The Reclaiming of Leah’s Life

Once again I apoligise for the length between posts, my only excuse is life gets in the way of me posting regularly, or keeping up with groups I was once very active in.  I rarely see my mother these days mainly because her attitude has gone from bad to worse. For example, my aunts daughter is getting married in April and she was telling my other on the phone about buying her daughter’s wedding dress. My mother had a fit due to that money could have been sent to her for more cigarettes. I had hoped my aunt finally got it after the comment but alas it is not to be.

I’ve detirmined with the help of the wonderful man in my life that most of my so called family members are simply unhealthy and we are discussing totally servering ties with most of them. The exception being my 22 year old daughter who is making great strides to get her life on track. Sadly it may be the only option available. I do not intend to fall back into old habits and be sick or depressed all the time.

Granted at times depression still sneaks up on me for a day or two. However, I’m getting pretty good at reining it in when it happens.  I guess in some areas I still hold out a small ray of home my family will figure it all out and become decent human beings. Though I know that is not going to happen.

I’m in a really good place mentally, emotionally and physically and intend to stay there. Life is not always easy but at least the tough spots are my own and not the doing of other people.

Lots of changes since  I posted last. I am sorry it has been so long between posts but taking my life back has been an uphill battle which continues.

We found my mother a nice group home which she now lives in. I am able to visit once every couple of week so it works well. Granted it costs me a fortune but it is worth it.

My son and his girlfriend have moved into a house of their own, both are working and expecting a child in January.

Sadly I have had to severe ties with my oldest daughter who is engaging in some self destructive behaviors of which she does not want to change. She had become an emotional and finanical leach and I was again sick all the time. So the relationship for now is non-existant.

My 22 year old has a new boyfriend and they are planning on moving to Indiana in Feb.

My former fiance and I ended our relationship months ago and I disovered some things he was doing I was unaware of. However this is not a bad thing. I am currently seeing a wonderful man who is supportive and loving. We are not rushing things but taking them slow mainly due to my own fears.

Next in May I was robbed and held at gunpoint for 90 minutes and was shot at. The person has not be caught and I am now suffering from PTSD. I can not enter gas stations without having a panic attack but I am working on healing from that.

My health is much better with no trips to the hospital since the Diverticulaitis. I will eventually have to have ulcer surgery but for now it is under control.

It is off how changes in my life have caused such wonderful changes so I am feeling better both phyiscally, mentally and emotionally.

Last night my oldest daughter and I were asked a question. It is one we have been asked before and will probably be asked again in the future. People who discover what we have been through in the last few years ask how we manage to get up each day and smile and be happy.

The answer at the time was because it is what we do. However, once again I find I am reflecting on why we do what we do and keep going. It would be easy to just curl up and give up.  There are days I want to give up. There are days I am sure I can not take one more bad experience or negative moment without reaching my limit and snapping. I become stressed; I lock myself in a room and cry where no one sees the tears. I scream, throw things and just have a royal fit. So, I do not smile every second of every day.

However, if I give up then the bad has won and I refuse to give into the bad stuff. Therefore, even when the pain inside feels unbearable I push it down, I get out of bed, and I enter the world and smile and try to live life.

Bad stuff happens, people and the world can let us down, and we can accept that it happens and keep going or we can let it destroy us. But just has bad stuff happens, so does the good.

So, how do we do it. We do it because the good is so much more powerful. It is the hug of a dear friend. It is the friend who drives you home when you have drank too much, it’s the friend who is just there and no words are needed to know they care. It’s the first bloom of a rose in the early spring. It’s the light in a child’s eye on Christmas morning. It’s the soft nudge for your pet. It’s your family letting you know despite it all they are always here for you. It’s finding the friend who restores your faith in humanity. It’s the first cry of a newborn entering the world. It’s the Good Samaritan who stops and gives a dollar to someone less fortunate. It’s the words of a song that can make you smile, or the sappy movie that makes you cry. It’s the warmth of a fire on a cold winter’s night or the coolness of a leap into the ocean on a hot summer’s day. It’s the memory of past times that can still make you smile and the looking forward to the new memories not yet made.

So why would we choose to not let the pain eat at our soul? Why do we choose to enjoy life? It is because the good is just too good to miss and we do not want to miss any of it.

Mother may be in denial of having chronic obstructive pulmonary disease (COPD), dementia caused by the COPD and at 63 having a body of an 85 year old, but I know the truth. More than 12 doctors in two states have all stated the facts and shown us the results. Each time we visit the doctor and do a breathing test she registers at severely restricted, even after a breathing treatment there is little improvement.

The doctors a year ago told her if she continued to smoke, her ability to breath and the pain involved would become so severe the strongest narcotics on the market would not be able to ease the suffering. She would die a slow painful death. In my mind, being told that my own behaviors would cause a complete inability to do even the basics of survival, that breathing would be extremely painful and my death would be ugly, I would listen and make the necessary behavioral changes to prevent such agony and stress of family members. But not mother, where she is concerned denial is not just a river in Egypt and anyone including doctors who all say the same thing in regard to her health are quacks. With that being said, I want to know what she has to look forward to and will present her with the findings. However, I know the result will have no affect or change her behaviors, but at least she will be even more informed of what she is going to experience, so when the time comes and I feel little or no pity for her level of pain, I will know she was fully informed and chose not to listen.

COPD is the fourth leading cause of death in the United States and is the term for a group of lung diseases that obstruct the airways I the lungs. Chronic bronchitis and emphysema are the two main deseases falling under the COPD umbrella. Once a person has COPD it can never be cured, however, with treatment and stopping smoking can prevent it from worsening. As COPD progresses the ability to breath becomes increasingly difficult until finally death occurs (Mayo Clinic, n.d.). My mother has both chronic bronchitis and emphysema and refuses to stop smoking despite smoking being the leading cause of COPD. So what does she have to look forward to?

As we have already witnessed by her numerous trips to the hospital and doctor for breathing difficulties acute exacerbations will occur. Acute exacerbation is an increase in shortness of breath and/or wheezing, as well as often an increase in the production of purulent sputum. Hospital stays are often needed to treat the symptoms. Over time the need for increased oxygen will become necessary until the lungs simply are not strong enough to sustain proper airflow for survival without medical intervention (Swierzewski III, 2000).

People who have COPD and acute exacerbations have an increased risk of respiratory failure which occurs when respiratory demands exceeds the respiratory systems ability to respond. Without intervention at this point the person will die. Mechanical ventilation is required at this stage. Mechanical ventilation is when a ventilator is used to force air into the lungs instead of having to rely on the respiratory muscles being used to draw in air (Swierzewski III, 2000).

There are two types of mechanical ventilation, invasive and noninvasive ventilation. Invasive ventilation is when an endotracheal tube is placed into the trachea and connected to a ventilator. This type of ventilation is most often administered to heavily sedated or unconscious persons. It is also the most effective form of mechanical ventilation.  Noninvasive ventilation is often used on conscious and cooperative patients. A mask is placed over the mouth and nose creating a seal and forcing air into the lungs. Many people if they change the conditions that placed them on the ventilator are able to be weaned off of its use. For those with severe COPD it is impossible to breath on their own so the rest of their life they will be dependant on the use of mechanical ventilation (Swierzewski III, 2000). Due to mother’s non-compliance I believe when the time comes invasive ventilation will be the only option.

Another complication to look forward to is Cor Pulmonale, which is pulmonary hypertension and right sided heart failure. Lower extremity swelling is often the first sign of Cor Pulmonale. This is caused by COPD making it necessary for the heart to work harder, especially the right side. Due to the poor gas exchange in people with COPD the decreased oxygen in the blood causing blood vessels to constrict and many of the capillaries surrounding the alveoli are destroyed and thus the heart hast work harder to force blood through the fewer constricted blood vessels. Thus, the right ventricle becomes enlarged, the walls of the heart thicken ad the chamber eventually is unable to contract properly and heart failure occurs (Swierzewski III, 2000).  Mother has already been told the walls of her heart are thickening so I am sure this is a road she will travel down if her lungs do not stop working first.

Other possible problems are pneumothorax which is a hole that develops in the lung allowing air to escape into the area between the lung and chest wall causing the lung to collapse. Due to COPD damaging the lungs people with COPD are at increased risk for developing a hole in their lung. The way this is treated is to place a tube into the space between the lung and chest wall to let air escape out of the space and re-expanding the lung. The tube must stay in place until the hole is repaired (Swierzewski III, 2000). Polycythemia is the body’s attempt to adjust to decreased amounts of blood oxygen caused by COPD. It is when the body increases the production of oxygen carrying red blood cells to compensate for the decrease blood oxygen levels. This over production can lead to a clogging of small blood vessels (Swierzewski III).

One top of all this COPD can increase the symptoms of dementia. Often if the COPD is treated and the person stops smoking the symptoms of dementia decrease (Merck Manual of Health and Aging, n.d.). I had asked the doctor about this since it appears that the more she smokes the less cognitive ability she has. Since the brain relies on oxygen is makes perfect sense that the more on smokes, making it impossible for the lungs to take in enough oxygen the brain would begin to cease functioning properly. Thus, the less oxygen that gets to her brain the less ability she has to function on a cognitive level.

One study found smoking increases the risk of dementia by 50%. The reason for this is smoking increases the risk of cerebrovascular disease which is tied to dementia. And oxidative stress is when the body has too many “free radicals, which are waste products created by chemical reactions in the body, (Such as caused by tar from cigarettes) (Consumers Affairs.Com, 2007).

So, while mother is ranting about it being her civil right to smoke (yes she does this), I have to disagree with her, Suicide is considered to be against the law, and yet she is permitted by law to engage in the very behavior which WILL cause her a painful death. In the early stages I tried to force the issue of her not smoking because the idea of a painful death is disturbing to me. However, the law says it is her right and soon she will be out of my home and can do as she pleases. Thus, in a few months at best I am sure she will be in some form of hospice care to attempt to manage unmanageable pain, hooked up to a machine to breath for her. Just as it is her right to do this to herself, it is my right to simply not care anymore and to feel no pity for her pain. After all she knows the consequences for her behaviors, but thanks to her narcissism believes somehow none of this is going to happen to her, after all she is better than everyone else who has ever had this diagnosis.

References

Consumers Affairs.Com (2007, Sept. 4). Researchers Link Smoking To Dementia. Retrieved Jan. 15, 2009, from http://www.consumeraffairs.com/news04/2007/09/dementia_smoking.html

Mayo Clinic (n.d.). COPD. Retrieved Jan. 15, 2009, from http://www.mayoclinic.com/health/copd/DS00916

Merck Manual of Health and Aging (n.d.).   Introduction, Alzheimer’s Disease,  Vascular Dementia, Lewy Body Dementia . Retrieved Jan. 15, 2009, from http://www.merck.com/pubs/mmanual_ha/sec3/ch27/ch27a.html

Swierzewski III, S. (2000, June 1). Chronic Obstructive Pulmonary Disease (COPD). Retrieved Jan. 15, 2009, from http://www.pulmonologychannel.com/copd/acuteexacerbation.shtml

Prior to finding a wonderful online support group of children caring for their elderly parents and the stress involved in doing such. I felt alone. Coupled with caring for a mother with Malignant Narcissistic Personality Disorder, I felt even more alone and as if I was drowning. In the year since mother moved in, I have forgotten how to smile, or enjoy life. The demands and stress were overwhelming and my psychological, emotional and physical health has declined. Others in this group experience the same thing on a daily basis. This online forum, gives us a place to cry, vent and not feel alone, in that we are finding a way to heal. This has led me to wonder what toll does care giving take on a person, and does caring for an abusive parent increase the risk.

While looking for answers I discovered there is a name for what many of us experience. It is called Caregiver Burden. Caregiver Burden is defined as “the physical, emotional and financial cost of providing care” (Karlikaya, Yukse, Varlibas, & Tireli, 2005). It is important to note the most caregivers experiencing caregiver burden do not seek help for themselves even when it is needed.  Informal caregivers, who are caregivers not paid to provide caregivers are often referred to as “the hidden or secondary patients” (Doval Mezey & Berkman, 2001).

Caregiver burnout is more extreme than caregiver burden. Caregiver burnout is described as “a state of physical, emotional and mental exhaustion that may be accompanied by a change in attitude from positive and caring to negative and unconcerned. Burnout can occur when caregivers don’t get the help they need, or do more than they are able either physically or financially. Caregivers who are “burned out” may experience fatigue, stress, anxiety and depression. Many caregivers also feel guilty if they spend time on themselves rather than the elder (WebMD, n.d.). (UH-OH, this sounds like me)

Factors, influencing the level of caregiver burden and burnout include socio-economic status, the current and past relationship between the caregiver and the elder, and the composition and health problems of the elder. “Primary stressors include the functional and behavioral deficits of the elder, and the frequency and unrelenting nature of the care demands” (Doval Mezey & Berkman, 2001). Thus, it appears that the elder’s temperament and demands as well as past relationship with the elder weights on the level of burden the caregiver experiences. In my life, the verbal abuse of the elder, along with the demands and isolation created for caring for a person who is so unruly we can not have friends over or take her out have created a huge amount of burden.

Furthermore caregivers who are faced with providing care for a person who is cognitively or mentally impaired and exhibit disruptive or unpredictable behaviors are likely to experience depression, anger, increased anxiety, hostility, fatigue, grief, and social relationship strain. During my research I found the caregivers who experience low or irritable mood, feelings of worthlessness, self-reproach or excessive guilt, attempted suicide or thoughts of such, motor retardation, agitation, disturbed sleep, fatigue, loss of energy, lost of interest in activities usually enjoyed, change in appetite, and problems concentrating or thinking for more than two weeks may be experiencing the depression end of caregiver burden (Doval Mezey & Berkman, 2001).

Based on this information, I was able to pinpoint several symptoms I am experiencing. (Suicidal thoughts are attempts are not ones I have experienced). Thus I decided to seek answers to determine the level of depression I may be experiencing. I used the Center for Epidemiological Studies Depression Scale and after answering the questions honestly I am disturbed by the findings.  Anything over a score of 21 indicates the possibility of major depression. I scored a 48. I took two other similar tests on the same site and got similar results. I will be contacting my doctor tomorrow regarding this disturbing finding. (Center for Epidemiologic Studies, n.d.). Next I found an assessment to determine if I was suffering from caregiver burnout, and found that I am experiencing a high level of distress and should see a doctor. This test can be found here (American Medical Association, n.d.).

A link to the tests is provided with the references for anyone else wishing to take the preliminary test. I believe it is important to note that test is preliminary and should not be use in place of a proper diagnosis by a trained professional.

So what are some factors that contribute to burn out? Unrealisitc expectations are one factor. This is where the caregiver believes their caretaking will have a positive effect on the health and happiness of the person they are providing care for. Lack of control is another. This is when the caregiver feels they lack the finances, resources and skills to provide care. Unreasonable demands are another. Many caregivers put unreasonable demands upon themselves and the elder can contribute to the demands (WebMD, n.d.). This describes what I am going through perfectly. I believe I may be lucky in discovering this information because may caregivers do not realize they are suffering from burnout and will get to a point where they can not effectively function on a daily basis (WebMD).

With all this said, I wonder what the effects are of caregiver burden and burnout besides depression. Will it effect long term health and so forth. Research studies thankfully exist to answer these questions.

One study of 24 primary caregivers and 31 non-caregivers of similar age, education and gender but the similarities ended with that. Caregivers showed a significant increase in morbidity. Caregivers had higher incidences of illnesses, such as, high blood pressure and more acute health conditions. 69% of the differences between caregivers and non-caregivers were their total illness score. In other words caregivers had more illnesses and severe daily hassles associated with being a caregiver. Furthermore, caregivers reported more psycho-social problems, psychological distress, and inadequate social attachments. These results provide evidence that providing primary care increases the risk to the caregiver’s physical and psychological health. “Elevated blood pressure was a particularly salient feature for caregivers” (Willis & Gottlieb, n.d.).

Due to my mothers early signs of dementia, mental illness and narcissistic personality I wondered if this contributed to the problem. The burden of care giving for mentally ill people was first introduced in 1963 by Grad and Sainbury. Today’s medical community accept that care giving to a mentally ill person or one with dementia can be a “source of potent and chronic stress and can cause deleterious consequences for both the physical and mental health of caregivers” (Karlikaya et al., 2005).

Research shows that caregivers of demented patients are nearly twice as likely as caregivers of non-demented patients to have symptoms of depression. Also, the spouse or adult child who is the caregiver often has an emotional burden that makes the risks even higher (Karlikaya et al., 2005).

This information is very disturbing since I have felt for some time I was suffering some depression. Now, I wonder if I am suffering from burnout and as a result severe depression. As I mentioned earlier I am calling the doctor in the morning to discuss the possibility. While at the same time it angers me even more to know that effect this woman is having on my entire life with little or no thought on her part.  

References

American Medical Association (n.d.). Caregiver self-assessment tool. Retrieved Jan. 15, 2009, from http://www.ama-assn.org/ama/pub/category/5037.html

Center for Epidemiologic Studies  (n.d.). Welcome to the Center for Epidemiologic Studies Depression Scale (CES-D), A Screening Test for Depression. Retrieved Jan. 15, 2009, from http://counsellingresource.com/quizzes/cesd/index.html

Doval Mezey, M., & Berkman, B. J. (2001). The Encyclopedia of Elder Care: The Comprehensive Resource on Geriatric and Social Care. : Springer Publishing Company.

Karlikaya, G., Yukse, G., Varlibas, F., & Tireli, H. (2005). Caregiver Burden In Dementia:A Study In The Turkish Population. The Internet Journal of Neurology, Volume 4 Number 2, . Retrieved Jan. 15, 2009, from http://www.ispub.com/ostia/index.php?xmlFilePath=journals/ijn/vol4n2/dementia.xml

WebMD (n.d.). Recognizing Caregiver Burnout. Retrieved Jan. 15, 2009, from http://women.webmd.com/caregiver-recognizing-burnout

Willis, L., & Gottlieb, S. (n.d.). Caregiver Stress:  Causes and Treatment. Retrieved Jan. 15, 2008, from http://codi.buffalo.edu/graph_based/.aging/.conf/.stress.htm