The Florida Memorial Service will be held Oct. 5, 2009, Monday, 11 a.m. at St. Paul's United Methodist Church in Largo on the corner of Highland and Rosary. The service will be in the Chapel next to the sanctuary. That's the southwest corner of the intersection. Parking is available in the sanctuary lot.
The Louisiana Service will be in Golden Meadow on Saturday, Sept. 26 at Our Lady of Prompt Succor Catholic Church: Visitation at 10 a.m., service at 11 a.m.
We finalized plans for the Florida service just this Friday evening. Sybil has been organizing the Golden Meadow one. Thank you Sybil.
Saturday, September 19, 2009
Monday, September 14, 2009
September 13, 2009, 9:00 pm
Janette Marie Plaisance Delph died last night around 9 p.m in a very gentle and peaceful way. As far as we could tell, she was comfortable and in no pain. She was unresponsive since I last wrote.
I think I will add more details and story to this entry later today or tomorrow.
We will have two services: one here in Florida and one in Louisiana. I have no idea on the timing or how I'm going to create a service here, but I will let you know through this blog and the newspaper as soon as I do.
Thank you very much, everyone, for your support and understanding through this very intense, condensed process. Being willing to get your information about your friend and family member through this impersonal medium was and is a huge gift for me. Thank you.
And a bit of an awkward request: while we thank you for your thoughts and your desire to give comfort to us, please don't send flowers to the house. Aunt Eliska is allergic to many of them and I always forget to give them water.
I think I will add more details and story to this entry later today or tomorrow.
We will have two services: one here in Florida and one in Louisiana. I have no idea on the timing or how I'm going to create a service here, but I will let you know through this blog and the newspaper as soon as I do.
Thank you very much, everyone, for your support and understanding through this very intense, condensed process. Being willing to get your information about your friend and family member through this impersonal medium was and is a huge gift for me. Thank you.
And a bit of an awkward request: while we thank you for your thoughts and your desire to give comfort to us, please don't send flowers to the house. Aunt Eliska is allergic to many of them and I always forget to give them water.
Tuesday, September 8, 2009
Imminently Dying
I've lost track of time but I think it was 36 hours ago, Janette's blood pressure spiked and nothing would bring it down. We thought she would have a stroke, an embolism, a heart attack or simply die. She did none of the above. After three hours, she rolled on her side and went back to sleep. Her blood pressure returned to a tolerable high, 180/88 by the next morning, but she did not return to her old self. She focused on this world only when we or her body intruded on her.
Yesterday evening, she had an hour and a half long series of tremors, mini seizures. She was given medication, but I think they only went away on their own. She's had a couple more episodes of small seizures since then. Each hour she is less responsive to outside stimulus. The first night, every family member in town came over and stayed by her bedside on and off all night. I went to sleep when Janette went to sleep to be rested for the next day. Last night, everyone slept someplace in the house in preparation for her leaving us then.
Uncle Dud, Aunt Missy and Clark drove in Saturday night. Janette had been slowing declining from lack of food and drink and cancer, but still much as she had been when I last wrote. Charles Eric also flew in that night. William came over at 3am for the blood pressure crisis. Wendy and Aunt Eliska have been here all along.
First crisis night, she made two jokes in response to us all standing around her bed smiling at her. Yesterday morning, she opened her eyes and looked at me sitting by her bed. I said, "hi," and she gave me a "hi" back. Her eyes drifted closed and she went back to sleep. Around 3:30 yesterday afternoon, she tried to work with the nurse giving her a sponge bath and changing her pajamas. Those are the last interactions with her reaching out to make contact with us that I know about. Now she reacts to us, but it seems more from the place where she rather be left alone.
We were keeping one or two of us (and the nurse) in the room with her all the time. Last night, we had the sense we were crowding her, so we left her in peace (with the nurse) all night. Today, she had no reaction when the nurse, nurse supervisor and I were whispering together in her room for a half hour. So, we'll probably spend more time with her today. We are all very aware of how much she likes to be left alone when she's not feeling well. Now there's the extra irritation potential of pulling her back into this world when she's trying to learn how to be in the next.
We have been thinking for 36 hours that she could go at anytime. Annie, nurse supervisor, volunteered her guess of 48-72 hours, highly qualified with everyone is different and we can't truly predict.
Janette seems comfortable from all perspectives. She was never in pain, except for a headache with the blood pressure spike and that went away with the morphine. She does not act as if she's in pain now. And the Hospice nurses' main focus is keep her comfortable and pain free.
She didn't really want visitors before, except she asked when her siblings were coming, and we won't be allowing any visits, now. You can talk with her from inside yourself from wherever you're at. I'm sure some part of her will hear you and may even answer. Say your good-bye's and last words in this way, maybe it will help her in moving on.
My focus has been with my mother these last five days. Moving out of it to write this blog and interact with you is not easy for me. I will not post again until she dies. I will try to call some folks and ask some to call other folks but I will pass that message on to many of you by posting here. Here I am abdicating this one social responsibility: I will not be calling all Janette's closer friends to tell you she is gone. It will be time for me to stop being the caretaker, advocate, organizer and communicator and finally be just a grieving daughter.
Yesterday evening, she had an hour and a half long series of tremors, mini seizures. She was given medication, but I think they only went away on their own. She's had a couple more episodes of small seizures since then. Each hour she is less responsive to outside stimulus. The first night, every family member in town came over and stayed by her bedside on and off all night. I went to sleep when Janette went to sleep to be rested for the next day. Last night, everyone slept someplace in the house in preparation for her leaving us then.
Uncle Dud, Aunt Missy and Clark drove in Saturday night. Janette had been slowing declining from lack of food and drink and cancer, but still much as she had been when I last wrote. Charles Eric also flew in that night. William came over at 3am for the blood pressure crisis. Wendy and Aunt Eliska have been here all along.
First crisis night, she made two jokes in response to us all standing around her bed smiling at her. Yesterday morning, she opened her eyes and looked at me sitting by her bed. I said, "hi," and she gave me a "hi" back. Her eyes drifted closed and she went back to sleep. Around 3:30 yesterday afternoon, she tried to work with the nurse giving her a sponge bath and changing her pajamas. Those are the last interactions with her reaching out to make contact with us that I know about. Now she reacts to us, but it seems more from the place where she rather be left alone.
We were keeping one or two of us (and the nurse) in the room with her all the time. Last night, we had the sense we were crowding her, so we left her in peace (with the nurse) all night. Today, she had no reaction when the nurse, nurse supervisor and I were whispering together in her room for a half hour. So, we'll probably spend more time with her today. We are all very aware of how much she likes to be left alone when she's not feeling well. Now there's the extra irritation potential of pulling her back into this world when she's trying to learn how to be in the next.
We have been thinking for 36 hours that she could go at anytime. Annie, nurse supervisor, volunteered her guess of 48-72 hours, highly qualified with everyone is different and we can't truly predict.
Janette seems comfortable from all perspectives. She was never in pain, except for a headache with the blood pressure spike and that went away with the morphine. She does not act as if she's in pain now. And the Hospice nurses' main focus is keep her comfortable and pain free.
She didn't really want visitors before, except she asked when her siblings were coming, and we won't be allowing any visits, now. You can talk with her from inside yourself from wherever you're at. I'm sure some part of her will hear you and may even answer. Say your good-bye's and last words in this way, maybe it will help her in moving on.
My focus has been with my mother these last five days. Moving out of it to write this blog and interact with you is not easy for me. I will not post again until she dies. I will try to call some folks and ask some to call other folks but I will pass that message on to many of you by posting here. Here I am abdicating this one social responsibility: I will not be calling all Janette's closer friends to tell you she is gone. It will be time for me to stop being the caretaker, advocate, organizer and communicator and finally be just a grieving daughter.
Wednesday, September 2, 2009
Now with 24 Hour Nursing Care
Hospice has now found nurses to fill all 3 shifts for us, 8-4, 4-midnight, midnight-8. Annie, our nurse supervisor, was here this morning. She has no plans to take us off continuous care again. All nurses are helping Janette be as comfortable and maintain as much dignity and autonomy as possible.
Janette was moving better after I last wrote and seemed more alert. She's still alert, still shuffling her feet well enough, but is more tired today. Sleepy, she says about herself.
She hasn't had much food for 3 weeks now and there's only so long her body can maintain itself on minimal fluids. Her condition is holding stable with those little rolls of up and down. Hospice does not classify her as "imminently dying." Annie tells me when she gets there, it will be obvious. Then, how much time she takes is unpredictable, 2 days, 30 minutes, it's completely her own timing.
Janette has no pain and no discomfort. She seems to have no needs, emotional or otherwise. Well, except for autonomy. As weak as she is now, she still insisted on cleaning own face and teeth this morning. She also told Wendy to sit up straight when she joined us at breakfast. Otherwise, she doesn't seem to need or want to interact with us or the world. It's all part of the normal dying process, and even that normal is different for each person.
Today, Sept 2, is my father's birthday. He would be 83 today.
Janette was moving better after I last wrote and seemed more alert. She's still alert, still shuffling her feet well enough, but is more tired today. Sleepy, she says about herself.
She hasn't had much food for 3 weeks now and there's only so long her body can maintain itself on minimal fluids. Her condition is holding stable with those little rolls of up and down. Hospice does not classify her as "imminently dying." Annie tells me when she gets there, it will be obvious. Then, how much time she takes is unpredictable, 2 days, 30 minutes, it's completely her own timing.
Janette has no pain and no discomfort. She seems to have no needs, emotional or otherwise. Well, except for autonomy. As weak as she is now, she still insisted on cleaning own face and teeth this morning. She also told Wendy to sit up straight when she joined us at breakfast. Otherwise, she doesn't seem to need or want to interact with us or the world. It's all part of the normal dying process, and even that normal is different for each person.
Today, Sept 2, is my father's birthday. He would be 83 today.
Monday, August 31, 2009
Changes as of Last Thursday
When Janette saw that she was not recovering her strength as fast as she wanted and that she was stymied from doing what she wanted whenever she wanted, she decided she was finished with trying. Janette, Aunt Jackie, our Hospice nurse supervisor and I had a long conversation that afternoon. Janette made it very clear that she does not want to try anymore. The day before she had refused all food and drink except what was necessary to take her medication for blood pressure and seizure prevention.
She is actively trying to bring her death closer and it is working.
Our family left Friday morning. We lost our continuous care coverage the same time. A nurse comes in from midnight to 8 am, so I can sleep, but other than that, it's just me. I'm the only one left with the strength to lift her out of bed and into the wheelchair and then on to whatever surface we're heading for.
Janette now has more side effects from the cancer and from not eating. She can no longer lift herself with her legs. The last 24 hours she almost is not able to shuffle her feet to pivot her body around while I'm supporting her weight. Her blood pressure is continuously high. The last 24 hours, her face turns grey when she doesn't use oxygen. Of course, she doesn't like using oxygen. She doesn't like being helped. She doesn't like being told she has to wait for me to come, but the last 24 hours she hasn't been fighting me as much or is as frustrated with me. I'm sure she doesn't have the energy anymore. And maybe she's coming to some inner peace
Most of the time since I last wrote, she's been in bed. The last two days, she's spent time on the sofa in the family room, propped up on pillows. The night nurse reports her sleep has not been so good.
And Hospice just called. Where back on continuous care. Janette's condition has deteriorated too rapidly for me to continue to do the 16 hours on my own. Hospice seems to have a shortage of nurses right now, so coverage will be a bit sporadic. But a nurse is on her way and will be here at 5 pm.
She is actively trying to bring her death closer and it is working.
Our family left Friday morning. We lost our continuous care coverage the same time. A nurse comes in from midnight to 8 am, so I can sleep, but other than that, it's just me. I'm the only one left with the strength to lift her out of bed and into the wheelchair and then on to whatever surface we're heading for.
Janette now has more side effects from the cancer and from not eating. She can no longer lift herself with her legs. The last 24 hours she almost is not able to shuffle her feet to pivot her body around while I'm supporting her weight. Her blood pressure is continuously high. The last 24 hours, her face turns grey when she doesn't use oxygen. Of course, she doesn't like using oxygen. She doesn't like being helped. She doesn't like being told she has to wait for me to come, but the last 24 hours she hasn't been fighting me as much or is as frustrated with me. I'm sure she doesn't have the energy anymore. And maybe she's coming to some inner peace
Most of the time since I last wrote, she's been in bed. The last two days, she's spent time on the sofa in the family room, propped up on pillows. The night nurse reports her sleep has not been so good.
And Hospice just called. Where back on continuous care. Janette's condition has deteriorated too rapidly for me to continue to do the 16 hours on my own. Hospice seems to have a shortage of nurses right now, so coverage will be a bit sporadic. But a nurse is on her way and will be here at 5 pm.
Tuesday, August 25, 2009
Still Better
Janette walked some this evening while I was out and her sisters were in. She walked to the bathroom with two people supporting her and the same to her bedroom much later. She stayed awake for a long time today. When I came home from dinner with Lee, she was sitting on the couch watching a movie with everyone.
Janette's blood pressure is currently staying 150/70 or below. Her cardiologist almost doubled her beta blocker dosage. We wish the readings were even lower, back to where they use to be, but we're happy they are, currently, not jumping to 209/103.
"Currently" is still an important word. We may be on a steady climb to better health or we may be on an up-down ride. The ups seem to be better and longer than the downs, especially today. Our Hospice nurse still thinks we need continuous care, so we have 24 hour nursing coverage. That's a huge break for me and I think for Janette, too. I can't imagine how I would have continued non-stop to monitor her health and blood pressure and everything she couldn't do for herself after the focused intensity of taking care of so much at the hospital. The thought of it makes my stomach hurt. Thank you Hospice!
My 3 hour "dinner" tonight with Lee was a wonderful break. Each day, I'm more removed from the intensity of the crisis. My Aunts and Uncle, cousins and sister did so much! Even with all their work, my days were still full with the logistics of having Janette back home and the mini health crises she kept having. How do people do this own their own? Thanks everyone! I know it's not only for me, but for your sister, too.
Janette's blood pressure is currently staying 150/70 or below. Her cardiologist almost doubled her beta blocker dosage. We wish the readings were even lower, back to where they use to be, but we're happy they are, currently, not jumping to 209/103.
"Currently" is still an important word. We may be on a steady climb to better health or we may be on an up-down ride. The ups seem to be better and longer than the downs, especially today. Our Hospice nurse still thinks we need continuous care, so we have 24 hour nursing coverage. That's a huge break for me and I think for Janette, too. I can't imagine how I would have continued non-stop to monitor her health and blood pressure and everything she couldn't do for herself after the focused intensity of taking care of so much at the hospital. The thought of it makes my stomach hurt. Thank you Hospice!
My 3 hour "dinner" tonight with Lee was a wonderful break. Each day, I'm more removed from the intensity of the crisis. My Aunts and Uncle, cousins and sister did so much! Even with all their work, my days were still full with the logistics of having Janette back home and the mini health crises she kept having. How do people do this own their own? Thanks everyone! I know it's not only for me, but for your sister, too.
Sunday, August 23, 2009
Going Well, Getting Stronger
Things are going well. Janette continues to gain strength. Last night she slept all the way through with very little coughing. We could see the difference in her face this morning. She insists on doing more and more by herself and is highly motivated to get out of that wheelchair and do everything on her own. Well, I'm sure she's still willing to let me shop and clean.
Her swallowing also improves. She deeply longs just to drink some water. Oh, right: her ability to swallow worsened in the hospital. Why? I don't know. We certainly have enough possible reasons to choose from. So, Janette needed and needs all her food pureed and all her liquids thickened to the consistency of honey. All she wants right now is a drink of plain, unthickened water. This evening we tried 4oz of orange juice half as thick as usual. I made her promise to concentrate intently on swallowing, keep her chin down the whole time, sip slowly, don't try to talk, and so on. She obeyed all the rules and didn't choke or cough once. Two hours later she successfully did it all again.
If she would eat and drink this way all the time, we would rarely have problems and she would get a lot more liquids inside her. But anyone who knows my mother well or knows other members of her family knows this is genetically impossible--the slow, careful, not talking or doing other things at the same time part.
Janette seems to be deeply committed to recovering from her seizures and ventilator traumas. She has not given up, though she realizes the cancer is "worse" than she thought. I don't talk with her about her emotional state right now and she is surrounded by her siblings when she is not sleeping.
She still tires easily, though less so, and is still sleeping much. I think all the sleeping is good. I think we were both very sleep deprived from 5 (6? I lost track) days in the hospital. How can anyone heal in that environment? Not die, yes. Recover, yes. But heal? I don't know. All our hospital nurses and techs were wonderful. It's just so noisy in there with so many interruptions!
We still have consistent care from hospice. If she keeps getting better, I'm sure that will change. I also have all my Aunts and Uncle and my sister helping me right now, wanting to do all the cooking and cleaning up after themselves and insisting that I rest and recover. I'm still tired, but much better. I feel the mental, physical and emotional load lifted somewhat from my shoulders. Thank you, everyone! Aunt Eliska was also carrying this weight with me. I wonder if she is feeling eased or if she is still shouldering as much as she was before. She seems to be doing more physical work. I'm staying home with Janette and she's running everyone around town and back and forth to the airport.
I also really like having all of them here, all together, minus Uncle Terry and, of course, Aunt Sis and Uncle Carroll. I don't get to be with them as often as you all do over there. This is a wonderful treat for me.
And I know that many friends of Janette are reading this, too. We've had a couple of neighbors stop by for a few minutes. She's so often sleeping or tired from talking with her siblings that more than half the time, we turn people away at the door. She not quite ready for visitors. Let's let her spend her strength healing and recovering. Visits beyond 2 minutes seem to wipe her out. With her family, she can just tune them out or listen to them talk among themselves. When friends stop by, she will put all her energy and focus on visiting with you.
Her swallowing also improves. She deeply longs just to drink some water. Oh, right: her ability to swallow worsened in the hospital. Why? I don't know. We certainly have enough possible reasons to choose from. So, Janette needed and needs all her food pureed and all her liquids thickened to the consistency of honey. All she wants right now is a drink of plain, unthickened water. This evening we tried 4oz of orange juice half as thick as usual. I made her promise to concentrate intently on swallowing, keep her chin down the whole time, sip slowly, don't try to talk, and so on. She obeyed all the rules and didn't choke or cough once. Two hours later she successfully did it all again.
If she would eat and drink this way all the time, we would rarely have problems and she would get a lot more liquids inside her. But anyone who knows my mother well or knows other members of her family knows this is genetically impossible--the slow, careful, not talking or doing other things at the same time part.
Janette seems to be deeply committed to recovering from her seizures and ventilator traumas. She has not given up, though she realizes the cancer is "worse" than she thought. I don't talk with her about her emotional state right now and she is surrounded by her siblings when she is not sleeping.
She still tires easily, though less so, and is still sleeping much. I think all the sleeping is good. I think we were both very sleep deprived from 5 (6? I lost track) days in the hospital. How can anyone heal in that environment? Not die, yes. Recover, yes. But heal? I don't know. All our hospital nurses and techs were wonderful. It's just so noisy in there with so many interruptions!
We still have consistent care from hospice. If she keeps getting better, I'm sure that will change. I also have all my Aunts and Uncle and my sister helping me right now, wanting to do all the cooking and cleaning up after themselves and insisting that I rest and recover. I'm still tired, but much better. I feel the mental, physical and emotional load lifted somewhat from my shoulders. Thank you, everyone! Aunt Eliska was also carrying this weight with me. I wonder if she is feeling eased or if she is still shouldering as much as she was before. She seems to be doing more physical work. I'm staying home with Janette and she's running everyone around town and back and forth to the airport.
I also really like having all of them here, all together, minus Uncle Terry and, of course, Aunt Sis and Uncle Carroll. I don't get to be with them as often as you all do over there. This is a wonderful treat for me.
And I know that many friends of Janette are reading this, too. We've had a couple of neighbors stop by for a few minutes. She's so often sleeping or tired from talking with her siblings that more than half the time, we turn people away at the door. She not quite ready for visitors. Let's let her spend her strength healing and recovering. Visits beyond 2 minutes seem to wipe her out. With her family, she can just tune them out or listen to them talk among themselves. When friends stop by, she will put all her energy and focus on visiting with you.
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