Dear Everyone,
John and I have settled on a date for Anita's memorial gathering. It will be held at 2:00 p.m. on Saturday May 19, 2012 at the Unitarian Church that John attends. I will update this blogsite with the exact address later, but I wanted to alert you all to the date and time so that you can reserve it on your calendars.
The following is a posting that Mother herself composed back in June 2007 when she was uncertain whether she would live or not. It is as though she is saying it for a second time:
Monday, 11 June 2007
Post #2: A Note from Anita
Dear Ones,
Thanks, dear friends and some family, for your kind emails, flowers and other thoughtful, kind communications. I haven't been able to respond to all because I so definitely have my up and down times, where I'm doing all I can to hang in there (which, as you know, isn't like me.) Well, tomorrow's my big "get-this-show-on-the-road, Chemo Day."
Yes, finally--if they get the heart echo stuff done today--I'll get the first fierce knockout round of chemo for this Lymphoma madness: three hours Tuesday and five hours Wednesday, which they warn me might or might not let me survive. But I'm a born survivor, so forget that! I might vomit my head off for a few days and end up wearing a wig quite quickly, but I am opting that I'll soon get over all that, the tumors will shrink, and ultimately I'll hear that magic word: "Remission."
However, just in case I kick the bucket, please remember this: I've had virtually 80 full years of hugging life and kicking you-know-what, I've had wonderful friends and family, and at least ONE great husband--though even the children's father gave me the gift of three lovely kids. (As with most parental-children situations--mine certainly no exception--we have had our moments; but in the long run, they, as with brothers and sisters and most in-laws and a few very choice friends, they are all winners.) Naturally, we all err--and err again--and along the way collect regretful sighs and reasons to ask forgiveness. But, hopefully, we shed our own particular aura of joy and kindness and goodness along with the unmentionables in our own circular, circumscribed and very special little worlds, and gratefully receive some stronger lights from the larger worlds out there spinning and spinning through time eternal. And I, for one, hope when the curtain opens for my time to enter the great silent halls of death, I'll at least be allowed to lie down with pleasant dreams, if not get to fully embrace the wonders supposedly that make up Heaven on the other side of St. Peter's gate, or suffer the agonizing horrors we hear hell and the devil's pitchfork might have in store for us.
Who knows! But at this late date, I can't go back and adopt an angelic pose and adorn myself with a glittering halo. They say it helps to get baptized. Well, once, at 12 years of age, I did that too. Lined up with two other giggly girls, each of us with a big crush on the yearly traveling preacher. I think the preacher knew exactly what he had in his hands ready to dunk under the warm, muddy creek water. The baptism wasn't exactly what I had in mind. He pushed me under as far as he could, my dress billowed up like a parachute, and I came up choking and looking like a drowned rat (not exactly a romantic dream come true.) But though I can't say that gawky attempt got me any gold stars in the getting-to-heaven trek, at least I was "baptized"--maybe, for all I know now, he was a wandering Holy Roller. Anyway, just in case, a few years later, feeling remorse for some sin--or sins--wanting to make my mother look a little happier with her second daughter, whom she had probably regretfully named after her, I got myself solemnly "Sprinkled", in the traditional "Methodist" way. (Though I don't recall any spectacular lasting change during my teenage rebellious years.)
So, okay--I'm not afraid. I've even shed my fear of getting shoved in the cremation oven, and agreed to be cremated, where both John and my ashes will--at our separate designated times of death--be put in thick plastic urns that get cemented to keep out critters and such, and put in the ground side-by-side in--guess where!--since John is a veteran of World War II, and we've been legally married these 43 years, we'll get to be buried in the National Military cemetery closest to us, which is in our county, Riverside, and have little headstones with our names. So that part is taken care of, paid for, and done the most economical way possible. When John's time comes, he can even have a 21-gun salute, we were told by the prim little woman dressed in pink and aqua (and wearing hose, in the hot Desert!), who kept tossing her long blond hair over one shoulder and who, I admit, looked a little shocked when I said, "Then, John has to die first because I want to be sure my hero in life goes out with 21-guns in a very fitting, final salute." (She tried to make a chuckle, as we signed the bottom line, but it wasn't very convincing--though when was that a field of endeavor with much sense of humor?)
Living and dying is the natural, unavoidable course of what makes up "life." I don't say I like all this cancer stuff that goes with it. And all my life I've hated vomiting. But if it's my time, so be it. Lift a glass in toast to knowing I did all I was big enough to do. I hope the ledger gives me more credits of my good-better-or best deeds so they'll rank over my worse, worser and worst ones, as my favorite newscaster singles people out on "Countdown." And if having loved a whole lot, taken the many chances, the risks I have, I hope the results of my trials and tribulations check out on the favorable side. That, then, maybe, my ashes will try kicking up some dust inside the tidy little concreted encasement from some "restless legs" syndrome I seem to have in my DNA. That just maybe the HE or SHE or that nameless, formless great spirit called God will forgive me. And who knows, maybe on my Judgment day, God will fudge a little on my behalf to balance the seesaw enough to at least let me lie peacefully, side by side, next to my beloved John, with maybe some lost angel dipping a dusty wing in a kind of salute as it flutters by on a warm and moonlit summer's night.
Love,
Anita Kornfeld
Thursday 29 March 2012
Thursday 22 March 2012
Post #20: Memorial Tribute from HK Lane Realtors to Anita
The following is the memorial tribute to Anita sent out today by HK Lane (the real estate company with which Mother was a realtor) to all of its agents:
We are very sad to announce the recent passing of Anita Kornfeld on Saturday, March 17th. Anita was a beloved friend and colleague to everyone that had the pleasure of knowing her.
Anita is survived by her husband, John Kornfeld and three children. She and her husband John moved permanently to Palm Desert from Marin County. Anita was quickly recognized by not only those in Real Estate who knew of her top-producing record with Coldwell Banker in Marin County, where she achieved top honors, including being one of their Top Twenty Agents in Northern California; but she was welcomed by writers who knew her as a nationally published novelist. Kornfeld was a leader of literary seminars at the Santa Barbara Writers Conferences during the 1980s; guest lecturing on Creative Writing abroad the Royal Viking Cruise Lines, as well as helping writers locally through the Palm Springs Writers’ Guild.
She first got her license in 1987 and began devoting passionate and diligent service to thousands of buyers and sellers. Being an esteemed realtor for Fred Sands and then re-joining her favorite management team she had known so well at Fred Sands Desert Realty- Harvey Katofsky and Ron Gerlich- in their Palm Desert office of HK Lane.
Harvey Katofsky stated, “We have lost a classy and wonderful person, equipped with a quick wit and undeniable loyalty to our company. My heart goes out to John and their children. I personally will never forget the energetic and dynamic Anita Kornfeld.”
Ron Gerlich added, “Anita was one of the most unforgettable people I have ever met. Having worked together over the past 17 years, we acquired a very special bond. She will be truly missed by all who knew her.”
Anita will be extremely missed by everyone in the HK Lane family.
There will be a memorial gathering in her honor at a later date.
We are very sad to announce the recent passing of Anita Kornfeld on Saturday, March 17th. Anita was a beloved friend and colleague to everyone that had the pleasure of knowing her.
Anita is survived by her husband, John Kornfeld and three children. She and her husband John moved permanently to Palm Desert from Marin County. Anita was quickly recognized by not only those in Real Estate who knew of her top-producing record with Coldwell Banker in Marin County, where she achieved top honors, including being one of their Top Twenty Agents in Northern California; but she was welcomed by writers who knew her as a nationally published novelist. Kornfeld was a leader of literary seminars at the Santa Barbara Writers Conferences during the 1980s; guest lecturing on Creative Writing abroad the Royal Viking Cruise Lines, as well as helping writers locally through the Palm Springs Writers’ Guild.
She first got her license in 1987 and began devoting passionate and diligent service to thousands of buyers and sellers. Being an esteemed realtor for Fred Sands and then re-joining her favorite management team she had known so well at Fred Sands Desert Realty- Harvey Katofsky and Ron Gerlich- in their Palm Desert office of HK Lane.
Harvey Katofsky stated, “We have lost a classy and wonderful person, equipped with a quick wit and undeniable loyalty to our company. My heart goes out to John and their children. I personally will never forget the energetic and dynamic Anita Kornfeld.”
Ron Gerlich added, “Anita was one of the most unforgettable people I have ever met. Having worked together over the past 17 years, we acquired a very special bond. She will be truly missed by all who knew her.”
Anita will be extremely missed by everyone in the HK Lane family.
There will be a memorial gathering in her honor at a later date.
Wednesday 21 March 2012
Post #19: Link to Anita's Obituary Page at The Desert Sun
The following is the link to The Desert Sun obituary page for Anita:
http://www.legacy.com/obituaries/thedesertsun/obituary.aspx?n=anita-clay-kornfeld&pid=156588684
Already there have been some beautiful comments posted. Thank you to everyone for your lovely thoughts.
Melissa
http://www.legacy.com/obituaries/thedesertsun/obituary.aspx?n=anita-clay-kornfeld&pid=156588684
Already there have been some beautiful comments posted. Thank you to everyone for your lovely thoughts.
Melissa
Post #18: Published Obituary
Hello Everyone,
Anita's obituary will be published in The Desert Sun newspaper of Palm Springs, California for three consecutive days starting today Wed. March 21, Thurs. March 22 and Fri. March 23. The obituary is identical to the one I posted on this blogsite except that it is accompanied with a recent picture of Mother.
After discussion among the family, Anita's ashes will not be scattered but instead will be interred at the National Cemetery in Riverside, California. John's ashes, when the time comes, will be interred beside her. This is an arrangement that both Anita and John had previously decided upon. To the immediate family's knowledge, Anita never expressed a desire to have her ashes scattered nor a place where she would want them to be scattered.
As I mentioned before, no funeral service is being planned. However, a memorial service will be scheduled at a future date that has not yet been determined. Right now, John is emotionally not inclined to think about, much less plan, a service. His view of course could change at any time, so I will keep you updated.
Melissa
Anita's obituary will be published in The Desert Sun newspaper of Palm Springs, California for three consecutive days starting today Wed. March 21, Thurs. March 22 and Fri. March 23. The obituary is identical to the one I posted on this blogsite except that it is accompanied with a recent picture of Mother.
After discussion among the family, Anita's ashes will not be scattered but instead will be interred at the National Cemetery in Riverside, California. John's ashes, when the time comes, will be interred beside her. This is an arrangement that both Anita and John had previously decided upon. To the immediate family's knowledge, Anita never expressed a desire to have her ashes scattered nor a place where she would want them to be scattered.
As I mentioned before, no funeral service is being planned. However, a memorial service will be scheduled at a future date that has not yet been determined. Right now, John is emotionally not inclined to think about, much less plan, a service. His view of course could change at any time, so I will keep you updated.
Melissa
Monday 19 March 2012
Post #17: Obituary
ANITA CLAY KORNFELD, 84, of Palm Desert died March 17, 2012 in Palm Desert. Born to Harry Walker and Anita Reynolds Walker, Anita passed away surrounded by son Edwin (Johnson), daughters Melissa (Luce) and Marcia (Clay) [mother of grandson Nicholas], and husband John Kornfeld.
A world traveler and writer, Anita is remembered by her first semi-autobiographical novel “In a Bluebird’s Eye” (published by Holt, Rinehart & Winston) and her three-generational saga “Vintage” about a Napa Valley wine grower’s family (published by Simon & Schuster and Bantam).
A gifted writing teacher and lecturer, a woman who loved life and lived it to the fullest, Anita was a “force of nature” who continues to inspire her family and friends and those who knew her.
In lieu of flowers, please donate in her name to Planned Parenthood or to another organization that supports women’s rights.
There will be a memorial gathering in her honor at a later date.
A world traveler and writer, Anita is remembered by her first semi-autobiographical novel “In a Bluebird’s Eye” (published by Holt, Rinehart & Winston) and her three-generational saga “Vintage” about a Napa Valley wine grower’s family (published by Simon & Schuster and Bantam).
A gifted writing teacher and lecturer, a woman who loved life and lived it to the fullest, Anita was a “force of nature” who continues to inspire her family and friends and those who knew her.
In lieu of flowers, please donate in her name to Planned Parenthood or to another organization that supports women’s rights.
There will be a memorial gathering in her honor at a later date.
Post #16: New Road Ahead
Dear Everyone,
As you may imagine, the past two days have been quite difficult. Stunned shock and grief would be a good description, particularly for John. He has moments of sheer incredulousness that Anita is gone, half-expecting her to walk into the room any minute. It will take John some time to develop a new daily routine and new sense of normalcy.
So to aid him in that transition, I encourage everyone to gently keep John involved in social activities, both at his home and by going out. Be aware that, at the moment, he also needs time alone for quiet contemplation. Consequently, he may turn down invitations preferring to stay at home, but please don't get discouraged. John also needs a certain amount of pleasant distraction from his sorrow and to develop a new routine without Mother. He is doing fine relating with friends at the moment, is able to engage in conversation and even laughing. These moments are interspersed with moments of great sadness, but that is to be expected. So I think a slowly increasing frequency of lunch and dinner invitations, bridge games, trips to the dog-park, etc. will all help him over time.
John is going to The Desert Sun today to submit a picture and obituary. It will be published twice in the newspaper and I will put it in my next posting on this blogsite. There will be no funeral service, rather a memorial service will be planned for some date in the future. As for me, I will be here until March 30 at which time I will leave for San Francisco before flying home on April 3rd.
Melissa
As you may imagine, the past two days have been quite difficult. Stunned shock and grief would be a good description, particularly for John. He has moments of sheer incredulousness that Anita is gone, half-expecting her to walk into the room any minute. It will take John some time to develop a new daily routine and new sense of normalcy.
So to aid him in that transition, I encourage everyone to gently keep John involved in social activities, both at his home and by going out. Be aware that, at the moment, he also needs time alone for quiet contemplation. Consequently, he may turn down invitations preferring to stay at home, but please don't get discouraged. John also needs a certain amount of pleasant distraction from his sorrow and to develop a new routine without Mother. He is doing fine relating with friends at the moment, is able to engage in conversation and even laughing. These moments are interspersed with moments of great sadness, but that is to be expected. So I think a slowly increasing frequency of lunch and dinner invitations, bridge games, trips to the dog-park, etc. will all help him over time.
John is going to The Desert Sun today to submit a picture and obituary. It will be published twice in the newspaper and I will put it in my next posting on this blogsite. There will be no funeral service, rather a memorial service will be planned for some date in the future. As for me, I will be here until March 30 at which time I will leave for San Francisco before flying home on April 3rd.
Melissa
Saturday 17 March 2012
Post #15: Note from John Kornfeld
John has asked me to request that instead of sending flowers or other items in memory of Anita, that he would prefer donations be made in Anita's honor to any institution, organization, or cause dedicated to women's rights and welfare - whether those rights be legal, political, health, reproductive, or other - any which benefit women as a whole.
Post #14: Safe Journey
To all the dear family, friends, and persons who have loved and been known and loved by Anita Kornfeld:
It is with great sadness that I must tell you that Mother passed away this morning at the Manor Care facility at some time between 3:00 and 5:00 a.m. The night nurse had made rounds at 3:00 a.m. and Anita was alive. When she made her rounds at 5:00 a.m., Anita was not breathing and when checked showed no vital signs. So her official time of passing is 5:00 a.m. on Saturday, March 17, 2012.
We received the phone call around 5:30 a.m. and John, Marcia and I went out to Manor Care immediately. Mother looked very peaceful, like a pale statue in repose. Her features seemed soft and as though she was just resting and would open her eyes at any minute. Her face showed no signs of distress. I believe that she gently and softly just slipped away in the night. I think that was the way she wanted it.
We are glad that her final days were spent in such a homelike room with pictures and momentos from her life about her. She had visits from many, many people who meant so much to her and were a true comfort to her. Her passing, although tremendously devastating, is in fact a blessing. She is free now from the trap that she was in.
The funeral home came to pick her up around 7:30 a.m. Mother will be cremated however there will be no funeral service. As of right now, no plans have been made for a memorial service, but I envision that John may want to hold one in the future. I will keep this blogsite updated with any new information along that line. If a memorial service is planned, I will work to make sure that there is sufficient lead time so that persons who want to attend will have time to make their personal schedule and travel arrangements.
With a heavy heart but also with relief that Mother has been released from what for her was an intolerable condition, I wish her a safe journey and all of you peace.
Melissa
It is with great sadness that I must tell you that Mother passed away this morning at the Manor Care facility at some time between 3:00 and 5:00 a.m. The night nurse had made rounds at 3:00 a.m. and Anita was alive. When she made her rounds at 5:00 a.m., Anita was not breathing and when checked showed no vital signs. So her official time of passing is 5:00 a.m. on Saturday, March 17, 2012.
We received the phone call around 5:30 a.m. and John, Marcia and I went out to Manor Care immediately. Mother looked very peaceful, like a pale statue in repose. Her features seemed soft and as though she was just resting and would open her eyes at any minute. Her face showed no signs of distress. I believe that she gently and softly just slipped away in the night. I think that was the way she wanted it.
We are glad that her final days were spent in such a homelike room with pictures and momentos from her life about her. She had visits from many, many people who meant so much to her and were a true comfort to her. Her passing, although tremendously devastating, is in fact a blessing. She is free now from the trap that she was in.
The funeral home came to pick her up around 7:30 a.m. Mother will be cremated however there will be no funeral service. As of right now, no plans have been made for a memorial service, but I envision that John may want to hold one in the future. I will keep this blogsite updated with any new information along that line. If a memorial service is planned, I will work to make sure that there is sufficient lead time so that persons who want to attend will have time to make their personal schedule and travel arrangements.
With a heavy heart but also with relief that Mother has been released from what for her was an intolerable condition, I wish her a safe journey and all of you peace.
Melissa
Friday 16 March 2012
Post #13: Anita's Condition
Dear Everyone,
As you now know, Mother will be staying at Manor Care for the duration of her hospice care. This is a miraculous development and has given John and the rest of us a certain measure of relief. Although John and the family were prepared to handle Anita coming home for hospice care and to take on 24/7 care of her, the emotional and physical toll and drain on John, in my mind, would have been totally unacceptable and would have severely compromised his own health. Being at a professional facility enables constant monitoring by professionals - something not possible at home. As Mother's condition declines, her medication and other needs will change accordingly. These needs will be more swiftly perceived and acted upon if she stays at Manor Care.
A dear friend of Anita's asked about her mood. As of yesterday, I think some of her extreme frustration has diminished a bit but I sense that she really wishes she was making a more speedy exit, so to speak. I would definitely say that she is, at the least, still annoyed. When John or Marcia and I are there, she softens. She likes to stroke our hair and hold our hands. She appears interested in listening to our conversation. She is "rolling her eyes" and "puckering her forehead in exasperation" much less frequently. Even then, it is very difficult to know exactly what she is thinking. As everyone knows, Mom is a very complex person. And now with the doctor saying that part of her brain is gone forever and part of it still there without our knowing exactly which part is gone or present, it makes it even harder to gauge exactly what she is thinking and feeling.
But her face still breaks into a smile when she receives visitors. She still looks like she is comprehending conversation and is aware of who is there. Yesterday Marcia and I read to Mother a short humorous short-story. Whether she understood the whole thing or not I have no idea. But she smiled "amused" smiles at appropriate points in the narrative, had her eyes opened and focused on us the whole time, and consequently appeared to be following along.
Upon leaving her yesterday Marcia and I noticed that she seemed to be in pain. I went to get the nurse who crushed two Tylenol tablets and stirred them into a small amount of chocolate pudding. The nurse and I told Mother that this was pain medication, not nutrition, and that she should take it. Luckily Mother did take a spoonful of the concoction, but she would not take more than that. I am hoping that the amount was sufficient to relieve her discomfort. She is not yet being given morphine nor has she yet been placed on oxygen.
Melissa
As you now know, Mother will be staying at Manor Care for the duration of her hospice care. This is a miraculous development and has given John and the rest of us a certain measure of relief. Although John and the family were prepared to handle Anita coming home for hospice care and to take on 24/7 care of her, the emotional and physical toll and drain on John, in my mind, would have been totally unacceptable and would have severely compromised his own health. Being at a professional facility enables constant monitoring by professionals - something not possible at home. As Mother's condition declines, her medication and other needs will change accordingly. These needs will be more swiftly perceived and acted upon if she stays at Manor Care.
A dear friend of Anita's asked about her mood. As of yesterday, I think some of her extreme frustration has diminished a bit but I sense that she really wishes she was making a more speedy exit, so to speak. I would definitely say that she is, at the least, still annoyed. When John or Marcia and I are there, she softens. She likes to stroke our hair and hold our hands. She appears interested in listening to our conversation. She is "rolling her eyes" and "puckering her forehead in exasperation" much less frequently. Even then, it is very difficult to know exactly what she is thinking. As everyone knows, Mom is a very complex person. And now with the doctor saying that part of her brain is gone forever and part of it still there without our knowing exactly which part is gone or present, it makes it even harder to gauge exactly what she is thinking and feeling.
But her face still breaks into a smile when she receives visitors. She still looks like she is comprehending conversation and is aware of who is there. Yesterday Marcia and I read to Mother a short humorous short-story. Whether she understood the whole thing or not I have no idea. But she smiled "amused" smiles at appropriate points in the narrative, had her eyes opened and focused on us the whole time, and consequently appeared to be following along.
Upon leaving her yesterday Marcia and I noticed that she seemed to be in pain. I went to get the nurse who crushed two Tylenol tablets and stirred them into a small amount of chocolate pudding. The nurse and I told Mother that this was pain medication, not nutrition, and that she should take it. Luckily Mother did take a spoonful of the concoction, but she would not take more than that. I am hoping that the amount was sufficient to relieve her discomfort. She is not yet being given morphine nor has she yet been placed on oxygen.
Melissa
Thursday 15 March 2012
Post #12: Success!!!!!
A quick note before the night is through: Thanks to extraordinary efforts by John, Mom is now covered by MediCal and will remain in hospice at the Manor Care facility. The hospice social worker assigned to Mother's case told both of us that she has never seen an approval done in one day! And count on John Kornfeld to do it! This really is a miracle!
So Mother will stay in Room 113 at Manor Care until Monday when she will be transferred to a different wing in the same facilty. My sister Marcia and I approved the new room which will be Room #902. It is a double but Mother will have the window bed - looking out on a tree and flowers. The section also has a beautiful inner courtyard/patio filled with chairs & tables, flower beds, and lots of sunshine. They assured us that Mother would be taken out there periodcially to sit in the sunshine and enjoy being outdoors.
So a remarkable day! More details about today, tomorrow.
Melissa
So Mother will stay in Room 113 at Manor Care until Monday when she will be transferred to a different wing in the same facilty. My sister Marcia and I approved the new room which will be Room #902. It is a double but Mother will have the window bed - looking out on a tree and flowers. The section also has a beautiful inner courtyard/patio filled with chairs & tables, flower beds, and lots of sunshine. They assured us that Mother would be taken out there periodcially to sit in the sunshine and enjoy being outdoors.
So a remarkable day! More details about today, tomorrow.
Melissa
Post #11: Hospice Update
Hello Everyone,
Well, we're down to the wire. Since all California government offices are closed on Fridays, we are racing today to get the MediCal application in. Luckily Mother's assigned social worker from the hospice group is assisting greatly in the process, greasing the wheels with the supervisor down at the County MediCal office. In any event, if the application is not approved, then we will continue with the original plan of bringing Anita home for home hospice care.
If that happens, she will return home this coming Sunday. That means we need to be prepared to get the house arranged by Saturday, the medical bed and equipment delivered, and all made ready by Saturday. We will know, probably by this afternoon, what will be happening. I will post that info as soon as I can once we know it.
Yesterday, my sister Marcia and I spent the afternoon visiting Mother. Her color was good and she appeared alert and comprehending. Marcia and I sat chatting about various topics and Mother seemed to be following what was being said. I brushed her hair with dry shampoo, put body lotion on her arms, cream on her face and little dabs of perfume. She seems to appreciate these little touches.
The nurse attempted to give Anita some congestion medication through a nebulizer (a device that turns liquid medicine into a fine mist spray that is inhaled by the patient). Mom has been developing a congested cough which is normal for patients who are in a lying down position for a long period of time. The nurse put the mask over Mom's nose, turned on the nebulizer and left the room saying she'd be back in 10 minutes. Anita put up with this contraption for about 2 minutes after which she pulled off the mask. I think "stubborn" is her middle name. So I turned the machine off, set the mask aside and waited for the returning nurse. She was not really surprised as Mother has refused just about everything. Apparently yesterday morning Mother did have a very small taste of ice cream, but that was all she had yesterday.
Marcia and I went out to get something to eat and John came to sit with Anita for a couple hours. Following our meal we returned to see her in the early evening. She appeared to me to be experiencing some discomfort, so I asked the nurse for some pain medication. So far, Anita has only been prescribed Tylenol. So the nurse crushed some Tylenol tablets and blended them with a little water. Mother did drink a big swallow of it, but that was it. Undoubtedly it tasted very bitter and Mom accepted a few tablespoons of water afterwards to wash away the taste. At least she did take that. I told Mother to quit being "stoic," that for her to lie there in physical pain was pointless, that she should call the nurse and get pain relief as needed. I hope she heeds that.
So that's where we are as of this morning. Marcia and I will go to visit Mother this afternoon. As I mentioned, we should know what direction we're going by this evening. I will try to update the blog this evening, time permitting.
Melissa
Well, we're down to the wire. Since all California government offices are closed on Fridays, we are racing today to get the MediCal application in. Luckily Mother's assigned social worker from the hospice group is assisting greatly in the process, greasing the wheels with the supervisor down at the County MediCal office. In any event, if the application is not approved, then we will continue with the original plan of bringing Anita home for home hospice care.
If that happens, she will return home this coming Sunday. That means we need to be prepared to get the house arranged by Saturday, the medical bed and equipment delivered, and all made ready by Saturday. We will know, probably by this afternoon, what will be happening. I will post that info as soon as I can once we know it.
Yesterday, my sister Marcia and I spent the afternoon visiting Mother. Her color was good and she appeared alert and comprehending. Marcia and I sat chatting about various topics and Mother seemed to be following what was being said. I brushed her hair with dry shampoo, put body lotion on her arms, cream on her face and little dabs of perfume. She seems to appreciate these little touches.
The nurse attempted to give Anita some congestion medication through a nebulizer (a device that turns liquid medicine into a fine mist spray that is inhaled by the patient). Mom has been developing a congested cough which is normal for patients who are in a lying down position for a long period of time. The nurse put the mask over Mom's nose, turned on the nebulizer and left the room saying she'd be back in 10 minutes. Anita put up with this contraption for about 2 minutes after which she pulled off the mask. I think "stubborn" is her middle name. So I turned the machine off, set the mask aside and waited for the returning nurse. She was not really surprised as Mother has refused just about everything. Apparently yesterday morning Mother did have a very small taste of ice cream, but that was all she had yesterday.
Marcia and I went out to get something to eat and John came to sit with Anita for a couple hours. Following our meal we returned to see her in the early evening. She appeared to me to be experiencing some discomfort, so I asked the nurse for some pain medication. So far, Anita has only been prescribed Tylenol. So the nurse crushed some Tylenol tablets and blended them with a little water. Mother did drink a big swallow of it, but that was it. Undoubtedly it tasted very bitter and Mom accepted a few tablespoons of water afterwards to wash away the taste. At least she did take that. I told Mother to quit being "stoic," that for her to lie there in physical pain was pointless, that she should call the nurse and get pain relief as needed. I hope she heeds that.
So that's where we are as of this morning. Marcia and I will go to visit Mother this afternoon. As I mentioned, we should know what direction we're going by this evening. I will try to update the blog this evening, time permitting.
Melissa
Wednesday 14 March 2012
Post #10: Update
I have received a clarification regarding the ability to keep Anita in the facility. Apparently, Medicare does not pay for long-term hospice, ergo the five days and then the patient has to go home. No hospice can provide long-term care based on Medicare, so changing Mother's hospice provider will do no good.
What will pay for it is if she qualifies for MediCal or goes with private pay arrangements. The cost for private pay is estimated to be from $5000 to $9000 a month depending on the facility. So, John is now calling to see about Anita's MediCal eligibility.
More as soon as I know.
What will pay for it is if she qualifies for MediCal or goes with private pay arrangements. The cost for private pay is estimated to be from $5000 to $9000 a month depending on the facility. So, John is now calling to see about Anita's MediCal eligibility.
More as soon as I know.
Post #9: Anita is at Manor Care
Hello all,
Well the move happened. They came at 12:30 ysterday to pick Anita up from Premier Heatlhcare and move her to Manor Care which is located in Palm Desert much, much closer to her house. As Mother was leaving Premier, Fritzie was arriving for a visit and helped me remove Mother's things from her room there. Thank you Fritzie!
Manor Care Health Services is located at 74-350 Country Club Drive between Portola and Cook Streets on the north side of the street. Mother has a private room. The phone number for Manor Care is (760) 341-0261. This is a much nicer facility than Premier. Her room is homey with furniture that one might find in a house - e.g. wing chairs, a wood entertainment center, wood nightstand, and wood round table. She looks out on a tree and grass. I have met the resident doctor there and he is a wonderfully sensitive and caring person. So Anita is in very good hands at the moment.
She is definitely in hospice care now which means no food or hydration but she will be provided with oxygen (if and when needed) and pain medications as needed. It is important to watch her for indications of pain. So if any of you happen to be visiting her and notice her grimacing, or groaning, or showing signs of discomfort, please report your observations to the nurse on duty. The doctor stated that they have physical indicators they look for with patients, particularly those who can not speak for themselves, which allows the staff to assess her pain level and to decide the type and amount of pain medication to administer.
As for her condition as of yesterday, the doctor stated that she is partly there and partly not. The part that is not there will never return. She is quiet, her color is still good, she casts sweet looks at those about her. I asked the doctor how long she has left. He stated that every individual differs, but that in general from the date a person stops eating it is approximately three weeks. She has already gone without food since March 5 which is 9 days. Because Mother was in good physical condition before the stroke, except for the cancer which we believe now has returned, it could take longer than three weeks.
Meanwhile, I am working hard this morning on getting the powers-that-be to allow Mother to stay at the facility rather than bring her home. Her insurance company/Family Hospice Care claims that she has to come home after a five-day stay because they have no long-term hospice facility(ies) contracted. But I have discovered that there are such services available here. Odyssey Hospice, which has its own wing attached to Manor Care, has a long-term hospice facility where patients may remain until they pass. To do this, it may be that we have to change Mother's hospice provider. If so, I will make sure it gets done.
I have talked with many of Anita & John's friends and we all agree, as John does as well, that it is a bad idea to bring her home. First, she has herself indicated disinterest in returning home. Second, it is a major disruption and would be devastating and a horror for John. It would turn memories of Anita into a nightmare everytime he walked into her "room." He should not be faced with this.
We have a four-day window to get this done. I will keep you informed.
Melissa
Well the move happened. They came at 12:30 ysterday to pick Anita up from Premier Heatlhcare and move her to Manor Care which is located in Palm Desert much, much closer to her house. As Mother was leaving Premier, Fritzie was arriving for a visit and helped me remove Mother's things from her room there. Thank you Fritzie!
Manor Care Health Services is located at 74-350 Country Club Drive between Portola and Cook Streets on the north side of the street. Mother has a private room. The phone number for Manor Care is (760) 341-0261. This is a much nicer facility than Premier. Her room is homey with furniture that one might find in a house - e.g. wing chairs, a wood entertainment center, wood nightstand, and wood round table. She looks out on a tree and grass. I have met the resident doctor there and he is a wonderfully sensitive and caring person. So Anita is in very good hands at the moment.
She is definitely in hospice care now which means no food or hydration but she will be provided with oxygen (if and when needed) and pain medications as needed. It is important to watch her for indications of pain. So if any of you happen to be visiting her and notice her grimacing, or groaning, or showing signs of discomfort, please report your observations to the nurse on duty. The doctor stated that they have physical indicators they look for with patients, particularly those who can not speak for themselves, which allows the staff to assess her pain level and to decide the type and amount of pain medication to administer.
As for her condition as of yesterday, the doctor stated that she is partly there and partly not. The part that is not there will never return. She is quiet, her color is still good, she casts sweet looks at those about her. I asked the doctor how long she has left. He stated that every individual differs, but that in general from the date a person stops eating it is approximately three weeks. She has already gone without food since March 5 which is 9 days. Because Mother was in good physical condition before the stroke, except for the cancer which we believe now has returned, it could take longer than three weeks.
Meanwhile, I am working hard this morning on getting the powers-that-be to allow Mother to stay at the facility rather than bring her home. Her insurance company/Family Hospice Care claims that she has to come home after a five-day stay because they have no long-term hospice facility(ies) contracted. But I have discovered that there are such services available here. Odyssey Hospice, which has its own wing attached to Manor Care, has a long-term hospice facility where patients may remain until they pass. To do this, it may be that we have to change Mother's hospice provider. If so, I will make sure it gets done.
I have talked with many of Anita & John's friends and we all agree, as John does as well, that it is a bad idea to bring her home. First, she has herself indicated disinterest in returning home. Second, it is a major disruption and would be devastating and a horror for John. It would turn memories of Anita into a nightmare everytime he walked into her "room." He should not be faced with this.
We have a four-day window to get this done. I will keep you informed.
Melissa
Tuesday 13 March 2012
Post #8: The Bureaucratic Run-Around
Dear everyone,
What a nightmare yesterday was - caught up in the bureaucratic shuffleboard between rehab care and hospice. They wanted to toss Mother out of Premier Healthcare yesterday - without giving us the mandatory 48 hour notice. The reason is that since Anita is not eating and is not participating in therapy, her insurance company will no longer pay for her being there as a rehab patient. But they are supposed to give you a 48-hour "eviction" notice first. Then John made the decision to put her into hospice care. So they got the conversion-to-hospice process going only to run into snafus.
First they said that Anita could stay at the same facility she's currently at (Premier Healthcare) for 5 days under the respite stay provisions of hospice care after which she would be brought home. That would give John and me time to get the house ready. So yesterday John went back home around 3:30pm or so and I stayed on with Mom. About 6pm I get a call from the hospice gal (from Family Hospice Care) saying there has been a mix-up. Mom's insurance company contracts with the Premier Healthcare facility for a set number of hospice beds and they are full to capacity! So Mom has to move to another facility that evening!!!!!
Luckily the hospice gal thought of an alternate plan: technically don't put Mom officially into hospice status, keep her in her current status, and wait for the facility to issue a new 48-hour eviction notice. So that maneuver bought us at least a couple days lead time to find her another good facility and hopefully one closer to John's house.
What a bunch of bull, not to mention emotional ping-pong. This morning John and I have been on the phone talking with not only Family Hospice Care but also another hospice group called Odyssey Hospice which has a facility in Palm Desert. So now I am waiting to hear back from the Family Hospice admissions director as to whether they have secured Mom a spot in our facility of choice, which is Manor Care here in Palm Desert. As it happens, Odyssey Hospice has it's own separate wing in back of the Manor Care facility. So . . . if Family Hospice screws this one up, we will switch to Odyssey. But what a pain in the backside.
As for Mama, she is still refusing to eat and is sipping minimal amounts of water. Her eyes are getting more sunken and her face more gaunt inasumch as she hasn't eaten since March 5th. She is still aware and responds to questions, but she is gradually getting more listless. Yesterday I brushed her hair with a dry shampoo (as I do everyday), gave her a manicure, dabbed on some perfume and rubbed on some hand & body lotion. The TV was off when I got there. I asked her if she wanted to watch some more and she indicated she wasn't interested. I tried to get her to respond again by pointing to the "yes" and "no" magnetic letters, specifically to the question of "Do you want to go home? She seemed to indicate "yes" but later when I asked her had I understood her correctly, she seemed to indicate "no." So it is still impossible to determine what she is really thinking.
News Flash: Just got a phone call from the Family Hospice people. They have found a spot for her at Manor Care here in Palm Desert and will be moving her there this afernoon, probably around 1pm or 2pm. I will keep you posted on the move.
Melissa
What a nightmare yesterday was - caught up in the bureaucratic shuffleboard between rehab care and hospice. They wanted to toss Mother out of Premier Healthcare yesterday - without giving us the mandatory 48 hour notice. The reason is that since Anita is not eating and is not participating in therapy, her insurance company will no longer pay for her being there as a rehab patient. But they are supposed to give you a 48-hour "eviction" notice first. Then John made the decision to put her into hospice care. So they got the conversion-to-hospice process going only to run into snafus.
First they said that Anita could stay at the same facility she's currently at (Premier Healthcare) for 5 days under the respite stay provisions of hospice care after which she would be brought home. That would give John and me time to get the house ready. So yesterday John went back home around 3:30pm or so and I stayed on with Mom. About 6pm I get a call from the hospice gal (from Family Hospice Care) saying there has been a mix-up. Mom's insurance company contracts with the Premier Healthcare facility for a set number of hospice beds and they are full to capacity! So Mom has to move to another facility that evening!!!!!
Luckily the hospice gal thought of an alternate plan: technically don't put Mom officially into hospice status, keep her in her current status, and wait for the facility to issue a new 48-hour eviction notice. So that maneuver bought us at least a couple days lead time to find her another good facility and hopefully one closer to John's house.
What a bunch of bull, not to mention emotional ping-pong. This morning John and I have been on the phone talking with not only Family Hospice Care but also another hospice group called Odyssey Hospice which has a facility in Palm Desert. So now I am waiting to hear back from the Family Hospice admissions director as to whether they have secured Mom a spot in our facility of choice, which is Manor Care here in Palm Desert. As it happens, Odyssey Hospice has it's own separate wing in back of the Manor Care facility. So . . . if Family Hospice screws this one up, we will switch to Odyssey. But what a pain in the backside.
As for Mama, she is still refusing to eat and is sipping minimal amounts of water. Her eyes are getting more sunken and her face more gaunt inasumch as she hasn't eaten since March 5th. She is still aware and responds to questions, but she is gradually getting more listless. Yesterday I brushed her hair with a dry shampoo (as I do everyday), gave her a manicure, dabbed on some perfume and rubbed on some hand & body lotion. The TV was off when I got there. I asked her if she wanted to watch some more and she indicated she wasn't interested. I tried to get her to respond again by pointing to the "yes" and "no" magnetic letters, specifically to the question of "Do you want to go home? She seemed to indicate "yes" but later when I asked her had I understood her correctly, she seemed to indicate "no." So it is still impossible to determine what she is really thinking.
News Flash: Just got a phone call from the Family Hospice people. They have found a spot for her at Manor Care here in Palm Desert and will be moving her there this afernoon, probably around 1pm or 2pm. I will keep you posted on the move.
Melissa
Monday 12 March 2012
Post #7: Still not eating
Dear all,
Just composed this post and then accidentally deleted it. There is no "undo" button on this site. So here I go again.
Spent yesterday afternoon with Mama. She had a bite or two of oatmeal in the morning but otherwise ate nothing else. I offered her some creamy, soft avocado but she refused. She is still taking sips of water.
On Sundays a new physical therapy guy comes in. This one had a wonderful, gentle approach and was able to do some therapy with Mother in her room. This was heartening, although her cooperation may have been due to the fact that John and I were there watching her. Anyhow, he raised and lowered and stretched her right arm and leg and asked her to resist his efforts. This was so he could tell whether she has any muscular activity or not. I believe Mother tried, but the therapist could not feel any movement. He did notice a slight movement in her shoulder, but said that that was probably just a reflex (for example your shoulder moves a bit when you cough). Her right arm and leg are flacid.
He then sat her up on the edge of the bed with her feet on the floor. He said this is good exercise for her core. The musculature of the core deteriorates with lying down in bed for an extensive period of time. One of the problems with sitting up after lying down for a long time is that the blood from the head rushes to the feet and the person can get dizzy. Mama did get dizzy but what is wonderful is that she was able to communicate to us that she was dizzy and wanted to lie down again. She did this by pointing to magnetic letters that I had arranged. I don't know if Mother can actually read or not, but I arranged the words "YES" and "NO" on the magnetic board and told Mom that the group of letters on the left meant "yes" and the group on the right meant "no." When asked if she felt dizzy, she put her hand on the "yes" group. When asked if she wanted to lie down, she did it again.
My goal now is hopefully to get her to respond to more yes/no questions. Sort of like "20 Questions." If we can narrow down the questions, she may be able to express herself more specifically on subjects.
She has now not been eating much of anyting for about a week. This is most troubling. Today (Monday) may prove to be crucial in determining Anita's direction in that the regular speech and other therapists return. Whether she continues her cooperation is the question. We shall see.
Melissa
Just composed this post and then accidentally deleted it. There is no "undo" button on this site. So here I go again.
Spent yesterday afternoon with Mama. She had a bite or two of oatmeal in the morning but otherwise ate nothing else. I offered her some creamy, soft avocado but she refused. She is still taking sips of water.
On Sundays a new physical therapy guy comes in. This one had a wonderful, gentle approach and was able to do some therapy with Mother in her room. This was heartening, although her cooperation may have been due to the fact that John and I were there watching her. Anyhow, he raised and lowered and stretched her right arm and leg and asked her to resist his efforts. This was so he could tell whether she has any muscular activity or not. I believe Mother tried, but the therapist could not feel any movement. He did notice a slight movement in her shoulder, but said that that was probably just a reflex (for example your shoulder moves a bit when you cough). Her right arm and leg are flacid.
He then sat her up on the edge of the bed with her feet on the floor. He said this is good exercise for her core. The musculature of the core deteriorates with lying down in bed for an extensive period of time. One of the problems with sitting up after lying down for a long time is that the blood from the head rushes to the feet and the person can get dizzy. Mama did get dizzy but what is wonderful is that she was able to communicate to us that she was dizzy and wanted to lie down again. She did this by pointing to magnetic letters that I had arranged. I don't know if Mother can actually read or not, but I arranged the words "YES" and "NO" on the magnetic board and told Mom that the group of letters on the left meant "yes" and the group on the right meant "no." When asked if she felt dizzy, she put her hand on the "yes" group. When asked if she wanted to lie down, she did it again.
My goal now is hopefully to get her to respond to more yes/no questions. Sort of like "20 Questions." If we can narrow down the questions, she may be able to express herself more specifically on subjects.
She has now not been eating much of anyting for about a week. This is most troubling. Today (Monday) may prove to be crucial in determining Anita's direction in that the regular speech and other therapists return. Whether she continues her cooperation is the question. We shall see.
Melissa
Sunday 11 March 2012
Post #6: Still No Decisive Direction But . . .
Dear Everyone,
Yesterday Anita actually ate a bit of peach cobbler, but that was it. Certainly not enough to provide any kind of sustaining nutrition. She continues to ocassionally sip water, but again, not enough for sufficient hydration.
More friends came to visit her yesterday, bearing flowers and a card which I read to her. Although it was difficult to tell for certain, she seemed pleased to have visitors. And thank you to all who have come to see her. I know it is difficult in that she can not respond, but the visits reinforce the fact that she is much loved, that lots of people are very concerned about her and interested in supporting her in recovery efforts.
I brought her some photographs to look at. She had had them push-pinned on corkboard or in frames in her office at home. She set about rearranging the photos on the corkboard in what I can only describe as an attempt to organize them into a more attractive arrangement. That certainly is a touch of the Anita we know. Since the corkboard was falling apart, I went out and got her a large foam board on which all of the photos are now pinned. I then set it up in a chair so that she can view it. Today (Sunday) I'll see if she wants to rearrange the photos again.
She is watching the television screen but does not like to listen to the audio. I have been informed that this may be due to the fact that multiple voices on the TV only confuse her - her brain can't process the multiple and fast-paced words.
My overall impression yesterday was that she is somewhat more listless than before - not surprising given the lack of nutrition - and still depressed. We tried one last time with overt encouragement to not make such a serious decision when her brain still has inflammation, when she is not properly nourished, and consequently, when she is not in the best condition to be making vital decisions. I can only hope that she is considering that.
So it is still a waiting game for us as the decision is still up to her.
Melissa
Yesterday Anita actually ate a bit of peach cobbler, but that was it. Certainly not enough to provide any kind of sustaining nutrition. She continues to ocassionally sip water, but again, not enough for sufficient hydration.
More friends came to visit her yesterday, bearing flowers and a card which I read to her. Although it was difficult to tell for certain, she seemed pleased to have visitors. And thank you to all who have come to see her. I know it is difficult in that she can not respond, but the visits reinforce the fact that she is much loved, that lots of people are very concerned about her and interested in supporting her in recovery efforts.
I brought her some photographs to look at. She had had them push-pinned on corkboard or in frames in her office at home. She set about rearranging the photos on the corkboard in what I can only describe as an attempt to organize them into a more attractive arrangement. That certainly is a touch of the Anita we know. Since the corkboard was falling apart, I went out and got her a large foam board on which all of the photos are now pinned. I then set it up in a chair so that she can view it. Today (Sunday) I'll see if she wants to rearrange the photos again.
She is watching the television screen but does not like to listen to the audio. I have been informed that this may be due to the fact that multiple voices on the TV only confuse her - her brain can't process the multiple and fast-paced words.
My overall impression yesterday was that she is somewhat more listless than before - not surprising given the lack of nutrition - and still depressed. We tried one last time with overt encouragement to not make such a serious decision when her brain still has inflammation, when she is not properly nourished, and consequently, when she is not in the best condition to be making vital decisions. I can only hope that she is considering that.
So it is still a waiting game for us as the decision is still up to her.
Melissa
Friday 9 March 2012
Post #5: Fork in the Road
Dear all,
After today it will quickly become apparent which way Anita is headed. She is refusing all food and only occasionallly sipping water. She continues to resist participating in physical or speech therapy. Premier Healthcare informed her today that if she continues to refuse to eat, then as of Monday they will have to re-evaluate her presence at the facility. In short, she will be required to leave. If she leaves she will go to hospice.
We made a last ditch effort to encourage her to go the other direction: to decide that her life is still worth living, to eat to nourish herself and to participate in physical and speech therapies. In terms of recovery potential, now is the crucial time period to be working hard in those therapies. She has been given a lot to think about. We shall see, in due time, where that leads her.
So the ball is in her court at the moment. We have to wait and see what she does with it.
Melissa
After today it will quickly become apparent which way Anita is headed. She is refusing all food and only occasionallly sipping water. She continues to resist participating in physical or speech therapy. Premier Healthcare informed her today that if she continues to refuse to eat, then as of Monday they will have to re-evaluate her presence at the facility. In short, she will be required to leave. If she leaves she will go to hospice.
We made a last ditch effort to encourage her to go the other direction: to decide that her life is still worth living, to eat to nourish herself and to participate in physical and speech therapies. In terms of recovery potential, now is the crucial time period to be working hard in those therapies. She has been given a lot to think about. We shall see, in due time, where that leads her.
So the ball is in her court at the moment. We have to wait and see what she does with it.
Melissa
Post #4: A Pivotal Time
Good morning everyone,
Sorry for the delay in posting yesterday's update, but I did not have time and was too tired to do so last night.
An interesting day yesterday. Mother had lots of wonderful visitors during the day whom, of those visits I observed, she was clearly very pleased to see and those visits appeared to be stimulating to Mom. Thank you all for making the effort to come see her. It helps her keep her focus more outward. Kelley continues to come daily with his darling lapdogs and Mother really responds well to them.
Her skin color is good, her eyes are in general bright and focused. She can partially use her left hand to adjust her covers, hold kleenex, pick up her water cup and other objects. She tried yesterday to raise her water cup and straw herself to her mouth. She missed her mouth with the straw, but she was making the effort. More encouragingly, she tried to mouth (no sound) some words. We definitely saw her mouth the word "no" and "wah" for water and also mouth a word beginning with the letter "b" - we couldn't catch it but it could have been "bathroom" or "Bernadette" (who was visiting with her at the time). She is laughing at jokes and ironies, she appears to listen and comprehend conversations going on around her. She smiles, tears up from time to time, and looks lovingly at people around her. She likes to hold and squeeze your hand with her left hand and her grip is surprisingly strong.
Her speech therapist (a wonderful guy named David) showed us an amazing thing Mom did a day or so ago. He had drawn a circle on a blank piece of paper with a red marking pen. It took a while but Mama, with her left hand, drew in eyes, a nose and a mouth making a smiley face. The most wonderful part of this besides her being able to draw is that it means that she has visual acuity out of both eyes. David told me that most stroke patients would have "drawn" only half the face because they lose visual acuity out of one side. That is why most stroke patients tilt their heads to one side, because that is the side that has retained vision. So this is an excellent development with respect to Mom.
But, unfortunately, she is still refusing to eat. She will sip water, but has eaten nothing in the past couple of days. She also still refuses to participate in speech therapy and David told me that yesterday she resisted going to physical therapy by holding on to the bar-rails on her bed when they tried to stand her up. David suggested we try to tempt her with some of her favorite food items. My brother Ed and I brought her some food, but she refused to eat it. So we are now encouraging anyone who comes to visit her to bring something soft and tasty that you think she might try. Don't be discouraged if she turns you down, just take the food back. But we've got to provide her with the opportunity to eat. She does have the capability of letting you know she is saying "no." She moves her arm out with her palm raised as though to say "stop." Not to mention her facial expressions! Especially her eyebrows. That's how I know Mom is really there and still cognizant. You can see the ol' Anita personality blazing through. And that's actually a positive thing.
An upbeat note: I took pictures yesterday morning with my iPhone of Mom's garden. Fortunately the flowers are blooming, the ones that she has planted and worked so hard on. As you may know with iPhone photos, to view the next photo you just sweep your finger on the screen and the next picture rolls into view. So I was holding the iPhone up in front of Mother's face and rolling through the pictures of the garden when all of a sudden she raised her left hand and swiped the screen with her finger which rolled in the next picture! No one had asked her to do this! It was entirely her own action. Absolutely fabulous! However, I need to explain the signifigance of this.
Mother does not have voluntary control so much as she has involuntary control. For example, if you tell her to do something like "swipe the screen with your finger" she would not be able to do it. The connection between her neuronal control for physcial action pursuant to a conscious mental direction does not function at the moment. That part of her brain needs to rewire itself around the damaged areas. But if she gets an impulse that she hasn't thought about, the physical action happens, such as her suddenly just reaching up a finger to swipe the screen.
So the upshot is that she has definitely made improvements in the past 10 days, but she is very depressed and may be deliberately starving herself. All of us know that deep down Anita is a fighter and a survivor. She is a lover of life, a do-er, and take-action kind of person if ever there was one. If she decides to fight this, as my Aunt Harriet Delnero has said, look out world - she'll do it. And that's the nub -this is Anita's decision to make. She has to decide that she wants to live and wants to fight to live. No one can make this decision for her. We all certainly hope and pray that she will. But ultimately, it's up to her.
Melissa
Sorry for the delay in posting yesterday's update, but I did not have time and was too tired to do so last night.
An interesting day yesterday. Mother had lots of wonderful visitors during the day whom, of those visits I observed, she was clearly very pleased to see and those visits appeared to be stimulating to Mom. Thank you all for making the effort to come see her. It helps her keep her focus more outward. Kelley continues to come daily with his darling lapdogs and Mother really responds well to them.
Her skin color is good, her eyes are in general bright and focused. She can partially use her left hand to adjust her covers, hold kleenex, pick up her water cup and other objects. She tried yesterday to raise her water cup and straw herself to her mouth. She missed her mouth with the straw, but she was making the effort. More encouragingly, she tried to mouth (no sound) some words. We definitely saw her mouth the word "no" and "wah" for water and also mouth a word beginning with the letter "b" - we couldn't catch it but it could have been "bathroom" or "Bernadette" (who was visiting with her at the time). She is laughing at jokes and ironies, she appears to listen and comprehend conversations going on around her. She smiles, tears up from time to time, and looks lovingly at people around her. She likes to hold and squeeze your hand with her left hand and her grip is surprisingly strong.
Her speech therapist (a wonderful guy named David) showed us an amazing thing Mom did a day or so ago. He had drawn a circle on a blank piece of paper with a red marking pen. It took a while but Mama, with her left hand, drew in eyes, a nose and a mouth making a smiley face. The most wonderful part of this besides her being able to draw is that it means that she has visual acuity out of both eyes. David told me that most stroke patients would have "drawn" only half the face because they lose visual acuity out of one side. That is why most stroke patients tilt their heads to one side, because that is the side that has retained vision. So this is an excellent development with respect to Mom.
But, unfortunately, she is still refusing to eat. She will sip water, but has eaten nothing in the past couple of days. She also still refuses to participate in speech therapy and David told me that yesterday she resisted going to physical therapy by holding on to the bar-rails on her bed when they tried to stand her up. David suggested we try to tempt her with some of her favorite food items. My brother Ed and I brought her some food, but she refused to eat it. So we are now encouraging anyone who comes to visit her to bring something soft and tasty that you think she might try. Don't be discouraged if she turns you down, just take the food back. But we've got to provide her with the opportunity to eat. She does have the capability of letting you know she is saying "no." She moves her arm out with her palm raised as though to say "stop." Not to mention her facial expressions! Especially her eyebrows. That's how I know Mom is really there and still cognizant. You can see the ol' Anita personality blazing through. And that's actually a positive thing.
An upbeat note: I took pictures yesterday morning with my iPhone of Mom's garden. Fortunately the flowers are blooming, the ones that she has planted and worked so hard on. As you may know with iPhone photos, to view the next photo you just sweep your finger on the screen and the next picture rolls into view. So I was holding the iPhone up in front of Mother's face and rolling through the pictures of the garden when all of a sudden she raised her left hand and swiped the screen with her finger which rolled in the next picture! No one had asked her to do this! It was entirely her own action. Absolutely fabulous! However, I need to explain the signifigance of this.
Mother does not have voluntary control so much as she has involuntary control. For example, if you tell her to do something like "swipe the screen with your finger" she would not be able to do it. The connection between her neuronal control for physcial action pursuant to a conscious mental direction does not function at the moment. That part of her brain needs to rewire itself around the damaged areas. But if she gets an impulse that she hasn't thought about, the physical action happens, such as her suddenly just reaching up a finger to swipe the screen.
So the upshot is that she has definitely made improvements in the past 10 days, but she is very depressed and may be deliberately starving herself. All of us know that deep down Anita is a fighter and a survivor. She is a lover of life, a do-er, and take-action kind of person if ever there was one. If she decides to fight this, as my Aunt Harriet Delnero has said, look out world - she'll do it. And that's the nub -this is Anita's decision to make. She has to decide that she wants to live and wants to fight to live. No one can make this decision for her. We all certainly hope and pray that she will. But ultimately, it's up to her.
Melissa
Wednesday 7 March 2012
Post #3: A Long Road Ahead
Dear Everyone,
The better news is that today Anita was moved from Room 10A to Room 9A at Premier Healthcare. This is a beneficial change as her former roommate, Rita, although a nice enough person was also a very talkative and rather nosiy one. Anita's new roommate is an older woman who appears to be very quiet. Addtionally this roommate keeps the window blinds open which allows Mother to look out at green trees and the outside.
However, today was also discouraging. I was informed by her speech therapist that Mother is not only refusing to engage in speech therapy but worse, she is refusing to eat. Refusal to eat is a typical symptom of depression. The depression was expected but that's hardly a consolation. Of course, we all are constantly encouraging her to eat and to do her physical, occupational and speech therapy, but ultimately the decision to fight her way back is hers. As a consequence, John did not have a good day today and really needs all the support possible.
The "upside" is that it is still early on. It has been barely a week since the stroke and the professionals at Premier are saying that it can take from two to three weeks before the patient's "self-direction" can be determined. So we must wait and see.
A plus for Anita today was that my brother Ed arrived and spent the bulk of the day with her. I observed them together and Mom was responding and clearly (to me and to Ed) comprehending what was being said and was happy that he was here. This is a positive sign.
So a mixed bag kind of day. Hopefully I can report more positive news tomorrow.
Melissa
.
The better news is that today Anita was moved from Room 10A to Room 9A at Premier Healthcare. This is a beneficial change as her former roommate, Rita, although a nice enough person was also a very talkative and rather nosiy one. Anita's new roommate is an older woman who appears to be very quiet. Addtionally this roommate keeps the window blinds open which allows Mother to look out at green trees and the outside.
However, today was also discouraging. I was informed by her speech therapist that Mother is not only refusing to engage in speech therapy but worse, she is refusing to eat. Refusal to eat is a typical symptom of depression. The depression was expected but that's hardly a consolation. Of course, we all are constantly encouraging her to eat and to do her physical, occupational and speech therapy, but ultimately the decision to fight her way back is hers. As a consequence, John did not have a good day today and really needs all the support possible.
The "upside" is that it is still early on. It has been barely a week since the stroke and the professionals at Premier are saying that it can take from two to three weeks before the patient's "self-direction" can be determined. So we must wait and see.
A plus for Anita today was that my brother Ed arrived and spent the bulk of the day with her. I observed them together and Mom was responding and clearly (to me and to Ed) comprehending what was being said and was happy that he was here. This is a positive sign.
So a mixed bag kind of day. Hopefully I can report more positive news tomorrow.
Melissa
.
Tuesday 6 March 2012
Post #2: A New Dynamic
Hello to everyone,
Yesterday afternoon Anita was moved from the Eisenhower hospital to a rehabilitation facility in Palm Springs. She is at Premier Healthcare, 2990 East Ramon Road, Palm Springs, CA in Room #10A. She has already undergone her first round of intensive physical therapy and which will be accompanied with speech therapy. Today they actually had her stand up - with assistance of course. She still can not speak and her right arm is limp and non-functioning. But her eyes are alert, she is able to swallow and consequently able to eat soft foods and liquids, she turns her head from side to side, organizes things on her traystand with her left hand, and most importantly, is reacting to people who talk to her. It is a long, long road ahead. Her projected stay at this facility is at least three months. It will be six weeks before they know if her right arm regains function.
Technically Mother suffered a hemorraghic stroke (excuse my spelling please), a left mid-cerebral artery stroke caused by a blood clot from her heart due to afibrillation. She has had bleeding into the corpus colossum and the right side of her brain. Apparently there is a better rate of recovery from hemorraghic strokes than from other types of strokes..
Sorry but I'm falling asleep as I type so more details tomorrow.
Thanks to all,
Melissa
Yesterday afternoon Anita was moved from the Eisenhower hospital to a rehabilitation facility in Palm Springs. She is at Premier Healthcare, 2990 East Ramon Road, Palm Springs, CA in Room #10A. She has already undergone her first round of intensive physical therapy and which will be accompanied with speech therapy. Today they actually had her stand up - with assistance of course. She still can not speak and her right arm is limp and non-functioning. But her eyes are alert, she is able to swallow and consequently able to eat soft foods and liquids, she turns her head from side to side, organizes things on her traystand with her left hand, and most importantly, is reacting to people who talk to her. It is a long, long road ahead. Her projected stay at this facility is at least three months. It will be six weeks before they know if her right arm regains function.
Technically Mother suffered a hemorraghic stroke (excuse my spelling please), a left mid-cerebral artery stroke caused by a blood clot from her heart due to afibrillation. She has had bleeding into the corpus colossum and the right side of her brain. Apparently there is a better rate of recovery from hemorraghic strokes than from other types of strokes..
Sorry but I'm falling asleep as I type so more details tomorrow.
Thanks to all,
Melissa
Monday 5 March 2012
Post #1: Another journey has begun
Dear All,
Please pardon the lateness of this posting. It has been a long day, jet lag is still there, and what has been happening, as you can imagine, is very challenging. I arrived in Palm Desert yesterday in the late afternoon. John picked me up at the airport and before heading to the house we stopped off at the Eisenhower Medical Center to see Mama. I saw her again today in the late afternoon before they moved her to a rehabiliation facility. John and I are heading over there tomorrow to see her and to assess what can be done to make her environ a bit more home-like and familiar looking.
As Kelley has so faithfully and dilgently reported, she passed the "swallow test" and has avoided having to have a stomach feeding tube inserted. Because of this she has now been able to be transferred to the rehab facility. This is vital as her continued improvement depends on a steady regimen of physical and speech therapy and other exercises and programs developed for persons who have suffered strokes. Her right side is still immobile, however she has a very strong grip with her left hand, was turning her head from side to side in response to the conversation around her - John on one side and me on the other - and was trying to adjust her sheet and blanket. Her expressions are in her face - the raised eyebrows, the curved-in-laughter side of her mouth, the tears that drop from her eyes from time to time. Her eyes vary between sharp and focused to misty and withdrawn. Although she can't speak, she does make slight cough-like sounds and moves her mouth in what appears to be attempts to speak. She responds to questions and comments, but some of her responses are difficult to interpret. It is still not possible to grasp exactly what she comprehends and what she doesn't.
It's a matter of time and day-to-day and step-by-step progrees. But the most heartwarming and encouraging note today came from the other woman patient in Mom's room . Her name is Rosalie and she looks roughly near the same age as Mom. While John and I were sitting and talking to Mom, the dividing-curtain between the two beds was suddenly pinched and drawn towards Rosalie's bed and she called out something. I went around to see if there was a problem and was astounded when, instead of a problem, Rosalie said (and I'm paraphrasing) "Your mother is a very lucky woman to be so very loved. Everybody loves her. A woman with that much love will survive and recover." Then Rosalie's own daughter arrived and was just as loving and gracious as her mother. I take this all as a most favorable omen!
John has been through emotional and physical hell. A more dedicated, loving presence at Mama's bedside I cannot imagine. He has sat with her daily, all day long giving her the most loving and upbeat-as-possible encouragement. Now that she is at the rehab facility a routine will develop that will aid John significantly and enable him to tend to himself, to take care of things at home and participate in activities that will help alleviate his stress.
So, more news tomorrow after we have visited the new facility and and watch the beginning of what I am certain in my heart will be continued improvement by Mom.
Good night and thanks to everyone for their continued love and support.
Melissa
Please pardon the lateness of this posting. It has been a long day, jet lag is still there, and what has been happening, as you can imagine, is very challenging. I arrived in Palm Desert yesterday in the late afternoon. John picked me up at the airport and before heading to the house we stopped off at the Eisenhower Medical Center to see Mama. I saw her again today in the late afternoon before they moved her to a rehabiliation facility. John and I are heading over there tomorrow to see her and to assess what can be done to make her environ a bit more home-like and familiar looking.
As Kelley has so faithfully and dilgently reported, she passed the "swallow test" and has avoided having to have a stomach feeding tube inserted. Because of this she has now been able to be transferred to the rehab facility. This is vital as her continued improvement depends on a steady regimen of physical and speech therapy and other exercises and programs developed for persons who have suffered strokes. Her right side is still immobile, however she has a very strong grip with her left hand, was turning her head from side to side in response to the conversation around her - John on one side and me on the other - and was trying to adjust her sheet and blanket. Her expressions are in her face - the raised eyebrows, the curved-in-laughter side of her mouth, the tears that drop from her eyes from time to time. Her eyes vary between sharp and focused to misty and withdrawn. Although she can't speak, she does make slight cough-like sounds and moves her mouth in what appears to be attempts to speak. She responds to questions and comments, but some of her responses are difficult to interpret. It is still not possible to grasp exactly what she comprehends and what she doesn't.
It's a matter of time and day-to-day and step-by-step progrees. But the most heartwarming and encouraging note today came from the other woman patient in Mom's room . Her name is Rosalie and she looks roughly near the same age as Mom. While John and I were sitting and talking to Mom, the dividing-curtain between the two beds was suddenly pinched and drawn towards Rosalie's bed and she called out something. I went around to see if there was a problem and was astounded when, instead of a problem, Rosalie said (and I'm paraphrasing) "Your mother is a very lucky woman to be so very loved. Everybody loves her. A woman with that much love will survive and recover." Then Rosalie's own daughter arrived and was just as loving and gracious as her mother. I take this all as a most favorable omen!
John has been through emotional and physical hell. A more dedicated, loving presence at Mama's bedside I cannot imagine. He has sat with her daily, all day long giving her the most loving and upbeat-as-possible encouragement. Now that she is at the rehab facility a routine will develop that will aid John significantly and enable him to tend to himself, to take care of things at home and participate in activities that will help alleviate his stress.
So, more news tomorrow after we have visited the new facility and and watch the beginning of what I am certain in my heart will be continued improvement by Mom.
Good night and thanks to everyone for their continued love and support.
Melissa
Friday 2 March 2012
Well, I fibbed
Hello everyone,
Well I apparently fibbed about not doing another post before leaving for Palm Desert. But because Kelley Judd has been being so diligent sending out updates, I wanted to pass along to all of you his two latest from March 2nd.
UPDATE #1:
Well I apparently fibbed about not doing another post before leaving for Palm Desert. But because Kelley Judd has been being so diligent sending out updates, I wanted to pass along to all of you his two latest from March 2nd.
UPDATE #1:
I went to visit Anita this afternoon, John & Marcia were there. She is out of ICU and in Room 3023A. That is in the new Annenberg Wing. Anita recognized me and she gave me a smile. She cannot talk right now, but she squeezed my hand to let me know she knew who I was.
There still is not much information from the doctors. The nurses did start physical therapy, they had her sit up, stretch her leg out, she brushed her hair a couple of strokes, they got her to open her mouth and take a spoonful of broth, which she managed to swallow, and she opened her mouth so they could take her temperature. John sits on her right side so that she has to move her head to the right to see him. I told her that if looking at him doesn’t kill her, than nothing will. That made her laugh.
When I left, I told her I was taking Tristan to the dog park with my dogs, and she acknowledged that. I believe she is comprehending things and that is encouraging.
John is a trooper. He brought Marcia over this morning and he let her have some time with her mother and then came back after lunch and will spend the rest of the day there, along with Marcia. He has his crossword puzzles and some books. He knows it is going to be a long, slow ordeal, but you now John, he will make the best of the situation.
Best, Kelley
UPDATE #2:
I spoke with John this evening and he finally saw the neurosurgeon. The doctor wants to get Anita into Physical Therapy ASAP. There are two possibilities, one at Eisenhower and another off campus, not sure of name and location. The doctor wants her to get 3 ½ hours of PT daily, starting right now.
Since I had given you her room number earlier, I want you to be aware she could be moved as early as tomorrow, Saturday, March 3.
John is hanging in there but his stress level has been elevated. All of your support is very much appreciated.
Please call to before you visit to make sure of Anita’s location.
Be well,
Kelley
My (Melissa's) best to all of you and will update again when I get to Palm Desert.
Optimistically,
Melissa
Thursday 1 March 2012
Dear every relative, friend and admirer of Anita Kornfeld,
My last post on this site was on December 14, 2007 following Mama's successful fight against a horrendous cancer. Unfortunately, and with great sadness, I am reviving this blogsite. As you know, Anita has suffered a stroke this week. With many, many thanks to Anita and John's fantastic neighbor and friend, Kelley Judd, the following is the latest update on her condition, as of today, Thursday, March 1, 2012:
From: Kelley Judd
Sent: Wednesday, February 29, 2012 5:07 PM
My last post on this site was on December 14, 2007 following Mama's successful fight against a horrendous cancer. Unfortunately, and with great sadness, I am reviving this blogsite. As you know, Anita has suffered a stroke this week. With many, many thanks to Anita and John's fantastic neighbor and friend, Kelley Judd, the following is the latest update on her condition, as of today, Thursday, March 1, 2012:
From: Kelley Judd
Sent: Wednesday, February 29, 2012 5:07 PM
Subject: Anita update
I dropped by the hospital and saw Anita and John.
She was much improved. I held her hand and she recognized me and gave my hand a squeeze. Her right side was damaged so she can’t smile ear to ear, but her eyes were bright, her skin had color and she was in good spirits. I told a joke and she chuckled. John told me the nurses said if she continues to improve, she could be moved out of ICU in a day or two. Yesterday, after they administered the anti-coagulant, there was some “leaking of blood into the brain.” The doctors were considering operating but have decided they don’t need to do that now.
The doctors really do not know much right now. It will take time to straighten it out and to see how much damage was done. After things are sorted out, the appropriate course can be determined. Until then, we just have to be patient.
Marcia is coming in from SF tomorrow afternoon, John will pick her up at PS Airport. I offered but he insisted. I believe it will be good for him to take a break from the hospital room. Marcia will be here two days. Melissa is coming in from Spain on Sunday, she will stay a while.
John seems to be OK, he is being very positive. He has some spaghetti at home so he doesn’t need food just yet. I will keep all apprised so we can rotate taking casseroles and what not over for him when he needs it. I am helping to take care of Tristan. He gets along very well with my dogs so that is good.
I have passed along everyone’s thoughts and wishes, they both appreciated hearing that.
Kelley Judd
I will be arriving in Palm Desert this coming Sunday March 4th. I will try to update this blogsite daily, although I can't commit to a specific time of day nor that it will happen every day, but I will do my best. By all means, please feel free to leave your messages and thoughts as a comment and I will convey these to Mother.
Thank you to everyone for your continuing concern and support,
Melissa
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