Add to this all the extra driving and errands he had to perform in order to visit me and take care of his grandmother and me. Though he took three weeks off from his position with the Los Angeles County Museum of Art, he continued to work three nights a week at the restaurant and as a research assistant for a UCLA professor. He also had the stress and time commitment of getting graduate school applications filed on time.
If this weren't enough, his car was rear-ended, he was badly scraped in a bicycle accident, a girl who seemed perfect for him up and dropped him, and he got in a fist fight with a friend.
Aaron and I are so looking forward to a happier, healthier new year!
It all began on Nov. 18 when I had triple bypass surgery. The aftermath of that is something I wouldn't wish on anyone--severe fluid retention, nausea, vomiting, extreme anemia, incision pain, back pain, leg pain, backed-up GI tract, dizziness. And the month closed with my mother's end-of-life suffering and the emotional drama it caused.
Aaron, of course, had to watch one of his very favorite people go through hell and back. Add to this all the extra driving and errands he had to perform in order to visit me and take care of his grandmother and me. Though he took three weeks off from his position with the Los Angeles County Museum of Art, he continued to work three nights a week at the restaurant and as a research assistant for a UCLA professor. He also had the stress and time commitment of getting graduate school applications filed on time.
If this weren't enough, his car was rear-ended, he was badly scraped in a bicycle accident, a girl who seemed perfect for him up and dropped him, and he got in a fist fight with a friend.
Aaron and I are so looking forward to a happier, healthier new year!
Friday, December 18, 2009
A Visitation
Last night after Aaron went to his restaurant job, I began hearing knocking on the walls. This was definitely knocking, not the assorted noises made by the rodents that sometimes lurk in the frame of this old building. Later in the evening, objects in rooms in which I was not present began dropping. Objects that had been securely, not precariously, placed. Finally, before I went to bed, I turned off the lights in the living room, leaving on only the Christmas tree lights. As the four bulbs of the ceiling fan went off, another bout of knocking began. I smiled and asked, "Is that you, Mom?"
Immediately upon making that query, one of the bulbs in the ceiling fan turned on, then off. Interesting because this is one of those cool bulbs that comes on slowly, not all at once, as it did this time. Also interesting is that only one of the four ceiling-fan bulbs turned on, though they are all activated by one switch. I took this to be a "yes."
As an additional confirmation, Rasputin barked and was agitated. Animals know.
I spoke aloud to her in a relaxed and loving way, something that I had not been able to do when she was lying in the hospital bed, a mere shell of a human being. I said something like this:
"Mom, I know these last years and especially these last weeks and days have been difficult for you, and I'm sorry for that. I know that you were not a happy person, and I'm sorry for that too. But what I wish for you now is that you open yourself up completely and unabashedly to accepting love in a way that you never opened yourself up to it when you were on this plane of existence. I wish that you embrace God's love fully, and that it is much, much more than you had ever dreamed love could be.
"I also know you suffered from anxiety, and that is why I wish you peace. I hope that you find peace and comfort, rest for your soul.
"I wish you a peaceful, smooth, easy transition to realms of light and love. Take good care, Mom. You are free to go in peace and in love. Goodbye, Mom."
I then asked my protector, Archangel Michael, to escort her, to lead her to her next assignment.
Since then, there have been no more phenomena. I believe she has transitioned.
Immediately upon making that query, one of the bulbs in the ceiling fan turned on, then off. Interesting because this is one of those cool bulbs that comes on slowly, not all at once, as it did this time. Also interesting is that only one of the four ceiling-fan bulbs turned on, though they are all activated by one switch. I took this to be a "yes."
As an additional confirmation, Rasputin barked and was agitated. Animals know.
I spoke aloud to her in a relaxed and loving way, something that I had not been able to do when she was lying in the hospital bed, a mere shell of a human being. I said something like this:
"Mom, I know these last years and especially these last weeks and days have been difficult for you, and I'm sorry for that. I know that you were not a happy person, and I'm sorry for that too. But what I wish for you now is that you open yourself up completely and unabashedly to accepting love in a way that you never opened yourself up to it when you were on this plane of existence. I wish that you embrace God's love fully, and that it is much, much more than you had ever dreamed love could be.
"I also know you suffered from anxiety, and that is why I wish you peace. I hope that you find peace and comfort, rest for your soul.
"I wish you a peaceful, smooth, easy transition to realms of light and love. Take good care, Mom. You are free to go in peace and in love. Goodbye, Mom."
I then asked my protector, Archangel Michael, to escort her, to lead her to her next assignment.
Since then, there have been no more phenomena. I believe she has transitioned.
Thursday, December 17, 2009
Goodbye, Mom
My mother died today at the age of 88. Given her torturous last few days, she just has to be in a better place now.
It is my hope and prayer for her that her next life will be happier. I probably saw her smile a half dozen times in the 51 years I knew her. I'm not talking about the canned smiles people often give for photos, but the genuine mirthful smiles they spontaneously display when no one's snapping their picture. And not once during the past two years that she's been in California did I see her smile. I don't believe I ever heard her laugh, maybe chuckle a few times, but never laugh. And what saddens me the most is that she never got close to anyone, not her husband, not her children, not her friends. She never knew emotional honesty, much less emotional intimacy. She was always standing outside the action, observing. She approached human interaction as one might expect a foreigner or a visitor from another planet to do so--hesitantly, uncertain as to the local customs, looking for cues from others. That's why, so often she would merely say what she thought the people around her wanted to hear rather than speak her own truth, from which she seemed cut off.
Throughout my childhood and most of my adulthood, I took her distance and lack of emotional availability as a personal slight. Her disinterest in me, I must admit, and others have noted too, was more acute than with others. She quite literally did not listen to me because as she once admitted, she wasn't interested. It was only a year ago, when she went through an assessment program for seniors at the University of California Irvine Medical Center that I first learned she had a personality disorder that prevented her from getting close to anyone. How tragic.
This has been a very rough two years, caring for someone who had so little interest in me. Add to this the extreme anxiety, the complaining, the passive aggressive behavior, and the self-pity, and it is easy to see why I always left her emotionally and physically drained.
My mother was never a happy person, except the two years she lived in Europe prior to marrying and having children. As Aaron said when we were going through her Europe photographs before we moved her to California, "I sure would have liked to have known this woman." In those photos, she was smiling, ear to ear. She was dancing and bicycling and exploring and flirting. In short, she was enjoying life. But that's not the woman I ever knew. Not when I was child. Not when I was a young adult. Not when I was middle-aged.
She seemed especially unhappy in California. She expected me to be with her every day, but I had to work, I had health challenges of my own (heart attack, onset of dialysis, triple bypass surgery, many ER visits and hospitalizations), and I needed breaks from her. So often she seemed only interested in my medical issues insofar as they impacted the time I could spend with her. Even though I told her that if I didn't take care of my health, I sure wouldn't be able to take care of her, this did not register. The question was never "How are you feeling, Heidi?" It was always "When are you going to see me? When are you going to get this or do that for me?"
So I pray that my mother who has been so incredibly anxious will know peace. That my mother who has not known intimacy will find deep and abiding love, a love that penetrates her very being and that she opens herself up to feel deeply and profoundly. That my mother who always stood outside and observed will be part of the action and a full participant. That is my wish for you, Mom. Goodbye.
It is my hope and prayer for her that her next life will be happier. I probably saw her smile a half dozen times in the 51 years I knew her. I'm not talking about the canned smiles people often give for photos, but the genuine mirthful smiles they spontaneously display when no one's snapping their picture. And not once during the past two years that she's been in California did I see her smile. I don't believe I ever heard her laugh, maybe chuckle a few times, but never laugh. And what saddens me the most is that she never got close to anyone, not her husband, not her children, not her friends. She never knew emotional honesty, much less emotional intimacy. She was always standing outside the action, observing. She approached human interaction as one might expect a foreigner or a visitor from another planet to do so--hesitantly, uncertain as to the local customs, looking for cues from others. That's why, so often she would merely say what she thought the people around her wanted to hear rather than speak her own truth, from which she seemed cut off.
Throughout my childhood and most of my adulthood, I took her distance and lack of emotional availability as a personal slight. Her disinterest in me, I must admit, and others have noted too, was more acute than with others. She quite literally did not listen to me because as she once admitted, she wasn't interested. It was only a year ago, when she went through an assessment program for seniors at the University of California Irvine Medical Center that I first learned she had a personality disorder that prevented her from getting close to anyone. How tragic.
This has been a very rough two years, caring for someone who had so little interest in me. Add to this the extreme anxiety, the complaining, the passive aggressive behavior, and the self-pity, and it is easy to see why I always left her emotionally and physically drained.
My mother was never a happy person, except the two years she lived in Europe prior to marrying and having children. As Aaron said when we were going through her Europe photographs before we moved her to California, "I sure would have liked to have known this woman." In those photos, she was smiling, ear to ear. She was dancing and bicycling and exploring and flirting. In short, she was enjoying life. But that's not the woman I ever knew. Not when I was child. Not when I was a young adult. Not when I was middle-aged.
She seemed especially unhappy in California. She expected me to be with her every day, but I had to work, I had health challenges of my own (heart attack, onset of dialysis, triple bypass surgery, many ER visits and hospitalizations), and I needed breaks from her. So often she seemed only interested in my medical issues insofar as they impacted the time I could spend with her. Even though I told her that if I didn't take care of my health, I sure wouldn't be able to take care of her, this did not register. The question was never "How are you feeling, Heidi?" It was always "When are you going to see me? When are you going to get this or do that for me?"
So I pray that my mother who has been so incredibly anxious will know peace. That my mother who has not known intimacy will find deep and abiding love, a love that penetrates her very being and that she opens herself up to feel deeply and profoundly. That my mother who always stood outside and observed will be part of the action and a full participant. That is my wish for you, Mom. Goodbye.
Monday, December 14, 2009
Get Your Affairs in Order
Yesterday Aaron called those people who we figured would be interested in my mother's impending death. A few gave us messages for her. Aaron and I went to the hospital this afternoon to say goodbye. Then the tubes were taken from her throat while we waited in the chapel.
She was able to breathe on her own, a scenario I had not expected. This had been presented as an outside chance. I thought this would be the end, but the drama continues.
She is now receiving only an IV with fluid, glucose, and antibiotics, and morphine on an as-needed basis. When we left, she was still heavily sedated. I'll return tomorrow morning. My neighbor suggested I speak with the hospital ethicist. Perhaps this would give me some idea as to what to expect.
I just have to protect myself psychically from this as much as possible. The stress of this situation has caused me to lose sleep and has sent my blood sugar level skyrocketing. I have to take care of my own health.
I strongly suggest to everyone who is reading this to make sure your affairs are in order so that you and your loved ones do not go through this emotional rollercoaster ride.
1) Fill out an advanced directive.
2) Make sure as many people as possible have a copy of the directive--your doctor, your spouse, your best friend, your children, the hospital to which you would most likely be taken.
3) Appoint a power of attorney for healthcare. This is a legal document that appoints one person to make your medical decisions in case you cannot. Make sure your doctor and your hospital have the person's name and contact information on file.
4) Talk openly and honestly with your significant others about your wishes.
5) Encourage your parents and other loved ones to do the same.
Taking these steps can prevent a hospital from taking extraordinary measures that may prolong your existence but greatly diminish your quality of life and add to your suffering and the suffering of those who love you.
If I had not been my mother's power of attorney, healthcare power of attorney, guardian, and trustee, I am sure she would still be hooked up to a breathing apparatus. That's because it is legally more difficult to withdraw treatment than it is to withhold it in the first place.
She was able to breathe on her own, a scenario I had not expected. This had been presented as an outside chance. I thought this would be the end, but the drama continues.
She is now receiving only an IV with fluid, glucose, and antibiotics, and morphine on an as-needed basis. When we left, she was still heavily sedated. I'll return tomorrow morning. My neighbor suggested I speak with the hospital ethicist. Perhaps this would give me some idea as to what to expect.
I just have to protect myself psychically from this as much as possible. The stress of this situation has caused me to lose sleep and has sent my blood sugar level skyrocketing. I have to take care of my own health.
I strongly suggest to everyone who is reading this to make sure your affairs are in order so that you and your loved ones do not go through this emotional rollercoaster ride.
1) Fill out an advanced directive.
2) Make sure as many people as possible have a copy of the directive--your doctor, your spouse, your best friend, your children, the hospital to which you would most likely be taken.
3) Appoint a power of attorney for healthcare. This is a legal document that appoints one person to make your medical decisions in case you cannot. Make sure your doctor and your hospital have the person's name and contact information on file.
4) Talk openly and honestly with your significant others about your wishes.
5) Encourage your parents and other loved ones to do the same.
Taking these steps can prevent a hospital from taking extraordinary measures that may prolong your existence but greatly diminish your quality of life and add to your suffering and the suffering of those who love you.
If I had not been my mother's power of attorney, healthcare power of attorney, guardian, and trustee, I am sure she would still be hooked up to a breathing apparatus. That's because it is legally more difficult to withdraw treatment than it is to withhold it in the first place.
Something I Wouldn't Wish on Anyone
As I have really been struggling during the past few weeks since my triple bypass on Nov. 18, I have been unable to care for my mother. Even today I am so weak and tired, winded from walking a short distance. My son, Aaron, has gone over to see her and run errands for her during my absence. He was disturbed about how significantly she had declined--staring at a blank wall when he arrived, unresponsive or saying incoherent things. Saturday I drove for the first time post-op and was shocked by my mother's behavior--ranting, saying the same few words over and over, highly anxious, didn't know who I was, then screaming that I leave. I asked the staff to check her for a stroke. They said she checked out fine. The night nurse, however, felt Mom was in a bad way--unresponsive to questioning--so she called 911.
I was awoken by a call from my mother's facility around 12:30 a.m., then several calls throughout the night because info was missing from her records. As I was hooked up to the dialysis machine for 10 1/2 hours, I could not see her in the ER. Sunday morning, however, I drove to the hospital.
What I saw saddened me. She had tubes everywhere. Her eyes were rolled back. She was struggling with the restraints. It all seemed so cruel and pointless. I was crying. The nurse gave her morphine to relax, but now she just lies there with a blank stare. No response. I asked her to nod her head, squeeze my fingers, blink her eyes, but she didn't do any of this.
She has pneumonia, a sore on her foot, fever, water retention. Her blood sugar was almost 1,200, something I didn't realize was possible, as normal blood sugar is between 70 and 120.
Her wishes have always been not to be put on artificial life support, but because the facility did not provide that paperwork to the hospital, she was put on life support. I talked with the doctor, who was very kind and understanding. I said this is not what she wanted. She said Aaron and I could be with her, say our goodbyes, pass along any messages from others, and then the breathing tube could be removed. She may breathe on her own, or if not, the amount of morphine will be increased and she will drop off into a peaceful sleep from which she does not awake.
I just went through the breathing-tube ordeal with my surgery and the hours afterwards when the anesthesia was wearing off. It was absolute torture. I was frantic, trying to pull out the tube. I made a writing motion in the air, and someone brought me a pen and tablet. I did my best to write how awful this was, the feeling of the tube against my throat. I felt like I couldn't breathe. Absolute torture. And when I saw my mother struggling, I knew exactly what she was feeling.
For the last few months, my mother has given up. She gave up on walking and now is pushed in a wheelchair. She stopped dressing herself and brushing her teeth. She stopped watching TV, drawing, reading, writing letters, going out of her room. She no longer wanted to go for rides. And the most important thing in her life--chocolate--no longer holds any appeal. I bought chocolates for her before I went into the hospital on Nov. 18, and they were still there on Saturday, a month later.
This is all very hard. This has been an exceedingly difficult four weeks. I just want my mother to know peace. What she's going through now is something I wouldn't wish on anyone.
I was awoken by a call from my mother's facility around 12:30 a.m., then several calls throughout the night because info was missing from her records. As I was hooked up to the dialysis machine for 10 1/2 hours, I could not see her in the ER. Sunday morning, however, I drove to the hospital.
What I saw saddened me. She had tubes everywhere. Her eyes were rolled back. She was struggling with the restraints. It all seemed so cruel and pointless. I was crying. The nurse gave her morphine to relax, but now she just lies there with a blank stare. No response. I asked her to nod her head, squeeze my fingers, blink her eyes, but she didn't do any of this.
She has pneumonia, a sore on her foot, fever, water retention. Her blood sugar was almost 1,200, something I didn't realize was possible, as normal blood sugar is between 70 and 120.
Her wishes have always been not to be put on artificial life support, but because the facility did not provide that paperwork to the hospital, she was put on life support. I talked with the doctor, who was very kind and understanding. I said this is not what she wanted. She said Aaron and I could be with her, say our goodbyes, pass along any messages from others, and then the breathing tube could be removed. She may breathe on her own, or if not, the amount of morphine will be increased and she will drop off into a peaceful sleep from which she does not awake.
I just went through the breathing-tube ordeal with my surgery and the hours afterwards when the anesthesia was wearing off. It was absolute torture. I was frantic, trying to pull out the tube. I made a writing motion in the air, and someone brought me a pen and tablet. I did my best to write how awful this was, the feeling of the tube against my throat. I felt like I couldn't breathe. Absolute torture. And when I saw my mother struggling, I knew exactly what she was feeling.
For the last few months, my mother has given up. She gave up on walking and now is pushed in a wheelchair. She stopped dressing herself and brushing her teeth. She stopped watching TV, drawing, reading, writing letters, going out of her room. She no longer wanted to go for rides. And the most important thing in her life--chocolate--no longer holds any appeal. I bought chocolates for her before I went into the hospital on Nov. 18, and they were still there on Saturday, a month later.
This is all very hard. This has been an exceedingly difficult four weeks. I just want my mother to know peace. What she's going through now is something I wouldn't wish on anyone.
Thursday, December 03, 2009
So Tired of Feeling Lousy
It's now been more than two weeks since surgery, and I still feel lousy. I am so incredibly tired of this. I have a few hours or a half day of feeling OK once in a while, and then I'm back to utter exhaustion. Those of you who have called have commented on how good I sound. Hmmm...well, folks, projecting a positive attitude and a stiff upper lip has been my m.o. since age 13 when I was diagnosed with diabetes. I always aim to give the world a smiling face, in part because it helps me feel better too.
This has been the most difficult two weeks of my life from a physical standpoint. And now I'm entering Week 3. Just typing this makes my arms feel like they're holding 20-pound weights. My bones ache, back and neck pain wakes me up at night, my legs are still swollen and drum-tight, my belly remains distended, my feet are tingly and numb. I'm bruised and scarred. I am still haunted by nausea and dizziness. I'm severely anemic (7.8 hemoglobin, when 12 is the low end of normal), which means I'm very tired and cold. Last night I wore flannel PJs and a winter coat to bed and covered up with flannel sheets, two quilts, and a sleeping bag. I feel as if my system is continuing to be assaulted by the anesthesia, pain meds, and other drugs I've been subjected to. Everything is sluggish and uncomfortable. I'm 15 pounds over my pre-surgery weight. Frequently I'm out of breath after doing simple things.
I've heard of people feeling so much better after bypass surgery. I am so looking forward to at least feeling as well as I was prior to surgery.
Again, I am so appreciative of all who have been there for me, including Bev, who yesterday gave me a much-needed 2 1/2-hour massage.
This has been the most difficult two weeks of my life from a physical standpoint. And now I'm entering Week 3. Just typing this makes my arms feel like they're holding 20-pound weights. My bones ache, back and neck pain wakes me up at night, my legs are still swollen and drum-tight, my belly remains distended, my feet are tingly and numb. I'm bruised and scarred. I am still haunted by nausea and dizziness. I'm severely anemic (7.8 hemoglobin, when 12 is the low end of normal), which means I'm very tired and cold. Last night I wore flannel PJs and a winter coat to bed and covered up with flannel sheets, two quilts, and a sleeping bag. I feel as if my system is continuing to be assaulted by the anesthesia, pain meds, and other drugs I've been subjected to. Everything is sluggish and uncomfortable. I'm 15 pounds over my pre-surgery weight. Frequently I'm out of breath after doing simple things.
I've heard of people feeling so much better after bypass surgery. I am so looking forward to at least feeling as well as I was prior to surgery.
Again, I am so appreciative of all who have been there for me, including Bev, who yesterday gave me a much-needed 2 1/2-hour massage.
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