We are still waiting for a place to put my mom. There are not very many places who would like to take her ... and she keeps getting denied. She is too much of a liability to even a locked facility - if she gets out. Its a frustration for myself and her current nursing home.
She is currently in the hospital, in which they are playing with her medications to see if there is any indication in which she will slow down. The Alzheimer's is causing a severe chemical imbalance. All the sedatives that would knock you and I out for a good 12 hours, are making her move faster.
I keep apologizing to her nurse and he stopped me in his tracks. "Shana, this is not your fault, its the disease. I went through it with my parents ... We just need to make her stable." Its always nice to know that people have gone through this and we're not alone. We're still trying ... on so many levels.
I celebrated my 27th birthday on Monday. Here's to another year of life, liberty and the pursuit :)
Thursday, May 31, 2007
Thursday, May 24, 2007
Mixed Blessings
In the world of Dementia, the patient longs for home - often times asking repeatedly to go home. They associate home with comfort and memories. Somewhere when they were once in control. It is wanting to return to that feeling. Being a woman of impulse, she acts on this feeling. Often.
What is a humorous quality of stubborness soon becomes a liability. My mother continues to stay on the secure doors and sound the alarm. She is cognitive enough to understand that if she leans on the doors for 15 seconds, they will open. She also now has a possee that will follow her out the door. It is starting to take more manpower to redirect her from the doors, and within minutes she will return because she cannot remember that this is wrong. It has become frustrating for everyone involved.
As you can see, this situation is no longer a feasible. She has been there for all of 45 days. Colonial Manor has asked that she be moved as their secure unit is not all that secure.
The problem becomes that she continues to be denied as nursing homes do not want to accept some one who will try to escape at every given turn. Colonial Manor is helping me to find a new facility but it continues to get harder and harder with each day.
But good news came today. She now is officially on Medicaid. This will alleviate all medical bills and keeping her safe in a nursing facility. I have been trying to get her on Medicaid for the past year - it has been a grueling process of bureacratic tape, but we are finally here. At 60 years old, there is not alot out there in the way of financial help.
Now we just have to find a new home. Please keep us in your prayers and we go through this grueling process. Will keep you updated on the latest news!
What is a humorous quality of stubborness soon becomes a liability. My mother continues to stay on the secure doors and sound the alarm. She is cognitive enough to understand that if she leans on the doors for 15 seconds, they will open. She also now has a possee that will follow her out the door. It is starting to take more manpower to redirect her from the doors, and within minutes she will return because she cannot remember that this is wrong. It has become frustrating for everyone involved.
As you can see, this situation is no longer a feasible. She has been there for all of 45 days. Colonial Manor has asked that she be moved as their secure unit is not all that secure.
The problem becomes that she continues to be denied as nursing homes do not want to accept some one who will try to escape at every given turn. Colonial Manor is helping me to find a new facility but it continues to get harder and harder with each day.
But good news came today. She now is officially on Medicaid. This will alleviate all medical bills and keeping her safe in a nursing facility. I have been trying to get her on Medicaid for the past year - it has been a grueling process of bureacratic tape, but we are finally here. At 60 years old, there is not alot out there in the way of financial help.
Now we just have to find a new home. Please keep us in your prayers and we go through this grueling process. Will keep you updated on the latest news!
Sunday, May 20, 2007
Friday, May 4, 2007
Its a Gibbs Thing
I had a conference call with my mom's nurses today. As we went through certain situations - I had to laugh. Her personality is trying to break through the disease. You know her. She is one stubborn lady. It runs in the blood ...
They say she wont stay off the security doors. And that when they ask her to step away from the door (seperating the ALZ unit from the rest of the nursing home), she will look at them, smirk and put ONE finger on the door. Yes, she yielded ... but she still makes her gesture. I can see it "You will not stop me".
And the journalist she is, she is still taking notes and writing - although a little hard to read - she is still able to, which still makes my heart sing. And as clever as she is - she can still find the phone at the nurse's station, just in case, I'm sure. She may not have her memory but she has not lost that bit of herself. I ask God everyday for the grace to keep it coming.
It has been one year since she was first admitted to the hospital and this whole ordeal began. Although, the denial had been going on for much longer. I can't believe how far and fast it has all progressed since then. She is getting used to her new home. It is never easy - especially with Alzheimer's ... getting used to new environments and new people. But three weeks later, she begins to settle.
As for me, I'm ok. It is tough, I admit that now (very hard to do). BUT I get through. We keep on keepin' on. My mom was one of the most amazing things that happened to me, and I will forever know that. I was so fortunate to spend the time with her that I did. I have never questioned anything in my life and I will not begin now. As my great cousin 10 year old Maxx said at Thanksgiving - "Shana, you're ok, you're mom is always with you."
Yes ... yes, she is. I have never doubted that.
God love the innocence of children to keep us going.
They say she wont stay off the security doors. And that when they ask her to step away from the door (seperating the ALZ unit from the rest of the nursing home), she will look at them, smirk and put ONE finger on the door. Yes, she yielded ... but she still makes her gesture. I can see it "You will not stop me".
And the journalist she is, she is still taking notes and writing - although a little hard to read - she is still able to, which still makes my heart sing. And as clever as she is - she can still find the phone at the nurse's station, just in case, I'm sure. She may not have her memory but she has not lost that bit of herself. I ask God everyday for the grace to keep it coming.
It has been one year since she was first admitted to the hospital and this whole ordeal began. Although, the denial had been going on for much longer. I can't believe how far and fast it has all progressed since then. She is getting used to her new home. It is never easy - especially with Alzheimer's ... getting used to new environments and new people. But three weeks later, she begins to settle.
As for me, I'm ok. It is tough, I admit that now (very hard to do). BUT I get through. We keep on keepin' on. My mom was one of the most amazing things that happened to me, and I will forever know that. I was so fortunate to spend the time with her that I did. I have never questioned anything in my life and I will not begin now. As my great cousin 10 year old Maxx said at Thanksgiving - "Shana, you're ok, you're mom is always with you."
Yes ... yes, she is. I have never doubted that.
God love the innocence of children to keep us going.
The 36 Hour Day
It has been suggested to me to pick up the book, The 36 Hour Day. It was first published in 1981 - and although research has come along since then ... the disease has not. PATTERNS, as the nurses call it. It discusses caretaking features - although we are not taking care of the disease, its always a comforting to know how to see the disease. The way we handle the disease changes - but the disease itself does not. I have yet to pick it up but will at the end of the Legislative Session in 24 days.
Review of the book: "It has been estimated that five percent of older people suffer from severe intellectual impairment. So these two eloquent and readable guides will be much in demand as the number of families facing the challenge of caring for a relative with some form of dementing illness continues to grow. First published in 1981, The 36-Hour Day follows the format of the previous two editions but has been thoroughly updated to incorporate new information on the latest research, several drugs that hold promise, and genetic aspects of Alzheimer's. The heart of the guide remains unchanged, focusing on helping families cope with this progressive and irreversible disease. Besides tips on how to care for the demented during the various stages of the disease (for example, place a picture of a toilet on the bathroom door), the text discusses the different kinds of help available and how to seek it. Financial and legal issues are well covered, while sections on nursing homes and other alternative living arrangements provide advice and practical suggestions. Appendixes list recent books, videos, web sites, and U.S. and international organizations. The thrust of GentlecareR is a well-argued plea for a radical change in the way we care for Alzheimer's patients. In outlining her program, Jones states that this rethinking involves people, physical space, and individualized programs. Everyone in the physical plant, from maintenance worker to director, belongs to the care-giving team, as do family members and volunteers. Only when impaired persons can no longer perform for themselves a task like feeding themselves or dressing should it be done for them. Care should concentrate on what can be done, not what cannot. Because her emphasis is on the need for a comprehensive program of care and concentrates more on the institutional setting, Jones does not provide as many practical suggestions or the depth of advice for home care that Mace and Rabins do. Rather, her book describes how facilities can be designed and staffs trained to optimize the quality of life for patients. Both titles are highly recommended: Rabins and Mace for the practical help and advice, Jones for her eloquent presentation of a comprehensive program that treats patients with dignity.AJodith Janes, Cleveland Clinic Fdn. Copyright 1999 Reed Business Information, Inc. "
Review of the book: "It has been estimated that five percent of older people suffer from severe intellectual impairment. So these two eloquent and readable guides will be much in demand as the number of families facing the challenge of caring for a relative with some form of dementing illness continues to grow. First published in 1981, The 36-Hour Day follows the format of the previous two editions but has been thoroughly updated to incorporate new information on the latest research, several drugs that hold promise, and genetic aspects of Alzheimer's. The heart of the guide remains unchanged, focusing on helping families cope with this progressive and irreversible disease. Besides tips on how to care for the demented during the various stages of the disease (for example, place a picture of a toilet on the bathroom door), the text discusses the different kinds of help available and how to seek it. Financial and legal issues are well covered, while sections on nursing homes and other alternative living arrangements provide advice and practical suggestions. Appendixes list recent books, videos, web sites, and U.S. and international organizations. The thrust of GentlecareR is a well-argued plea for a radical change in the way we care for Alzheimer's patients. In outlining her program, Jones states that this rethinking involves people, physical space, and individualized programs. Everyone in the physical plant, from maintenance worker to director, belongs to the care-giving team, as do family members and volunteers. Only when impaired persons can no longer perform for themselves a task like feeding themselves or dressing should it be done for them. Care should concentrate on what can be done, not what cannot. Because her emphasis is on the need for a comprehensive program of care and concentrates more on the institutional setting, Jones does not provide as many practical suggestions or the depth of advice for home care that Mace and Rabins do. Rather, her book describes how facilities can be designed and staffs trained to optimize the quality of life for patients. Both titles are highly recommended: Rabins and Mace for the practical help and advice, Jones for her eloquent presentation of a comprehensive program that treats patients with dignity.AJodith Janes, Cleveland Clinic Fdn. Copyright 1999 Reed Business Information, Inc. "
Wednesday, April 11, 2007
By an Act of Congress and the Grace of God ...
It has been a whirlwind 24 hours - but my mother is in a new home. With the help of Capitol staff, my new best friend at the Department of Health and Human Services, my tride and true friends and my very gracious loving family - I have survived. Thank you.
She is on a secure unit and with other patients with Alzheimer's, and is no longer odd man out. It will take her some getting used to, but she is no longer alone in this lonely disease.
If you would like to send cards and letters, her address is:
Sharon Gibbs
c/0 Colonial Manor Care Center
821 US Highway 81 West
New Braunfels, Texas 78130
I thought you would like to be the first to know. :)
She is on a secure unit and with other patients with Alzheimer's, and is no longer odd man out. It will take her some getting used to, but she is no longer alone in this lonely disease.
If you would like to send cards and letters, her address is:
Sharon Gibbs
c/0 Colonial Manor Care Center
821 US Highway 81 West
New Braunfels, Texas 78130
I thought you would like to be the first to know. :)
Friday, April 6, 2007
Hello everyone.
After much thought I have decided to return to this idea of this blog. Welcome to entry #2.
These are trying times. Mom has regressed very severely since January when I began the idea of this blog. She officially has Lewy Body Dementia - you will find a description of the disaese below, to further help you further understand. Basically she has both symptoms of Parkinson's disease and Alzheimers. Needless to say, this is a not fun combination.
She is no longer talking, her wandering has become a severe problem, and is now pocketing food and not swallowing. The life in her eyes is gone, catatonic almost. Common in Lewy Bodies, she is currently living a world of thirty years ago - making it hard for her to recognize even me. Because of this, she is now beyond the care of the nursing staff and I am having to deal with the responsibility of moving her for the third time. This time to a full blown Alzheimer's unit. And honestly am unable to tell you how much time is left. She may have a few months or years, they are unable to determine.
As I have been working in the Texas Capitol for the last few months - I have been able to put a lot of my effort into finding resources and people to truly help. The problem with the bureaucratic system is running into dead ends and worst, being pawn off onto other clueless entities. It is a daily battle. I do not know how people who do not have legislative connections or "inquiries" truly get through the jungle. But it has been a god send to have people willing to guide me and introduce me to new avenues. It has taken alot of research and studying - I'm beginning to wonder where my medical degree is these days. :)
Happy Easter to everyone. Easter being the time of renewal, rebirth and rejoicing - I am truly blessed ... please keep us in your prayers.
After much thought I have decided to return to this idea of this blog. Welcome to entry #2.
These are trying times. Mom has regressed very severely since January when I began the idea of this blog. She officially has Lewy Body Dementia - you will find a description of the disaese below, to further help you further understand. Basically she has both symptoms of Parkinson's disease and Alzheimers. Needless to say, this is a not fun combination.
She is no longer talking, her wandering has become a severe problem, and is now pocketing food and not swallowing. The life in her eyes is gone, catatonic almost. Common in Lewy Bodies, she is currently living a world of thirty years ago - making it hard for her to recognize even me. Because of this, she is now beyond the care of the nursing staff and I am having to deal with the responsibility of moving her for the third time. This time to a full blown Alzheimer's unit. And honestly am unable to tell you how much time is left. She may have a few months or years, they are unable to determine.
As I have been working in the Texas Capitol for the last few months - I have been able to put a lot of my effort into finding resources and people to truly help. The problem with the bureaucratic system is running into dead ends and worst, being pawn off onto other clueless entities. It is a daily battle. I do not know how people who do not have legislative connections or "inquiries" truly get through the jungle. But it has been a god send to have people willing to guide me and introduce me to new avenues. It has taken alot of research and studying - I'm beginning to wonder where my medical degree is these days. :)
Happy Easter to everyone. Easter being the time of renewal, rebirth and rejoicing - I am truly blessed ... please keep us in your prayers.
Lewy Body Dementia
Dementia is a process whereby the person becomes progressively confused. The earliest signs are usually memory problems, changes in their way of speaking, such as forgetting words, and personality problems. Cognitive symptoms of dementia include poor problem solving, difficulty with learning new skills and impaired decision making.
Other causes of dementia should be ruled out first, such as alcoholism, overuse of medication, thyroid or metabolic problems. Strokes can also cause dementia. If these reasons are ruled out then the person is said to have a degenerative dementia. Lewy Body Dementia is second only to Alzheimer's disease as the most common form of dementia.
Fluctuations in cognition will be noticeable to those who are close to the person with LBD, such as their partner. At times the person will be alert and then suddenly have acute episodes of confusion. These may last hours or days. Because of these fluctuations, it is not uncommon for it to be thought that the person is "faking". This fluctuation is not related to the well-known "sundowning" of Alzheimer's. In other words, there is no specific time of day when confusion can be seen to occur.
Hallucinations are usually, but not always, visual and often are more pronounced when the person is most confused. They are not necessarily frightening to the person. Other modalities of hallucinations include sound, taste, smell, and touch.
Parkinsonism or Parkinson's Disease symptoms, take the form of changes in gait; the person may shuffle or walk stiffly. There may also be frequent falls. Body stiffness in the arms or legs, or tremors may also occur. Parkinson's mask (blank stare, emotionless look on face), stooped posture, drooling and runny nose may be present.
REM Sleep Behavior Disorder (RBD) is often noted in persons with Lewy Body Dementia. During periods of REM sleep, the person will move, gesture and/or speak. There may be more pronounced confusion between the dream and waking reality when the person awakens. RBD may actually be the earliest symptom of LBD in some patients, and is now considered a significant risk factor for developing LBD. (One recent study found that nearly two-thirds of patients diagnosed with RBD developed degenerative brain diseases, including Lewy body dementia, Parkinson’s disease, and multiple system atrophy, after an average of 11 years of receiving an RBD diagnosis. All three diseases are called synucleinopathies, due to the presence of a mis-folded protein in the brain called alpha-synuclein.)
Sensitivity to neuroleptic (anti-psychotic) drugs is another significant symptom that may occur. These medications can worsen the Parkinsonism and/or decrease the cognition and/or increase the hallucinations. Neuroleptic Malignancy Syndrome, a life-threatening illness, has been reported in persons with Lewy Body Dementia. For this reason, it is very important that the proper diagnosis is made and that healthcare providers are educated about the disease.
Other Symptoms
Visuospatial difficulties, including depth perception, object orientation, directional sense and illusions may occur.
Autonomic dysfunction, including blood pressure fluctuations (e.g. postural/orthostatic hypotension) heart rate variability (HRV), sexual disturbances/impotence, constipation, urinary problems, hyperhidrosis (excessive sweating), decreased sweating/heat intolerance, syncope (fainting), dry eyes/mouth, and difficulty swallowing which may lead to aspiration pneumonia.
Other psychiatric disturbances may include systematized delusions, aggression and depression. The onset of aggression in LBD may have a variety of causes, including infections (e.g., UTI), medications, misinterpretation of the environment or personal interactions, and the natural progression of the disease.
Prognosis and Stages
No cure or definitive treatment for Lewy body dementia has been discovered as yet. The disease has an average duration of 5 to 7 years. It is possible, though, for the time span to be anywhere from 2 to 20 years, depending on several factors, including the person’s overall health, age and severity of symptoms.
Defining the stages of disease progression for LBD is difficult. The symptoms, medicine management and duration of LBD vary greatly from person to person. To further complicate the stages assessment, LBD has a progressive but vacillating clinical course. It is typical to observe a significance progression, followed by regression back to a higher functioning level. Downward fluctuations are often caused by medications, infections or other compromises to the immune system, but may also be due to the natural course of the disease.
Other causes of dementia should be ruled out first, such as alcoholism, overuse of medication, thyroid or metabolic problems. Strokes can also cause dementia. If these reasons are ruled out then the person is said to have a degenerative dementia. Lewy Body Dementia is second only to Alzheimer's disease as the most common form of dementia.
Fluctuations in cognition will be noticeable to those who are close to the person with LBD, such as their partner. At times the person will be alert and then suddenly have acute episodes of confusion. These may last hours or days. Because of these fluctuations, it is not uncommon for it to be thought that the person is "faking". This fluctuation is not related to the well-known "sundowning" of Alzheimer's. In other words, there is no specific time of day when confusion can be seen to occur.
Hallucinations are usually, but not always, visual and often are more pronounced when the person is most confused. They are not necessarily frightening to the person. Other modalities of hallucinations include sound, taste, smell, and touch.
Parkinsonism or Parkinson's Disease symptoms, take the form of changes in gait; the person may shuffle or walk stiffly. There may also be frequent falls. Body stiffness in the arms or legs, or tremors may also occur. Parkinson's mask (blank stare, emotionless look on face), stooped posture, drooling and runny nose may be present.
REM Sleep Behavior Disorder (RBD) is often noted in persons with Lewy Body Dementia. During periods of REM sleep, the person will move, gesture and/or speak. There may be more pronounced confusion between the dream and waking reality when the person awakens. RBD may actually be the earliest symptom of LBD in some patients, and is now considered a significant risk factor for developing LBD. (One recent study found that nearly two-thirds of patients diagnosed with RBD developed degenerative brain diseases, including Lewy body dementia, Parkinson’s disease, and multiple system atrophy, after an average of 11 years of receiving an RBD diagnosis. All three diseases are called synucleinopathies, due to the presence of a mis-folded protein in the brain called alpha-synuclein.)
Sensitivity to neuroleptic (anti-psychotic) drugs is another significant symptom that may occur. These medications can worsen the Parkinsonism and/or decrease the cognition and/or increase the hallucinations. Neuroleptic Malignancy Syndrome, a life-threatening illness, has been reported in persons with Lewy Body Dementia. For this reason, it is very important that the proper diagnosis is made and that healthcare providers are educated about the disease.
Other Symptoms
Visuospatial difficulties, including depth perception, object orientation, directional sense and illusions may occur.
Autonomic dysfunction, including blood pressure fluctuations (e.g. postural/orthostatic hypotension) heart rate variability (HRV), sexual disturbances/impotence, constipation, urinary problems, hyperhidrosis (excessive sweating), decreased sweating/heat intolerance, syncope (fainting), dry eyes/mouth, and difficulty swallowing which may lead to aspiration pneumonia.
Other psychiatric disturbances may include systematized delusions, aggression and depression. The onset of aggression in LBD may have a variety of causes, including infections (e.g., UTI), medications, misinterpretation of the environment or personal interactions, and the natural progression of the disease.
Prognosis and Stages
No cure or definitive treatment for Lewy body dementia has been discovered as yet. The disease has an average duration of 5 to 7 years. It is possible, though, for the time span to be anywhere from 2 to 20 years, depending on several factors, including the person’s overall health, age and severity of symptoms.
Defining the stages of disease progression for LBD is difficult. The symptoms, medicine management and duration of LBD vary greatly from person to person. To further complicate the stages assessment, LBD has a progressive but vacillating clinical course. It is typical to observe a significance progression, followed by regression back to a higher functioning level. Downward fluctuations are often caused by medications, infections or other compromises to the immune system, but may also be due to the natural course of the disease.
Tuesday, January 9, 2007
Welcome
I started this blog for you ... my family and close friends.
As you may know, I havent exactly been very good at the phone in recent months. In an effort to keep everyone to speed and in the loop on the progression of our journey - this blog was born. A writer by trait, this only seemed natural.
It is my goal one day to make our journey known. As I began searching the internet for anything on this encounter, in what seems like years now, I found solice in other's words. In others blogs. There is not alot out there on dementia, on either side of the battle. I hope one day we are able to change that. This is the first step.
I am a very private person, but know that one day our inspiration may facilitate anothers hope to keep moving on, as we have done. Although on the vast chaotic world of the internet, this blog is not open to the public - but seen only by those I invite... it is safe from wandering eyes.
I want to take a moment to thank you all for the outpouring of support I have received in the last year. It's been a tough year, but we've made it. And I have you to thank. Each of you has given me a gift so dear and I am very grateful to have you in my life.
But you dont just meant the world to me, but to my mom. That is why you are here, our nearest and dearest. The memories we have shared are priceless. If I were to mention each of you, she would be able to share a few good memories. That is what life is all about.
I cant promise constant updates (as I am so very new to this whole thing) but keep checking back ... you never know what you might find. Of course, I'll be picking up the phone also - just thought this would do in those in between times!
As you may know, I havent exactly been very good at the phone in recent months. In an effort to keep everyone to speed and in the loop on the progression of our journey - this blog was born. A writer by trait, this only seemed natural.
It is my goal one day to make our journey known. As I began searching the internet for anything on this encounter, in what seems like years now, I found solice in other's words. In others blogs. There is not alot out there on dementia, on either side of the battle. I hope one day we are able to change that. This is the first step.
I am a very private person, but know that one day our inspiration may facilitate anothers hope to keep moving on, as we have done. Although on the vast chaotic world of the internet, this blog is not open to the public - but seen only by those I invite... it is safe from wandering eyes.
I want to take a moment to thank you all for the outpouring of support I have received in the last year. It's been a tough year, but we've made it. And I have you to thank. Each of you has given me a gift so dear and I am very grateful to have you in my life.
But you dont just meant the world to me, but to my mom. That is why you are here, our nearest and dearest. The memories we have shared are priceless. If I were to mention each of you, she would be able to share a few good memories. That is what life is all about.
I cant promise constant updates (as I am so very new to this whole thing) but keep checking back ... you never know what you might find. Of course, I'll be picking up the phone also - just thought this would do in those in between times!
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