The proverbial rock and a hard place, the no win situation, the damned if you do and damned if you don't circumstance, I know them well! My life is lived in these each day. Along with these, I live with, snide remarks, put downs, getting yelled at and a total lack of appreciation for the life I have dedicated to being a caregiver!

care·giver (ker' giv' er) noun : A person who takes care of someone requiring close attention, as a young child or an invalid.

The life of a caregiver is not an easy life! We are paid little and many of us put in many more hours than we are paid for. As in my case! Some of us are caregivers who do not get paid at all! I also fall into that category.

I am a caregiver for three persons. A 72 year old Male, Reece, a 70 year old Female, Beth and a 46 year old Female, Karen.

Reece, has COPD and hypoglycemia. He weighed in today at a whopping 99 ½ pounds at 5'3".

Chronic obstructive pulmonary disease (COPD) refers to chronic bronchitis and emphysema, a pair of two commonly co-existing diseases of the lungs in which the airways become narrowed. This leads to a limitation of the flow of air to and from the lungs causing shortness of breath. In contrast to asthma, the limitation of airflow is poorly reversible and usually gets progressively worse over time.

COPD is caused by noxious particles or gas, most commonly from tobacco smoking, which triggers an abnormal inflammatory response in the lung. The inflammatory response in the larger airways is known as chronic bronchitis, which is diagnosed clinically when people regularly cough up sputum. In the alveoli, the inflammatory response causes destruction of the tissues of the lung, a process known as emphysema. The natural course of COPD is characterized by occasional sudden worsening of symptoms called acute exacerbations, most of which are caused by infections or air pollution. http://en.wikipedia.org/wiki/COPD.

Hypoglycemia or hypoglycaemia is the medical term for a state produced by a lower than normal level of blood glucose. The term literally means "under-sweet blood" (Gr. hypo-, glykys, haima).

Hypoglycemia can produce a variety of symptoms and effects but the principal problems arise from an inadequate supply of glucose as fuel to the brain, resulting in impairment of function (neuroglycopenia). Effects can range from vaguely "feeling bad" to seizures, unconsciousness, and (rarely) permanent brain damage or death.
http://en.wikipedia.org/wiki/Hypoglycemia

Presently, Reece is using 24 hour oxygen therapy and several medications plus a food management program to help manage his diseases. He can walk approximately 20 feet on the average and then must sit and rest while he catches his breath again. It breaks my heart to see him struggle to catch his breath and see his body dwindle away.

It also shatters my heart when he is so hateful to me! I long for thicker skin, a heart much harder to breach, and a few words of appreciation from this man that I have given my own life up for over the past 15 years! Everything I do is around his schedule. His eating, sleeping, Doctor appointments, etc... The food I cook is based on what he likes, dislikes and what he can chew as he has no teeth! The rest of my family goes without their likes. He cannot lay down, so he sleeps in his Lazy Boy in my living room, and has taken the room over. He will not let anyone turn the television channel, and does not like anyone to talk. It means he can't hear the television! Having visitors is nearly impossible. He complains and can be down right rude!  I go no where unless I can find someone to care for him while I am gone. Which is extremely hard! He is moody and unkind! Except to Karen, he adores her!

You ask why don't I quit? Why do I take care of him. Reece is my father! I love him inspite of himself and feel it is my responsibility to take care of him. I can not say that he took care of me when I was a child because he didn't. He and my mother divorced when I was 9 years old. He disappeared when I was 11 years old. They reunited when I was 24 years old! So he was gone from my life for 13 very crucial years. When he returned, he did so with an attitude towards me that I have never understood. He has often said "I told your mother she should have aborted you." The same thing he says to me about my son's. I do not believe there is anything that is more cruel that you can tell your child! I asked him a few months ago why he hates me so much, and he refused to answer me! I simply walked away shaking my head, wondering what I ever did to cause him to treat me so terribly. I cook, clean, do his laundry, take him to the doctor, do all of his shopping, pay his bills, show him concern when he is not doing well but I can not make him happy and can never do anything to his approval.

Try as I may, I have come to the conclusion that I will never be good enough and I will never be appreciated by him. But, I can still do my best and take good care of him. I will always know that I fulfilled my responsibility to the man who fathered me. I love him with the same love that God loves me! I get paid for 2 hours a day by In Home Supportive Care Services to do a 24 hour a day job caring for my father. I feel it is right for me to collect the money since I cannot work outside the home while caring for his needs.

Beth has COPD as well. It is a constant fight to keep her from smoking. She is not quite as bad off as my father, Reece. But I want to keep it that way as long as possible! She sleeps at night with her oxygen on and during the day when she naps. She has Hyperglycemia (Insulin Dependent Diabetic), Alzheimers,OsteoArthritis, Fibromyalgia and has suffered several Strokes..

Hyperglycemia, hyperglycaemia, or high blood sugar is a condition in which an excessive amount of glucose circulates in the blood plasma. This is generally a blood glucose level of 10+ mmol/L (180 mg/dl), but symptoms may not start to become noticeable until later numbers such as 15-20+ mmol/L (270-360 mg/dl)or 15.2-32.6 mmol/L. However, chronic levels exceeding 125 mg/dl can produce organ damage.  http://en.wikipedia.org/wiki/Hyperglycemia

Alzheimer's disease (AD), also called Alzheimer disease, Senile Dementia of the Alzheimer Type (SDAT) or simply Alzheimer's, is the most common form of dementia. This incurable, degenerative, and terminal disease was first described by German psychiatrist and neuropathologist Alois Alzheimer in 1906 and was named after him. Generally, it is diagnosed in people over 65 years of age, although the less-prevalent early-onset Alzheimer's can occur much earlier. As of September 2009, this number is reported to be 35 million-plus worldwide. The prevalence of Alzheimer's is thought to reach approximately 107 million people by 2050.

Although the course of Alzheimer's disease is unique for every individual, there are many common symptoms. The earliest observable symptoms are often mistakenly thought to be 'age-related' concerns, or manifestations of stress. In the early stages, the most commonly recognised symptom is memory loss, such as difficulty in remembering recently learned facts. When a doctor or physician has been notified, and AD is suspected, the diagnosis is usually confirmed with behavioural assessments and cognitive tests, often followed by a brain scan if available. As the disease advances, symptoms include confusion, irritability and aggression, mood swings, language breakdown, long-term memory loss, and the general withdrawal of the sufferer as their senses decline. Gradually, bodily functions are lost, ultimately leading to death.Individual prognosis is difficult to assess, as the duration of the disease varies. AD develops for an indeterminate period of time before becoming fully apparent, and it can progress undiagnosed for years. The mean life expectancy following diagnosis is approximately seven years.Fewer than three percent of individuals live more than fourteen years after diagnosis.  http://en.wikipedia.org/wiki/Alzheimers


Osteoarthritis (OA, also known as degenerative arthritis, degenerative joint disease), is a group of diseases and mechanical abnormalities involving degradation of joints, including articular cartilage and the subchondral bone next to it. Clinical manifestations of OA may include joint pain, tenderness, stiffness, creaking, locking of joints, and sometimes local inflammation. In OA, a variety of potential forces—hereditary, developmental, metabolic, and mechanical—may initiate processes leading to loss of cartilage -- a strong protein matrix that lubricates and cushions the joints. As the body struggles to contain ongoing damage, immune and regrowth processes can accelerate damage. When bone surfaces become less well protected by cartilage, subchondral bone may be exposed and damaged, with regrowth leading to a proliferation of ivory-like, dense, reactive bone in central areas of cartilage loss, a process called eburnation The patient increasingly experiences pain upon weight bearing, including walking and standing. Due to decreased movement because of the pain, regional muscles may atrophy, and ligaments may become more lax.OA is the most common form of arthritis, and the leading cause of chronic disability in the United States. http://en.wikipedia.org/wiki/Osteoarthritis
 
Fibromyalgia (new lat., fibro-, fibrous tissue, Gk. myo-, muscle, Gk. algos-, pain, meaning muscle and connective tissue pain) is also referred to as FM or FMS. Fibromyalgia is characterized by chronic widespread pain and also allodynia, a heightened and painful response to pressure. Fibromyalgia symptoms are not restricted to pain, leading to the use of the alternative term fibromyalgia syndrome for the condition. Other core symptoms include debilitating fatigue, sleep disturbance, and joint stiffness. Some patients may also report difficulty with swallowing,bowel and bladder abnormalities, numbness and tingling , and cognitive dysfunction. Buskilla and Cohen state that "There are mounting data supporting comorbidity of fibromyalgia syndrome (FMS) and psychiatric conditions." and cite conditions such as anxiety, depression and Posttraumatic Stress Disorder. Not all people with Fibromyalgia experience all associated symptoms. http://en.wikipedia.org/wiki/Fibromyalgia

A Stroke (sometimes called an acute cerebrovascular attack) is the rapidly developing loss of brain function(s) due to disturbance in the blood supply to the brain. This can be due to ischemia (lack of glucose & oxygen supply caused by thrombosis or embolism or due to a hemorrhage. As a result, the affected area of the brain is unable to function, leading to inability to move one or more limbs on one side of the body, inability to understand or formulate speech, or inability to see one side of the visual field. . http://en.wikipedia.org/wiki/Stroke


You would think after not smoking for the past 6 months Beth would be done with it! No, I only wish! When I take her to town with me I have to keep a very close eye on her or she will do anything to get a cigarette including take a butt from an ashtray or pick one up from the ground! I refuse to let her buy a pack of cigarettes. Besides them being extremely bad for her health, she has lit a trash can on my porch on fire in the past, lit her clothing on fire and lit her hair on fire several times! It is a bad idea all together!

She has been known to get away from me in Wal-Mart (she uses the electric cart) and by the time I find her, she has already bought a pack of cigarettes. I find them, flush them and she becomes very angry. "I'm an adult I can smoke if I want!" I tell her the same thing every time. No, you can't, and you know I will find them and I will throw them away, so quit wasting money on them! She yells and cusses at me and I ignore it unless she makes a big public scene! In which case I tell her that if she does not stop, I will leave her with someone next time I have to come to town. She usually calms down some then! She can be quite childish now because of the Alzheimers. She can also be very stubborn.

The stubbornness gets her in real trouble! She knows she is not supposed to get up and walk anywhere without help because she falls.  She likes to sneak things she is not supposed to eat! This causes her blood glucose level to raise and she has fallen 9 times now in the last year! Thank God, literally, that she has not broken her hip yet! She has torn her shoulder but thankfully not bad enough for surgery. She has had numerous, bumps, bruises, sprains and skin tears. She simply will not listen. Not to me or the Doctor! She has no balance due to her Strokes. When I, my husband or Reece say anything to her about it her standard answer is, "Shut up!" She can be a real hand full!

Beth has another two other problems that are poignant! Her memory is pretty much gone. She will ask the same question over and over again all day! She has a calendar we write things on, but then she forgets to look at it! The second problem is she is hard of hearing and we are waiting for her hearing aid, which has been held up for six months now! Thanks to the government! She constantly asks, "What?" or "What did you say?" Even when you are not talking to her! My husband and I will be trying to have a conversation and he will finally just give up! She feels she should be party to all conversations and gets upset if you tell her, " Don't worry about it, we were not talking to you." Anyone who takes care of someone who asks the same question over and over again all day, and asks "What?" all day has to have a great deal of patience! I must admit, I fail in this category sometimes! I do my best but sometimes I get impatient. What can I say, I am human? I apologize if I get short with her! I remind myself that it is not her fault, it is the illness! God knows it could be me in her condition and someday may be! I would pray that someone would understand that it is a matter of affliction not willful irritation!

Why do I tie myself down to be the caregiver of such a difficult patient? Beth is my mother. She was there to care for me most of my childhood and all of my teen years. She sacrificed a lot to take care of my siblings and I. She was a single parent many times during my childhood. She never complained, she did what she had to do. She loved us, cared for us and made sure we knew we were valued. When she is thinking clearly, she still makes sure she tells me that she appreciates all I do for her. She shows her love and support. More than just my responsibility, I want to show her the love and compassion she has always shown me. I get paid by In Home Supportive Services for 2 hours a day to do a 24 hour a day job caring for my mother. I cannot work outside the home because I have to care for her, so I feel it is fair to collect the money!

Karen has Sarcoidosis and was shot in the temple with a 38* Caliber hand gun leaving her with brain damage and in constant pain.

Sarcoidosis is a systemic disease that can affect any organ. Common symptoms are vague, such as fatigue unchanged by sleep, lack of energy, weight loss, aches and pains, arthralgia, dry eyes, blurry vision, shortness of breath, a dry hacking cough or skin lesions. Sarcoidosis and cancer may mimic one another, making the distinction difficult The cutaneous symptoms vary, and range from rashes and noduli (small bumps) to erythema nodosum or lupus pernio. It is often asymptomatic.

The combination of erythema nodosum, bilateral hilar lymphadenopathy and arthralgia is called Löfgren syndrome. This syndrome has a relatively good prognosis.

Renal, liver (including portal hypertension), heart or brain involvement may cause further symptoms and altered functioning. Sarcoidosis affecting the brain or nerves is known as neurosarcoidosis.

Although cardiac involvement is present in 20% to 30% of patients with sarcoidosis, only about 5% patients with systemic sarcoidosis are symptomatic. The presentation of cardiac sarcoidosis can range from asymptomatic conduction abnormalities to fatal ventricular arrhythmia. Myocardial sarcoidosis can be a rare cause of sudden cardiac death.

Manifestations in the eye include uveitis, uveoparotitis, and retinal inflammation, which may result in loss of visual acuity or blindness.

Karen's heart, and lungs are affected by her Sarcoidosis right now.  She also has sleep problems and has recently gone through a major weight loss of 70 pounds in two months.

When Karen was shot, she was left with shrapnel in her brain and the back of her neck near her spine. It cannot be removed without causing further brain damage and possibly causing her to be a quadriplegic.  She is in constant pain with severe headaches and lives on major pain medications. She suffers from Post Traumatic Stress Disorder and shuts down when she has to go to a Doctors appointment or deal with any stresses. She becomes like a child including a change in voice, cries, closes her eyes and needs help to walk.


Posttraumatic stress disorder (commonly referred to by its acronym, PTSD) is a severe anxiety disorder that can develop after participation in or exposure to any event which results in psychological trauma.This event may involve the threat of death to oneself or to someone else, or to one's own or someone else's physical, sexual, or psychological integrity, overwhelming the individual's psychological defenses.

PTSD is a less frequent and more enduring consequence of psychological trauma than the more frequently seen acute stress response. PTSD has also been recognized in the past as railway spine, stress syndrome, shell shock, battle fatigue, traumatic war neurosis, or post-traumatic stress syndrome.

Diagnostic symptoms include re-experiencing original trauma(s), by means of flashbacks or nightmares; avoidance of stimuli associated with the trauma; and increased arousal, such as difficulty falling or staying asleep, anger, and hypervigilance. Formal diagnostic criteria (both DSM-IV and ICD-9) require that the symptoms last more than one month and cause significant impairment in social, occupational, or other important areas of functioning (e.g. problems with work and/or relationships).

Karen is a very loving, giving and beautiful person. We met her about five years now. My son brought her home from College. She was taking special education classes there. She had nowhere to live as the hotel she was living in burned down. He asked if she could stay for the weekend until other arrangements could be made. We said yes of course. By the end of the weekend we had fallen in love with her. Her personality is very unique! To make a long story short, we moved her in with us. We had an extra bedroom. We began to unravel the complex and unique person Karen is. The first time we met the child, was quite a learning experience. She came with no instructions! She shut down, rocked back and forth, cried and held onto me tight. I became her mother. She calls my husband and I Mom and Dad, even though we are only one and two years older than she is. We have learned to think of her as our daughter. She looks like an adult, but she is much more, a child. Karen always has supportive, loving things to say to me. She lifts my spirits when I am having a bad day!

I take care of Karen because she needs a family to care for her. She needs people who will not take advantage of her. People who understand that she is a child in the body of an adult. We love her like she is our daughter. She is simply a part of our family now. No one pays, me to be her caregiver, she pays no rent. She pays her cell phone bill and helps with groceries. I would ask the same of my other children who have limited incomes. She is on Disability.

Being a caregiver is not an easy job, but it can be very rewarding. If you love the people that you are caring for and you want the best for them, then you have the opportunity to provide that for them. Even on the worst day, when I have been drug through the mud by my father. I can sit back and know that I did my very vest and I have kept them at home where I know that they are clean, well fed, watched, given everything they need and most of what they want. That makes me able to say, it is all worth it in the end!