Waving  FamilyCOMA PATIENT HELP

 

RoseIN LOVING MEMORY OF MY MOTHER JENETT SPECTOR MAY 18, 1932 - JUNE 20, 2000

My Mom Jenett Spector
CopyrightSusan Spector-Miano

THIS COMA HELP PAGE IS DEDICATED TO MY MOM JENETT SPECTOR WHO PASSED AWAY.SHE LEFT A LEGACY THAT WILL HELP FAMILIES AND COMA PATIENTS WITH HOPE AND INSPIRATION BY MY WRITING ABOUT MY MOM'S COMA EXPERIENCES. I AM LEARNING NOW BY EDUCATING MYSELF AND GOING FOR TRAINING TO KEEP THIS COMA HELP PAGE UP DATED.

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Dove

I would like to also add a Special Dedication to my Aunt Judith Garland (1935-2004), who was a big help to me with the Coma Help Page and also helping my mom who was her sister. My aunt Judith, who was very ill, passed away suddenly from a heart attack. She wasn't just my aunt, she was also my friend. She will be missed. Please pray for her.

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New Update For My Mom's Tribute And More Coma Update Information From (8-27-2000) On Please Click Here

Important!
New Update
One thing we all seem to forget is that the Coma Patient hears everything that is being said around them, and about them too. We have to including the Coma Patients in our conversation. If we do not tell the Coma Patients that we are aware that they can hear us, it can be very upsetting to them. The Coma Patient feels frustrated and very alone as is and we need to reassure them that we know they hear us. Best thing you can do is talk to the Coma Patient and if possible do not let any negativity be said around the Coma Patient. They will hear this and it could upset them or even discouraged the Coma Patients too. Talk to them about their condition and how you want to help them. Read to the Coma Patient, tell them about your day , talk to them about their friends and talk about what you know that would interest the Coma Patient too.

 

PLEASE RELOAD THIS PAGE FOR NEW INFORMATION.

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On December 18, 1997 my mother went into a coma. My mom choked on some food and became unconscious. The EMS were reviving her when she went into cardiac arrest. They revived her again and she was put in the hospital in the Intensive Care Unit. While in ICU she had the tracheotomy (tube in her neck for breathing) and she also had a procedure called PEG where they put a tube in her stomach to feed her. My mother stayed in ICU unit for about three weeks.

My mom was moved to a medical floor. I was told by her Doctors that she is not brain dead, and that she has brain waves. They said at the time my mother's prognosis is not good, in fact very poor. When this first happened I did not know any thing about comas.

I decided to look on the Internet to find coma help. I am very thankful that I did! I found the following site:
NACD ARTICLES - COMA where I read an article that gave me real hope.

From that article I learned that stimulation is very important to the coma patient recovery. I started doing certain stimulation procedures to my mother. I would I do smell stimulation with her and she seems to react to it. She also reacts to certain music tapes moving her head and at times her mouth. They cleaned out the breathing tube in her neck and again she start moving about, not liking it and she cried a little too. I was able to calm her down to a point where she fell into a restful sleep. At times she yawns her head off!:-) I played a tape of me speaking to her I think I was boring her!:-)

 

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Moving  DoctorNow back to my mother's Doctors, and Doctors in general. From what I have read and seen for myself, it is important to know all the medical facts and treatment the coma patient is getting and will be receiving. My mother was in a Hospital where they do not have a Brain Trauma Unit. It is very important to get the coma patient into a program where they do stimulation procedures. In my mom's case, when nobody is visiting her, all the Hospital does is medical procedures. This means that most of the time my mom was laying there in the bed comatose with no brain stimulation. I found out through the Internet that there are a lot of Hospitals and Nursing Homes that have Brain Trauma Units or Programs that treat and rehabilitate the coma patient. Anyone who has or knows a person who is in a coma, should be aware that the family has right to know what is going on with the patient and the care they are receiving. Question the Doctors and Nursing Staff on the patient's status. It is vital to know and stay on top of things to make sure everything is being done to help along the coma patient's recovery. It is also very important to keep in touch with the Social Worker or Case Worker at the Hospital where the coma patient is. Most important! If there is no Brain Recovery Program at the place where the coma patient is, move them into a place that has Brain Trauma Recovery Programs!

Brain Head ImageNever Give Up Hope!

I got a call from my mother's Doctor while she was in the Hospital telling me her blood pressure was dropping and she would most likely not make it through the night. He also told me her EEG test was not good, (this test was taken in the ICU unit) that it showed few brain waves and they were diminishing. The Doctor told me she would not wake up, but if she did she would be a vegetable. When we got there, her blood pressure had returned to normal limits. They gave her some type of medicine that brought it back up. They also gave her a blood transfusion because she had a low blood count. From the way the Doctor had talked to me on the phone, I thought that my mother was dying! It turned out that she had only contracted a urinary infection!!! The Doctor than said that her vitals signs are good, with no fever. He told me that he still believed "IF" she woke up she would be a vegetable for the rest of her life. I wrote to someone from NACD and he told me that the "EEG can change, and hopefully as her brain recovers from the trauma it will'. He confirmed what I believed about the EEG and I feel my mom still has a good chance!:-)

My mom was transferred into a Nursing Home on Feb 3rd, 1998. I was told that this Nursing Home has a Traumatic Brain Injury Program. My mom has been weaned off the ventilator and is breathing on her own now! She is receiving oxygen and was moved to the Traumatic Brain Injury Unit on 3-19-98.

On 3-27-98 my mom developed pneumonia and a bad urinary infection, so they sent her back to that Hospital that she first went into when she went into the coma. The Nursing Home knew my mom was sick since early that morning. They did not let me know that she was sick until later that night when my mom was on her way to the Emergency Room at that Hospital. I again got the worst medical case scenario from the Doctor at the Hospital that my mom would not make it through the night. The Doctor in the Emergency room is telling me she is real bad that she can die at any time! He then wants me to tell him that if her heart stops should they revive her? I told him YES they should revive her then it would be up to God not me to take her!!:-( He was arguing with me! I told this doctor under no circumstances should they just let her die! She is not on the respirator. If she has pneumonia wouldn't she have trouble breathing on her own? My mom did have a high fever and was coughing. They put her on antibiotics and Acetaminophen. But in no way did my mom look like she was on her death bed! This is the second time these doctors have done this to me!:-( I could see she was agitated but I was able to calm her down. My eyes looked right into my mothers eyes and there was recognition; she knew it was me!:-) I got her to the point where she became content and went to sleep!

I asked the doctor if my mom would be moved into Intensive Care Unit. He said no, she will be on a normal floor. DUH!!!! If she is in such bad shape why is she not being moved to ICU?? My mother did get better and went back into the Nursing Home on 4-2-98, bedsores and all. I was becoming very concerned about this Nursing home with good reason.

I found out that unless there is a Do-Not-Resusitate order in a patient's medical records, Doctors MUST revive the patient. A DNR order tells medical professionals not to perform CPR. I have made it clear that I want my mother to be revived and given Cardiopulmonary Resuscitation. CPR refers to the medical procedures used to restart a patient's heart and breathing when the patient suffers heart failure. It is very important to know what is in the medical records and to know what your rights are. Find out all facts concerning the care and treatment of the coma patients medical condition and medical affairs. Take the appropriate action that best suits you and the coma patient.

I wanted to become my mother's legal proxy. This way I would have total say over what's being done medically to my mom. My mother didn't get a chance to sign a form that requested me to be her proxy. Becoming her legal proxy was discussed but was put off for another day. What happened to my mom was so sudden that I was not able to become her legal proxy.

As a family member I was able to become my mom's Designated Representative. This means I am designated to receive information and to assist and/or act on behalf of my mother to the extent permitted by New York State Law. I filled out and signed a form at this Nursing home which enables me to handle the care and treatment and well being of my mom. Please note this is not the same as being a legal proxy . The place where the coma patient is in should provide this vital information to you. If they do not, you should ask for this information packet that explains your rights and how you can take care of the coma patient's care and treatment.

Becoming someone's legal proxy or appointing one for ourselves is something we should all think about doing. If we wait and put it off it may become to late to act upon this. Unfortunately illness or injury or circumstances can happen to any of us that makes us unable to appoint the person we want to handle all our medical affairs, legal affairs and wishes.

I was not totally happy with the Nursing Home my mother was in. They only had a small "glorified" Traumatic Brain Injury Program. I am trying to get her moved into a well cared treated TBI Program. My mom needs both the TBI stimulation (I'm not sure she is getting it there! I know my mom responds more to myself and my aunt:) and good medical care which this Nursing Home can not totally give.

I finally found a new place (Nursing Home) for my mom that has a licensed and accredited TBI Program. I had her transferred on 5-12-98. I made sure this time by visiting the Nursing Home in advance, that the place I was moving my mom into had a well cared treated TBI Program and also gave good medical care too. I am impressed with this new Nursing Home's TBI Staff and the way they are relating to my mom. Monday (May 18th) was my mom's Birthday. I asked the social worker if she could get a few people to come in and sing Happy Birthday to my mom. Over 15 people came in from the TBI Staff and sang their hearts out! They went up to her and touched her face and congratulated her! She cried a lot on and off that day. They are going to take her outdoors in a day or two in a wheel chair!!!! My mom still has bad bed sores that the other nursing home did not take care of because she was lying down prone most of the time! They are treating the bed sores now.

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Click Here: New Update For My Mom's Most Recent Update.

Past update:

My mother went back into the hospital on 12-30-98 due to heavy breathing and a fever When we got the call it was a little after Midnight. We got dressed and went straight to the emergency room and right away I saw my mom was hyperventilating. Both my aunt and I were able to calm her down and the heavy breathing eased. My mom is now on a regular hospital floor not in ICU (Intensive Care Unit). She has no fever and still not fully recovered yet.

I had about had it with the medical care my mother is getting at this TBI Nursing Home. To give an example: My mom sneezed 4 times On Christmas Day. This was the first time we saw her lift her head up by herself in a year! I sneezed that night and I grabbed a tissue my mom could not do that. What my mom did was picked up her head than bent her head down so she would not sneeze in my direction or my aunts direction! Than her eyes opened real wide and look around the room like she was seeing it for the first time. She than looked at me from head to toe with recognition. I had this playing over and over in my mind and finally realized what she had done and that's awesome!

A TBI Nurse just said this was reflexes! I told her they were not just reflexes. I told the TBI Staff that I was sure my mom was getting sick again. I also told the Social Worker too. My mom was sneezing and coughing. I saw was pure yellow mucus coming out of her nose.

They did not listen to me and she has been in the hospital as of 1-4-98 with a high white cell blood count and fever. The place she is in now has a TBI Unit in the hospital the doctor t had told me today she is in a deeper coma! She would remain this way. He refuses to do a MRI test on my mom when she is feeling better.

The nursing home just changed that Air Oxygen Compressor with a tube which they could have done right away to make it quieter. She was stuck with a motor boat engine noise for over almost a year! My mom's health and mental status has decline some what. I will be getting her into a good Nursing home for now to treat her medical problems so she is medical stable than I will move her into a TBI Place. In the mean time my aunt and I will be giving her stimulation that includes the five senses ( five sensory modalities are: vision, hearing, touch, taste and smell) We know 100% she is in there and she is slowly coming back. We will not give up hoping!!!!! We could use your prayers for my mom and all coma patients too!

I will keep on moving my mom until she gets into a place that gives good medical care as well as good stimulation too. I have learned to stay on top of my mothers medical affairs as well as all aspect of her care. Don't be afraid to do this for you loved one or someone you know who is in a coma.

Past Update:

My mother went back into the hospital on 6-14-98 because her blood pressure dropped very low, down to 5/100. Her blood sugar level was very low too. (Before she went into a coma, she'd previously had problems with diabetes and high blood pressure.) They were able to get her blood pressure & sugar level more normal almost right away.

I'm glad I went to see my mom as soon as I could because the hospital had put her on a catheter which, in her past Nursing Home and Hospital stays, caused her to get two bad urinary infections accompanied by high fevers from being on the catheters. Unfortunately, she ended up getting another bad urinary infection while in this Hospital, probably from the few days she was on the catheter. I phoned her new Doctor and told him to tell the Nursing Staff to put my mom in an adult diaper. I found out that the Nursing Staff had put her on a pad instead of in an adult diaper. I asked this Doctor if my mom is lying on her bodily functions could this be reinfecting infecting her? I also asked him wouldn't it be better to use an adult diaper where the layer next to her would be dry. The doctor told me it made no difference; that the pad was okay to use. He also said using pads was "hospital policy." This hospital does not have or use adult diapers!

Meanwhile my mom was not getting any better; her urinary infection got worse and she ended up in isolation. When we went to visit my mom we had to put on a gown, mask and gloves to see her. I became more convinced that she was getting reinfecting- infected by lying on that pad! I knew for sure that my mother needed to be put into an adult diaper! I started making phone calls to both the hospital and nursing home. I had to talk to the Nurses Administration Office at the Hospital who then directed me to call the Head Nurse facilitator to put an end to this Pad verse Adult Diaper caper! The Doctor finally put in the order and they said my mom will be in the Adult Diaper as soon as the order came in. Thankfully between the tests, cultures, right antibiotic and adult diaper my mom finally beat this Urinary Tract Infection by Sunday July 26th. She had been in this Hospital for a month and half and finally got out of the hospital on Tuesday July 28th. She was moved back to the TBI Unit at the Nursing Home where they are continuing the stimulation activities. My mom is now turning her head and looking at the person(s) that come into her room!

I have been informed by the Nursing Home that, in case of a medical emergency, my mom would have to go back to this last hospital that she just got out of because it is the nearest hospital. Unfortunately I was disappointed with the care she received there. I have made it clear to them and her Doctor that my mother has to be in an adult diaper at all times. No more catheters or pads. I also told the Nursing Home that I wanted to change hospitals for non-emergency situations so they have agreed to designate another hospital for my mom.

*Please Note* that in my mother's case she has gotten three bad urinary infections, accompanied by high fevers (This last infection she has had low grade fevers) from being on the catheters. If the coma patient is prone to urinary infections and is on a catheter talk to your doctor and ask if the catheter could be causing the urinary infections. If it is caused by the catheter ask your doctor to put the coma patient in an adult diaper.

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Here are some questions you should ask yourself:

At the first Nursing Home my mom was moved out of, whenever I would ask the nurse: How is my mom doing? The nurse would merely state: "She is stable." When I would ask: "Any response?" The Nurse replied: "Her eyes are open but it's just an involuntary response." [Was she for real???]' My mom was not getting any stimulation from this Nursing Home.

Please keep this in mind that when you see the coma patient responding you may think it's major accomplishment while the TBI Staff may not agree with you. Family and friends are very important to the coma patients stimulation process and recovery. You may be getting a better response which could really be a Giant Step towards the coma patient's recovery. A good TBI Program or Unit works with the family and includes them in the coma patients stimulation program.

The Doctors and TBI Staff should keep the family updated on the coma patient progress and medical condition. You and your family have a right to question every thing the Doctors and TBI Nursing Staff is doing to the coma patient. Keep on top of his/her medical status and know what's being medically done to the coma patient. Also be a "Pest" if you have to be!:-)

If you are not happy with where the coma patient is now there are other TBI Programs available. Make sure you get a copy of the PRI Report or any other records to show to the places you will be visiting. This will give the TBI Place the information they need to access the coma patients condition and they will be able to tell you if their program is right for the coma patient. You can also get the Social Worker from the place the coma patients is in to fax the PRI or other medical information to places you are interested in. I did this but also ended up faxing the PRI Report to other places I wanted to get my mom into.

When you're looking at Rehab Facilities (TBI Programs) near you keep this in mind: Visit the Rehab Facilities and see for yourself what type of stimulation and TBI Program they have. Does the coma arousal therapy include the five sensory modalities (vision, hearing, touch, taste and smell) Ask them to show you around and demonstrate what type of TBI Program they will do with coma patients. At first I did not do this with my mom but this time I got my mom into a place that has a good TBI Program and unit. I know I will have to keep a close eye and make sure my mom is getting the best TBI stimulation as well as medical care.

My aunt and I have been doing the following:

We have been getting some results with my mother! I put a walkman on my mom each time I go to see her with her favorite music. I put on a tape of "That's Entertainment" on her and my mom really started to cry. I changed the tape to the Beatles (She loves the Beatles:) she was crying even more listening to that too! My mom was really "hearing" the music and reacting to it! She now moves her mouth in a stubborn line when she is mad! Each time we visit her we see more and more of my mom waking up! It's still a waiting game and a long haul but she is more alert and awake. My aunt and I are not giving up on my mom totally waking up. We still see and feel a part that is vibrant and alive. We are praying she will wake up soon. Your prayers would be greatly appreciated for my mom and other coma patients!:-) Also for all the beloved coma patients that have passed on; my prayers are with them and their families.

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Waving  FamilyIt is important for the whole family and friends to become involved in the coma patient's recovery program. Any TBI Program or Unit should stressed this. Also, I have read that for anyone going through this crisis, it is a very stressful time. There are Coma Support groups that can help. Most of the coma sites have information on coma support.

I hope by my telling you about what happened to my mother, and the information that I have learned helps you in some way. Please keep checking back I will keep updating the page with new information.

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Here are some of the Coma Help Links that I found. I did not put on all of them, just a few. There are many web site that have information on Coma Help. The links that I have put on this page all have great Help and Resources pages set up that lead to other Coma Help sites.
If you know of a good Coma Help Site please
E-mail me and let me know. I will add it to my list.

 

New Update Terri's web site has been updated and is now called "The Terri Schindler Schiavo Foundation." I recommend visiting this site. It has very informative information and valuable insights as well. " You can go to their website at: http://www.terrisfight.org/

Terri Schindler-Schiavo passed away on Thursday March 31, 2005 at approximately 9am in a Florida hospice. Terri did not die a "peaceful" death, she died an unnecessary, uncomfortable and cruel death as a result of the removal of her feeding tube. Unfortunately Terri did not have a "Living Will" or "Proxy" so her husband, as her "legal guardian," went against her parents wishes and allowed her to die a painful death.

Terri is now at peace in Heaven. My heart and prayers go out to Terri's family and friends. Terri leaves behind an important legacy . What happened to her teaches all of us an important lesson. The laws need to be changed so that in the future, deprivation deaths are not forced upon coma patients; and for that matter, ANY disabled, elderly and/or chronically ill individuals.

Terri was a disabled woman who could not speak for herself. We need to be a voice that will stop others from suffering Terri's fate of being denied nourishment resulting in her death by starvation. Please go to Terri web site at: http://www.terrisfight.org/ We all can help by the way we vote, and by writing letters to Members of Congress as well as our local politicians. Write to newspapers and call in to express your views on any of the "talk-radio" stations. We can also e-mail and call our elected officials to change the laws for the better: keeping the disabled, elderly and chronically ill individuals safe from the way the laws are now.

Making a "Living Will" or becoming someone's "legal proxy" or appointing one for ourselves is something we should all think about doing. If we wait and put it off it may become too late to act upon this. Unfortunately illness or injury or circumstances can unexpectedly happen at any time, making us unable to appoint the person we want to handle all our medical affairs, legal affairs and wishes. To make sure this doesn't happen, learn about and download a "living will" at these web sites:

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Please visit the New Update Page for more Coma Information From (8-27-2000) and Past Updates on my mom and stimulation techniques.

I have also added new information and an image showing the sponge stick that is called Toothettes. Please Click Here

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Cute Little AngelClick to go to: Prayer Coma Poem Page

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To turn off music click in middle of Live Update Graphic icon
and hold down mouse button to highlight Pause.
This will Pause the music.
Playing: "We've Only Just Begun"

Remember Never Give Up Hope!

 

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*Please Note*

This message is for the individual's that have e-mailed me
with fabricated coma stories and phony e-mail addresses.
I pray you never experience the horror, shock,
sense of loss, despair and frustration of
having a loved one or someone you know
who ends up tragically in a coma.

 

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copyright Copyright 1998-2009 by Susan Spector-Miano

Updated 4-14-2009