Friday, September 30, 2005
Company's Coming
Bamps' nephew and his wife decided to come for a visit. It had been a long time since we'd seen Jimmy and Lorraine. They lived in Pennsylvania and had come down to visit before my grandmother had died. I don't think they were quite prepared to see my grandfather in the state he was in. Jimmy was the tall, blond Nordic type and you wouldn't think it would be possible to get any paler than that, but the moment he saw my grandfather, all the color drained from his face. It was the same with Lorraine.
By now Bamps' weight was down to around 115 pounds. His face was gaunt, and he had developed a Parkinsonian tremor. He could have had tests to determine if it was Parkinson's or a side effect of one of his 31 medicines, but he decided that would mean someone would have to stick him with a needle and he just didn't like that idea. His lung function had deteriorated and he was on oxygen 24/7. The Kaposi's Sarcoma had spread over his arms, legs, trunk, face and neck, and he had purpura and petechia. His hair had turned completely white, but being curious, he had decided to let it grow out to see what he would look like in a ponytail. However at this point it was only long to enough to make him look a bit like Albert Einstein.
If you think all that would slow him down, you're wrong. With his portable oxygen tank, he'd go outside and sit on the patio and putter a little in his garden. Despite having very sandy soil, he grew great tomatoes and swiss chard. He'd keep his crosswords, sports pages and books (mysteries and suspense) on the kitchen table so he'd have to get up to walk some. He refused a bedside commode in favor of a long O2 tube so he could walk to the bathroom and have some privacy when "needed". We did get a shower seat and a handheld Shower Massage so he could take showers unassisted. His independence was very important to him.
While Jimmy and Lorraine were here, we took an outing to a longtime friend's home. Bill and Renie had know my grandfather since at least 1960 maybe longer than that. It was great to see him get out of the house and to a place other than a doctor's office. We had a great visit, I think it must have been about three hours, and then we went home.
Jimmy and my grandparents had been very close when Jimmy was growing up, and I think my grandfather thought of him more like a son. Bamps talked to his sister in Pennsylvania every week, but neither one of them could travel to see each other. Jimmy and Lorraine stayed the weekend, and they talked, reminisced, watch ballgames and commiserated that the Yankees did so poorly that year.
However, before Jimmy and Lorraine left, my grandfather announced to hell with what the doctors are saying, he's stick around for the World Series (which was coming up on October 15. (At his last doctor's appoint a few day before J & L arrived, he was given only two to three weeks to live.) Bamps was supporting the Oakland A's since the Yankees obviously weren't going to make it.
What bugged me is that while my grandfather let his nephew and his wife visit, I wanted my mother and sister and brothers to come visit and he always said no. (This is where I'm going to get a little sidetracked for a bit.) They were in Idaho, and my grandfather could have sent them tickets, but he didn't want to. It wasn't because he didn't love them. It was because he loved them too much to let them see him like he was. It was the same reason my grandmother, when she was dying, absolutely did not want my mother to come out. Both of them said the same thing: that they wanted my mother and the rest of the grandkids to remember them as being young and vital, not wasted away by illness.
I can remember having some very heated arguments with them about this! I told them my mother wouldn't care how they looked, she would just love to see them, to hold them and comfort them. She would just want to be there. You see, they had always treated my mother with kid gloves. To some extent, they had reason to.
For whatever reason (my mother was adopted so the real story is forever unknown) when my mother was under a great deal of stress - let's just say she sometimes wasn't herself. One time, when my grandmother was pretty close to dying, she had me sit down with her and watch a late movie. It was the last thing I wanted to do when I could be watching yet another rerun of Star Trek in my room or doing something equally senseless. But she bribed with me with a late night pizza from Roma Pizza, and we watched the movie. The movie we were watching was All About Eve, a woman with a "split personality". After the movie was over, she said to me "You know, your mother is a lot like Eve sometimes. That's why we always protected her." I must have looked at her like she was nuts - my mother was nothing like Eve White or Eve Black. Since I grew up with my grandparents, what Nany said made absolutely no sense at all, until I remembered something that happened before I went to live with my grandparents. I had asked to go play with a friend of mine and my mother "Yeah, what do I care?" It really wasn't like her, but I was seven and just figured she was mad about something. So when I came home, I got punished for going off without asking permission. No matter how much I protested, my mother and stepfather wouldn't believe that my mother had said yes. It wasn't long after that I went to live with my grandparents.
Years later my mother was officially diagnosed with Multiple Personality Disorder, now called Disassociative Identity Disorder. Looking back now I realize that they were probably trying to protect her from having one of her personalities emerge. Mom's personalities had been silent for a long time, although they apparently did come out occasionally. My mother wasn't even aware of them, although other people, like my grandparents, and one of my mother's friends were. It's still beyond me how that could be. My sibs and I used to joke about which mom was going to in charge today, because she would always be changing her mind and would forget things, and was a member of the "mood-a-minute" club as we used to put it. It wasn't until "Gloria" finally introduced herself to my sister and sister-in-law about ten years ago that we realized the joke was on us. It was NOT a pleasant introduction. But all that's another story.
As well as staying around for the World Series, which was coming up on the 15th, he decided to stay for Thankgiving. After all, it's only six weeks more. He told Juanita this and she said "Sure, but what if your team loses? You still stay around?" He thought about it for a moment and said "Sure, I'm going to hang around for pumpkin pie season." I'm a pumpkin pie fan myself and I understand the logic!
By now Bamps' weight was down to around 115 pounds. His face was gaunt, and he had developed a Parkinsonian tremor. He could have had tests to determine if it was Parkinson's or a side effect of one of his 31 medicines, but he decided that would mean someone would have to stick him with a needle and he just didn't like that idea. His lung function had deteriorated and he was on oxygen 24/7. The Kaposi's Sarcoma had spread over his arms, legs, trunk, face and neck, and he had purpura and petechia. His hair had turned completely white, but being curious, he had decided to let it grow out to see what he would look like in a ponytail. However at this point it was only long to enough to make him look a bit like Albert Einstein.
If you think all that would slow him down, you're wrong. With his portable oxygen tank, he'd go outside and sit on the patio and putter a little in his garden. Despite having very sandy soil, he grew great tomatoes and swiss chard. He'd keep his crosswords, sports pages and books (mysteries and suspense) on the kitchen table so he'd have to get up to walk some. He refused a bedside commode in favor of a long O2 tube so he could walk to the bathroom and have some privacy when "needed". We did get a shower seat and a handheld Shower Massage so he could take showers unassisted. His independence was very important to him.
While Jimmy and Lorraine were here, we took an outing to a longtime friend's home. Bill and Renie had know my grandfather since at least 1960 maybe longer than that. It was great to see him get out of the house and to a place other than a doctor's office. We had a great visit, I think it must have been about three hours, and then we went home.
Jimmy and my grandparents had been very close when Jimmy was growing up, and I think my grandfather thought of him more like a son. Bamps talked to his sister in Pennsylvania every week, but neither one of them could travel to see each other. Jimmy and Lorraine stayed the weekend, and they talked, reminisced, watch ballgames and commiserated that the Yankees did so poorly that year.
However, before Jimmy and Lorraine left, my grandfather announced to hell with what the doctors are saying, he's stick around for the World Series (which was coming up on October 15. (At his last doctor's appoint a few day before J & L arrived, he was given only two to three weeks to live.) Bamps was supporting the Oakland A's since the Yankees obviously weren't going to make it.
What bugged me is that while my grandfather let his nephew and his wife visit, I wanted my mother and sister and brothers to come visit and he always said no. (This is where I'm going to get a little sidetracked for a bit.) They were in Idaho, and my grandfather could have sent them tickets, but he didn't want to. It wasn't because he didn't love them. It was because he loved them too much to let them see him like he was. It was the same reason my grandmother, when she was dying, absolutely did not want my mother to come out. Both of them said the same thing: that they wanted my mother and the rest of the grandkids to remember them as being young and vital, not wasted away by illness.
I can remember having some very heated arguments with them about this! I told them my mother wouldn't care how they looked, she would just love to see them, to hold them and comfort them. She would just want to be there. You see, they had always treated my mother with kid gloves. To some extent, they had reason to.
For whatever reason (my mother was adopted so the real story is forever unknown) when my mother was under a great deal of stress - let's just say she sometimes wasn't herself. One time, when my grandmother was pretty close to dying, she had me sit down with her and watch a late movie. It was the last thing I wanted to do when I could be watching yet another rerun of Star Trek in my room or doing something equally senseless. But she bribed with me with a late night pizza from Roma Pizza, and we watched the movie. The movie we were watching was All About Eve, a woman with a "split personality". After the movie was over, she said to me "You know, your mother is a lot like Eve sometimes. That's why we always protected her." I must have looked at her like she was nuts - my mother was nothing like Eve White or Eve Black. Since I grew up with my grandparents, what Nany said made absolutely no sense at all, until I remembered something that happened before I went to live with my grandparents. I had asked to go play with a friend of mine and my mother "Yeah, what do I care?" It really wasn't like her, but I was seven and just figured she was mad about something. So when I came home, I got punished for going off without asking permission. No matter how much I protested, my mother and stepfather wouldn't believe that my mother had said yes. It wasn't long after that I went to live with my grandparents.
Years later my mother was officially diagnosed with Multiple Personality Disorder, now called Disassociative Identity Disorder. Looking back now I realize that they were probably trying to protect her from having one of her personalities emerge. Mom's personalities had been silent for a long time, although they apparently did come out occasionally. My mother wasn't even aware of them, although other people, like my grandparents, and one of my mother's friends were. It's still beyond me how that could be. My sibs and I used to joke about which mom was going to in charge today, because she would always be changing her mind and would forget things, and was a member of the "mood-a-minute" club as we used to put it. It wasn't until "Gloria" finally introduced herself to my sister and sister-in-law about ten years ago that we realized the joke was on us. It was NOT a pleasant introduction. But all that's another story.
As well as staying around for the World Series, which was coming up on the 15th, he decided to stay for Thankgiving. After all, it's only six weeks more. He told Juanita this and she said "Sure, but what if your team loses? You still stay around?" He thought about it for a moment and said "Sure, I'm going to hang around for pumpkin pie season." I'm a pumpkin pie fan myself and I understand the logic!
Monday, September 19, 2005
It's Snickers Time Again!
By now the thrush had finally quieted down. It wasn't completely gone, but at least Bamps could put in his dentures. That meant one thing: SNICKERS! He had really missed his candy bars. All the high fat food he was eating was barely keeping his weight up and we were hoping the Snickers would add some weight. Not even Juanita's brownies, fudge and arroz con pollo were doing much to keep his weight up.
On days Juanita didn't come by with goodies, Bamps had to suffer with my cooking. Now, I'm a good cook...then...well, I could grill lots of stuff! We had lots of grilled chicken, turkey breasts, bananas and peaches.
While the thrush was waning, there were other things that were beginning to happen. Bamps' TB was more active and he was coughing more. His ribs always hurt. He had lesions scattered over his body, which were diagnosed as Kaposi's Sarcoma. He weighed the treatments available at the time, but declined them all when Dr. S said that overall, it wouldn't make much of difference in terms of lifespan.
Day and night he would break out in drenching sweats and run fevers for now reason. He joked about being in menopause.
And still no positive HIV test. Doctors A & S said that unless he wanted to, they'd skip testing and just treat symptoms as they occurred. There was another test that would be out in a few weeks that might be more sensitive. My grandfather agreed with them.
Outside the doctor's offices, Bamps said that no matter what the tests said, he knew he had AIDS. There were just too many symptoms, including a horribly low t-cell count.
On days Juanita didn't come by with goodies, Bamps had to suffer with my cooking. Now, I'm a good cook...then...well, I could grill lots of stuff! We had lots of grilled chicken, turkey breasts, bananas and peaches.
While the thrush was waning, there were other things that were beginning to happen. Bamps' TB was more active and he was coughing more. His ribs always hurt. He had lesions scattered over his body, which were diagnosed as Kaposi's Sarcoma. He weighed the treatments available at the time, but declined them all when Dr. S said that overall, it wouldn't make much of difference in terms of lifespan.
Day and night he would break out in drenching sweats and run fevers for now reason. He joked about being in menopause.
And still no positive HIV test. Doctors A & S said that unless he wanted to, they'd skip testing and just treat symptoms as they occurred. There was another test that would be out in a few weeks that might be more sensitive. My grandfather agreed with them.
Outside the doctor's offices, Bamps said that no matter what the tests said, he knew he had AIDS. There were just too many symptoms, including a horribly low t-cell count.
Tuesday, September 06, 2005
September 6, 1988
The dog days were hanging around. Pompano was hot and muggy. Bamps decided to move into the living room where he could be under the stronger air conditioner. Plus I think he felt a bit confined in his bedroom. It was always so quiet in there. It was great when Nany was alive and we'd stay up late to watch some movies or play rummy or scrabble, but now he wanted some noise. One of the reasons he liked being in the living room was that he could hear the children next door play.
He still kept ice cream in the freezer for them, and every afternoon JD and Heidi would come over and we would all have an ice cream cone. JD had started first grade and loved to tell my grandfather about his day and show his homework off. Heidi was only three, so she had stories to tell of all the adventures her stuffed animals had when us humans went to sleep at night. Her animals lived magical lives!
The days had settled into a routine. Breakfast at 7:30 (usually Raisin Bran and Sanka), a mid-morning snack of chocolate ice cream or a brownie. Then about 11:30 Juanita or Helena would come by and check Bamps' vital, make sure his meds were fine, and would sit and visit. Helena was woman in her late 60s who went back to private duty nursing after her husband had died from brain cancer a couple years earlier. She was originally from Poland and still had a bit of an accent. She would regularly bring stuffed cabbage and cookies.
I don't know where Juanita and Helena found time to do all the baking they did! I know that other patients got goodies too. One time Juanita even got us to try goat pies. Yup, goat pies. They were like empanadas, and the meat was seasoned a bit too much for Bamps, but I loved it.
The day after Labor Day Bamps had an appointment with Dr. S. It was like all his other appointments with Dr. S. Lungs are looking better, bloodwork was worse, no HIV positive test.
After we left Dr. S., we decided to take a drive to see the beach. It had been years since my grandfather and I had gone to the beach. He got out and sat on the bench in the sand, and we talked about how much Pompano had changed since we moved there in 1960. He liked it better then.
After awhile, he decided he wanted to go to IHOP. I thought it was great that he actually felt like eating. He had his favorite, silver dollar pancakes, but he only ordered a child's portion. He did eat them all. That was the last time we went out to a restaurant; somehow I knew that it would be even before we even went in.
He slept well that night, blissed out on carbs.
For the first time since we'd moved in, I sat in my bedroom and cried while Hank held me. I didn't want to see him go through this. He didn't deserve it. No body does. I knew everybody dies; it's natural. It's a part of the circle of life. But what I didn't want was for him to suffer. He was a good man, full of love, kind, funny, generous. He had always hoped he would be killed at age 90 by a jealous husband of a 25 year old blond.
Well, you never know, there may still be time!
He still kept ice cream in the freezer for them, and every afternoon JD and Heidi would come over and we would all have an ice cream cone. JD had started first grade and loved to tell my grandfather about his day and show his homework off. Heidi was only three, so she had stories to tell of all the adventures her stuffed animals had when us humans went to sleep at night. Her animals lived magical lives!
The days had settled into a routine. Breakfast at 7:30 (usually Raisin Bran and Sanka), a mid-morning snack of chocolate ice cream or a brownie. Then about 11:30 Juanita or Helena would come by and check Bamps' vital, make sure his meds were fine, and would sit and visit. Helena was woman in her late 60s who went back to private duty nursing after her husband had died from brain cancer a couple years earlier. She was originally from Poland and still had a bit of an accent. She would regularly bring stuffed cabbage and cookies.
I don't know where Juanita and Helena found time to do all the baking they did! I know that other patients got goodies too. One time Juanita even got us to try goat pies. Yup, goat pies. They were like empanadas, and the meat was seasoned a bit too much for Bamps, but I loved it.
The day after Labor Day Bamps had an appointment with Dr. S. It was like all his other appointments with Dr. S. Lungs are looking better, bloodwork was worse, no HIV positive test.
After we left Dr. S., we decided to take a drive to see the beach. It had been years since my grandfather and I had gone to the beach. He got out and sat on the bench in the sand, and we talked about how much Pompano had changed since we moved there in 1960. He liked it better then.
After awhile, he decided he wanted to go to IHOP. I thought it was great that he actually felt like eating. He had his favorite, silver dollar pancakes, but he only ordered a child's portion. He did eat them all. That was the last time we went out to a restaurant; somehow I knew that it would be even before we even went in.
He slept well that night, blissed out on carbs.
For the first time since we'd moved in, I sat in my bedroom and cried while Hank held me. I didn't want to see him go through this. He didn't deserve it. No body does. I knew everybody dies; it's natural. It's a part of the circle of life. But what I didn't want was for him to suffer. He was a good man, full of love, kind, funny, generous. He had always hoped he would be killed at age 90 by a jealous husband of a 25 year old blond.
Well, you never know, there may still be time!
HIV/AIDS Resources For Katrina's Displaced
I'm sure their are many more out there, but it's a start. Not all of the agencies are online.
Acadiana C.A.R.E.S.
The Executive Director of Acadiana C.A.R.E.S. is a co-chair on the Louisiana AIDS Advocacy Network, along with the ED of the New Orleans AIDS Task Force. Your donation will help them provide food, medication, housing, and other services for evacuees immediately, and the coordination of services in the long run for the hardest hit state. Send checks payable to Acadiana C.A.R.E.S., to:
Acadiana C.A.R.E.S.
Atten. Claude Martin, Executive Director
P.O.Box 3865L
afayette, LA 70502
Episcopal AIDS Committee is helping to meet the needs of individuals affected by Hurricane Katrina who are having problems getting medications, as well as other emergency relief issues. For information, call board member Ella Tardy at 601-892-3686. Donations may be mailed to:
Episcopal AIDS Committee
P.O. Box 55803
Jackson, MS 39296
Katrina AIDS Alliance Emergency Fund Funds will support the emergency needs of families and young people living with HIV/AIDS served by Ryan White CARE Act Title IV programs in Louisiana and Mississippi.
The Montrose ClinicLocated in Houston, Texas, the clinic is working to meet these needs of the influx of people with HIV/AIDS that have been displaced by the hurricane by providing medical care and mental health services for evacuees, and coordinating an emergency food and shelter effort.
To make a donation, please contact Sonna Alton at (713) 830-3015, donate online at www.montroseclinic.org, or mail a check, indicating that the donation is being made for hurricane relief, to:
Katy Caldwell
Executive DirectorMontrose Clinic
215 WestheimerHouston, TX 77006
America's Second Harvest Hunger-relief organization providing food to those affected by Hurricane Katrina.
Hurricane Katrina Emergency Relief Fund for LGBTQ Youth & Families Charitable donations made through the National Youth Advocacy Coalition will support the emergency needs of LGBTQ youth and families affected by Hurricane Katrina.
Acadiana C.A.R.E.S.
The Executive Director of Acadiana C.A.R.E.S. is a co-chair on the Louisiana AIDS Advocacy Network, along with the ED of the New Orleans AIDS Task Force. Your donation will help them provide food, medication, housing, and other services for evacuees immediately, and the coordination of services in the long run for the hardest hit state. Send checks payable to Acadiana C.A.R.E.S., to:
Acadiana C.A.R.E.S.
Atten. Claude Martin, Executive Director
P.O.Box 3865L
afayette, LA 70502
Episcopal AIDS Committee is helping to meet the needs of individuals affected by Hurricane Katrina who are having problems getting medications, as well as other emergency relief issues. For information, call board member Ella Tardy at 601-892-3686. Donations may be mailed to:
Episcopal AIDS Committee
P.O. Box 55803
Jackson, MS 39296
Katrina AIDS Alliance Emergency Fund Funds will support the emergency needs of families and young people living with HIV/AIDS served by Ryan White CARE Act Title IV programs in Louisiana and Mississippi.
The Montrose ClinicLocated in Houston, Texas, the clinic is working to meet these needs of the influx of people with HIV/AIDS that have been displaced by the hurricane by providing medical care and mental health services for evacuees, and coordinating an emergency food and shelter effort.
To make a donation, please contact Sonna Alton at (713) 830-3015, donate online at www.montroseclinic.org, or mail a check, indicating that the donation is being made for hurricane relief, to:
Katy Caldwell
Executive DirectorMontrose Clinic
215 WestheimerHouston, TX 77006
America's Second Harvest Hunger-relief organization providing food to those affected by Hurricane Katrina.
Hurricane Katrina Emergency Relief Fund for LGBTQ Youth & Families Charitable donations made through the National Youth Advocacy Coalition will support the emergency needs of LGBTQ youth and families affected by Hurricane Katrina.
Montrose Clinic to Help Displaced with HIV/AIDS
This from the Montrose Clinic in Houston, Harris County, TX:
Because of the large number of Katrina refugees who are expected to be in the Houston area, Montrose is reaching out. If you have HIV, AIDS, or HepC, please call the at the number above. I was looking over their web site and they offer many services including chiropractic and accupuncture. Please give them a call!
HOUSTON – August 31, 2005 – Montrose Clinic & The Assistance Fund will make every effort to provide medical and medication assistance to those living with HIV/AIDS who have been displaced by Hurricane Katrina.
Montrose Clinic specializes in HIV primary health care services and The Assistance Fund oversees the HIV drug assistance program. It is crucial for the continuity of care to be maintained for those ravaged by Katrina who are living with HIV/AIDS. In order to make this happen there must be access for all to medical services and medications vital to managing their health.
The Montrose Clinic is working closely with the Harris County HIV Services and HRSA to ensure that each request for HIV medical services can be met. Montrose Clinic has set up an emergency hot-line at 713-830-3047. Either someone will assist you directly or you will be instructed to leave a message and someone will return your call as quickly as possible.
Because of the large number of Katrina refugees who are expected to be in the Houston area, Montrose is reaching out. If you have HIV, AIDS, or HepC, please call the at the number above. I was looking over their web site and they offer many services including chiropractic and accupuncture. Please give them a call!
