VULNERABILITY TO BE ABUSED (EIGHT OF A SERIES)

Waiting...always having to wait

As much as I don't like to write about this, and as sad as it may sound, —as I mentioned in my previous post-https://www.blogger.com/blog/post/edit/4038844228930111664/7626586630965434636 "LOSS OF INDEPENDENCE (SEVENTH OF A SERIES)" —, it is true: Persons of any age who have lost their independence due to disability, be it mental or physical, are vulnerable to be exposed to abuses. Be it in institutionalized care settings or in their own home.

Of course, there are different ranges and types of abuses. Some, of them, are so horrific that they will make your hair stand on end; for example, being kicked or hit, or even worse, being sexually abused.

Others are not as terrible, but still bad enough to make the disabled person realize, that she/he has lost all possibility to fend for himself.

For example, let's say that the care provider acts as if she/he does not hear what the patient is saying or asking for. Or, does things differently than asked or instructed; or, takes time and delays doing what is requested. Or, simply ignores doing it. Any of those attitudes could create an imbalance of power between the care provider and the disabled person.

Based on my own situation, I can tell you that my experiences in dealing with caregivers have taught me that in truth, things are done the way the caregiver chooses. I may lay out my instructions all I want. . . And they will execute them to their convenience.

I have not suffered any horrible abuse, but I have learned to wait, accept, adjust, take deep breaths and hold my temper, smile, and thank their attention always no matter what. In other words, to be 'the patient'! Ah, and let's not forget: be always ready to pay. Pay as much as they demand because that is the only way a disabled person can get some help. 

Living with this reality harms the disabled person's dignity and increases the feeling of helplessness, making the dependent person feel end.       

SOME SUFFERINGS COMMON TO THE FACT OF BEING NON MOBILE (Seventh of a series)

Physical Disability and Depression Journals.plos.org

LOSS OF INDEPENDENCE

One of the skills most appreciated by an adult person is the fact of being independent.

The definition of 'independent' as found in Dictionary.com is:

"Not subject or contingent upon something else for existence, operation, etc."

In other words: Freedom to come and go as needed!  Sovereignty to provide is it for oneself, or for the family.  Autonomy to choose the schedule, work, own way, and the how, when, and where of living. All of which are psychological factors that empower the human spirit by nurturing the sentiments of our self-confidence and self-esteem.

Debilitating illnesses such as #Muscular Dystrophy — even in its mildest forms as #Miyoshi myopathy which is the one that I have been suffering from since more than 20 years ago, — are well known to cause a significant decline in the ability of an individual to perform daily routine tasks as simple and essentials as, personal hygiene, eating, or even bowel movement or sphincter control. Thus causing at the lapse of some years that a person who once was the breadwinner of the family, the strong one, the active, the responsible, is now a frail 'disabled dependent'.

A very hard pill to swallow as you can understand by the definition of 'dependent' found on Dictionary.com is:

"Subordinated, appurtenance, an annex, not an integral part."

Especially when you apply those terms in reference to a disabled person, you could say that Subordinated means: A person that requires the help of another person to be able to change position, get cleansed, or be fed. In other words: to live.

Like a child! 

With the difference —the enormous difference! — that a dependent baby is lovable and cute and small and easy to maneuver while the adult is heavy, stiff, cranky, and not so lovable and easy to manage. 

This change of status imposed upon a sick but still conscious adult by the everyday increasing inability to perform basic living activities causes, not a too long time after, the loss of any social role, and, thus also, the loss of identity and respect as a person. 

SOME SUFFERINGS COMMON TO THE FACT OF BEING NON MOBILE (Sixth of a series)

 SOCIAL ISOLATION 

Charles Dickens referred to "isolation" as a "slow and daily manipulation by the brains' mysteries" which, he concluded, "is far more destructive than any torture to the body." Many studies confirm Dickens' observation attesting that the psychological changes derived from isolation are many and very damaging ranging from depression to psychosis.

I can righteously say that I was on top of the world by the time I reached the age of 50.  My job as Office Manager of a successful Health Managed Care Company provided me the money to live comfortably.  My second job as a social events reporter in the most prominent Hispanic newspaper circulating in Miami added the glamour. Everybody appreciated seeing their pictures and events published in my column. Everybody wanted to be my friend…everybody wanted me at their parties. I had become a social butterfly!  

I did not change my life pace the first years after I was diagnosed with #Miyoshi myopathy.   Rather overwhelmed with gratitude to God for the good luck that allowed me —not only to enjoy so many years of normal living but also, to have gotten "one of the mildest forms of muscular dystrophy", (according to the doctor that explained to my husband and me what Miyoshi myopathy was), I kept working as usual. 

Despite its mildness, the Miyoshi myopathy had me walking with a rollator after only two years after being diagnosed with it.  After five years, I had to stop driving. Which consequently made me stop working outside my home. In twelve years, I could not clean my home and by the thirteenth year, I had to stop cooking. Today, 25 years after being diagnosed with the "mild'  Miyoshi myopathy, I can barely move the tip of my hands. I am now a quadriplegic completely dependent on somebody else to help me live. And yes, you guessed it, I am also totally ISOLATED!   

I mentioned the above data so anyone reading this post will learn that I am not a weak whining person. On the contrary, I picture myself as a courageous individual. Courageous in the sense that my initial purpose has been to be strong, to inspire courage, and of course that when anyone expects to do that, it has to start by setting the example.  I have tried. I tried for many years. But now I must admit that I am exhausted.    

SOME SUFFERINGS COMMON TO THE FACT OF BEING NON MOBILE (Fifth of a series)

 The FEARFUL condition of IMPACTION! 

Over the past year, I have suffered some episodes of a near fecal impaction which I do not wish on anyone because it is not only unpleasantly scary but also, downright embarrassing if the help of a caregiver has to be required.

Getting impacted as I have experienced it,  means not being able to push out the feces, accumulated at the end of the intestines, which can become dry and hard making it very difficult for the colon to expel from the body using its normal contraction process.

People like me that have lost the ability to walk and cannot do exercises  —not even move around— are easy subjects of suffering constipation which in turn, can easily become 'impaction.' From my personal experience I can tell you that I can notice how the process starts developing; I can detect where in my intestine the mass is building up. Luckily, these experiences also have given me some knowledge in the matter and now I know some steps that help me achieve a somewhat decent bowel movement. And I will share them with you:

* I try to observe a regular schedule of going to the bathroom

* I am conscientious to drink the recommended quota of liquids

* I pay attention to eating enough nutrients

* I pay attention to eating enough fiber

* I pay close attention to the effects the medication I take has on my bowel function.

* Even though I am a quadriplegic I force myself to do some abdominal intestine exercises which are as follows: pull the stomach in as much as possible —count at loud from 1 to 8 as slowly as you can— let your stomach go. Repeat 3 consecutive times 3 times a day.

Everybody is different, so is up to each one of us to find out what our bodies need. Listen to your body. Some bodies do not need to go #2 every day, others do. Some bodies need different nutrients and vitamins. But if we pay attention to ourselves we will be able to decipher our needs.

Now, an important device that I recommend to every handicapped person is an electric bidet seat. It not only helps to keep the person clean but also provides an option that allows to irrigate the anal passage and stimulate the colon.

 

SOME SUFFERINGS COMMON TO THE FACT OF BEING NON MOBILE (Fourth of a series)

 The ever-present fears of pressure ulcers! 

                                                     Credit: Science Photo Library

Wheelchair ulcers, bed ulcers, and other types of ulcers commonly called 'decubitus' ulcers are produced by excessive pressure on the skin or its tissues. This pressure constrains the blood vessels that are in charge of carrying blood to the cells, causing the cells to starve and consequently die. Once the cell dies a lesion is formed. Technically, this condition is called 'ischemia'. A condition, that should be highly feared by patients and their caregivers.

Unfortunately, this problem is frequent in patients that suffer from lack of mobility or even rigidity. Particularly, persons that cannot change position by themselves or those who have lost sensibility or the ability to complain.

Although lack of mobility is usually the main reason patients get sores, there are some other reasons such as:

* Not being careful to change position; it is recommended a person be changed position every 3 or 4 hours.

* Not eating an adequate diet. If the tissues do not get the necessary nutrition, they become fragile.

* Incontinence; it increments the risk of getting sores because it adds to the humidity factor.

* Lack of hygiene. Sweat, remainders of urine or excrement, easily burn the skin, especially the sensitive skin of the disabled or old people.

It is VERY important to understand the need to take steps to prevent these problems. Following is a link from the National Library of Medicine that I highly recommend reading:https://medlineplus.gov/ency/patientinstructions/000147.htm

  

                                      

SOME SUFFERINGS COMMON TO THE FACT OF BEING NON MOBILE (Third of a series) NERVE ILLNESS THAT LASTS A LONG TIME

 So, ever since I was diagnosed with muscular dystrophy over 20 years ago, I've experienced changes in my body, which I believe are caused by the atrophy and weakness of my muscles.

For example: in April 2018, I felt a shooting and searing sensation in my calves. The sensation was unfamiliar to me, and while it was irritating, I assumed it would quickly pass.

However, I did not improve as time went by. On the contrary, my primary care physician diagnosed me with 'neuropathy,' for which he prescribed Gabapentin. Neuropathy is a nerve damage disorder induced by a variety of factors; one of which is muscular dystrophy.

To this date, three and a half years later. That burning pain I first thought to be temporary, has accompanied me every single moment. My skin has become extremely sensitive to the point, that sometimes, I am sure parts of my skin are about to tear up. Especially the parts that touch a surface like my buttocks when I have been sitting for over two or more hours or when I have been in bed too long without being turned to change position. 

But when my caregiver or loved one checks my skin, they can not see any skin damage. "Must be the nerves" they say.

I really don't know what to do, but the pain I feel is agonizing.

SOME SUFFERINGS COMMON TO THE FACT OF BEING NON MOBILE - (Second of a series)

Second of a series:

It is difficult to obtain adequate medical attention when you are an invalid.

 

Over five years ago, I lost my ability to stand up. Since then, I have to be raised using an electrical motor or a lift. Since then, I don't get physically examined when I go to the doctor because nobody in their office can help me get up to the examination table. All I get to do is just talk with him or her about my ailments.

The last time I visited my primary doctor, I was asking him to give me the name of barrier cream to help me prevent the development of a chair sore that I was sure had started to break in my derrière. He immediately offered to examine me and asked me to stand up and climb to the examining table. When he realized I was not able to do it, he asked my husband to help me, but my husband is also an old person and can not lift me anymore. For that same reason, I stopped going to the dentist, to the urologist, to the gynecologist, and to many other doctors. No doctor's office, that I know of, has the equipment to lift patients from a wheelchair to the examining table.

To give you a sense of what it's like to lose your capacity to stand and walk on your own, I'll tell you that I haven't been able to weigh in a doctor's office in over eight years. I have no idea how much I weigh.

SOME SUFFERINGS COMMON TO THE FACT OF BEING NON MOBILE - (First of a series)

 

It is a fact: to work properly, a human body needs to be able to move, otherwise, it rapidly deteriorates. 

First post of a series:

ANGST

Severe pain in my left heel jolted me up one night. To avoid disturbing my husband's sleep until it was time to turn me, I decided to shift the position of my foot first. I tried again and again, but I couldn't since I can't move my legs or even lift my feet owing to muscular dystrophy.

It was aggravating to be awake in the middle of the night with agony and unable to move my feet, legs, or arms, so I prayed to my Guardian Angel for help. My invisible angel assisted me in some way because my other angel, my flesh and bone husband, awoke and assisted me in changing the position of my foot.