BEING A QUADRIPLEGIC CREATES TREMENDOUS STRESS ON A PERSON

 June 17, 2021

I am getting very tire of having to fight so fiercely to achieve the things I need.  Let me explain why so you will understand better: for instance, the past two nights I slept only 4 hours in spite that I was in bed for 7 hours.  Since I am a quadriplegic, I have to be repositioned at least every 5 hours or the pressure points will give me wounds. My husband has been my sole caregiver, but just a few months ago, his cardiologist diagnosed him with Congestive Heart Failure. Also, my husband had stents placed in his Aorta vein four years ago.  So I came to the conclusion that we now need extra help and hired 2 caregivers.  One, from Monday thru Thursday, and the other one Friday & Saturday. Which means a lot of money!  This has me extremely upset because I don't know if I am going to have the money to pay for services like that for a long time.  

The stress of being a quadriplegic creates on the person, as well as on their loved ones,  tremendous anxiety.  

A VERY RUSHED SHOWER

 A  Home Health company agreed to temporarily send a lady to help me shower.

         "I will be at your house at 2 pm." She called saying.

She showed up at around 1:30 -which is within the window of time one can reasonably expect. But what was not reasonable is the hurry that the poor woman was acting with. And even worse, putting us on.

         "Mrs. Ross is the 7th person I have bathed today, and I still have two more to do. From here, I have to drive back to Tampa and I already have been to…" And she named cities that I don't even remember.

All I remember is the rush Dan and I experienced…I was trembling from head to toe, Dan was livid. 

We were pressed by her haste to the point that I told her to only wash the most important parts: head, underarms, private parts, and feet. We told her to just dry me from the waist up and put my shirt on because my husband has a hard time putting my shirt on but that he would dry my legs and put on my panties and pants.  40 minutes later she was gone.  

This episode has left me reflecting on a couple of things: 1. - I wonder if the help provided by a home health aid of that type is worth the stress it causes. 2. - How well rinsed a disabled person gets when bathed in such a hurry? Personally, I think leaving soap in some parts of the body could cause irritations.   

MY PRIMARY DOCTOR GETS A HOME HEALTH CARE COMPANY TO VISIT ME!

 

A home health care company representative called me to set an appointment to visit me for them to evaluate my situation. My husband explained to the representative (a lady) that due to our difficulties we were available only after noontime.  She said that she understood perfectly well and that she could be at our house the next day at 4:00 pm.

She was here as promised. After examining me she told us that I did not have any open wounds, that my skin was looking good. And she agreed to temporarily send a lady to help me shower. My husband and I were enchanted! FINALLY, HELP IS COMING OUR WAY!

BEING A QUADRIPLEGIC IS DIFFICULT

 

Being a quadriplegic is hard. Not only because it's tough not to be able to scratch where itches, but also in so many other instances. For example: Due to my impossibility of turning or even shifting my weight a little, I can no longer spend six hours in bed; I hardly make it to four hours before the pain in my hip becomes unbearable because lying for hours in the same position causes pressure points. Pressure points if left unattended turn into 'bedsores' (decubitus ulcer):https://www.healthline.com/health/pressure-ulcer). 

Bedsores easily become infected. A bedsore develops when blood supply to the skin is cut off for more than 2 to 3 hours. As the skin dies, the bedsore first starts as a red, painful area, which eventually turns purple. Left untreated, the skin can break open and the area become infected:https://www.hopkinsmedicine.org/health/conditions-and-diseases/bedsores

The same thing happens when I sit in my wheelchair.  After three hours, I feel as if someone is setting my ass on fire.  I told my doctor that I must be getting sores and asked him to check my butt for advice on what to do, what cream I could use to prevent that from happening. 

He told me that since I was not able to climb or be lifted to an examining bed, not even to stand up and have my pants pulled down, he could not examine me at his office but he could request the visit of a Home Health Service. Medicare covers that type of visit. I begged him to do it ASAP.

MY FOE DYSTROPHY HIT ME WITH A HUGE WAVE OF WEAKNESS

 

I have not written on my blog for near two months! The reason being that my foe dystrophy hit me with a huge wave of weakness, turning me into a quadriplegic!  I no longer have used of my arms; I can't lift them or even move them. When I get an itch on my head or in my face or anywhere else in my body, I have to ask my husband to scratch me. And let me tell you, that can be a frustrating experience for both him and me because it's so difficult for someone else to find the exact place where another person itches!

Luckily, I still can move my hands a little, so I am going to make the best use of them and write as many entries as I can.

AN UNFAIR CHALLENGE

 22 years ago, a perfect stranger approached me with a challenge of life or death.  At first, I did not pay attention and treated it like a hindrance. But, it would not go away. Finally, I gave in and asked: "Alright, I will consider accepting your challenge but first,  I need to know what is your purpose, what is your goal, and what is your name? "

"My name is Muscular Dystrophy," the stranger said. "My purpose is to weaken you in order to achieve my goal to destroy you." 

I lower my head and close my eyes to concentrate on what I was going to reply when I heard the ticking of a clock.  At the same time, MD was screaming: "OK the timer is set. On your line, get set, go!!!!!!!!!!"

"Wait a minute MD! This is not fair. Something is wrong, I had not yet accepted your challenge, I was just thinking about it." 

MD did not hear because it was already far ahead.

22 YEARS AFTER BEING DIAGNOSED WITH MUSCULAR DYSTROPHY

 To this date, I have been living with muscular dystrophy for over 22 years. 

The first 5 years, despite the difficulties I kept encountering, I thought my problem was not insurmountable. That appreciation of my situation, though, led me to make wrong decisions about my future. For example: When my husband and I discussed my 'retirement plan' we chose  I would not apply for disability benefits.  Fast-forwarding to today, I have to say that I would reconsider that decision.

 Muscular Dystrophy is unstoppable. Its goal is to destroy. Plus, is very expensive to maintain. MONEY, every single penny that you can get, will count. Being disabled is a luxury many can not afford. 

I THOUGHT I HAD FINALLY FOUND THE BEST MATTRESS. BUT NO, NOT BY FAR!

On February 19, 2020, I published an extensive post narrating my many attempts to find a mattress that would allow me, and consequently, my caregiver (who is my husband), a decent night's sleep. At that time, I thought I had finally found the "magic mattress", but time told me "No, not exactly!"

It happens, that the Invacare microAIR MA90Z Lateral Rotation Low Air Loss Mattress System

for which I paid over three thousand dollars did not perform well. It gave me the sensation of being ditch in a  hole; which is a pretty bad sensation.

After trying to set the mattress air pump in every possible configuration to avoid the problem, my husband decided to call the company from which we bought the mattress. They put my husband in contact with the manufacturer. The manufacturer sent us a new pump. The first weeks it seems as if we had succeeded in solving the problem; the mattress inflated enough to not ditch me into a hole. Unfortunately, though, gradually it has gone back to doing its old bad habit: Sinking me!  

My husband thinks I should buy another lateral movement mattress system, but I am coming to the conclusion that there is no such system that provides significant help to the patient.

This is a true pity because now I am scared when it's time to go to sleep. As a person who has suffered from Muscular Dystrophy for over 22 years, I am at the point of not being able to move. I can't even move the tiniest bit to turn to my side. This, of course, inhibits me to change my position. This situation is exasperating and also very dangerous because 'staying put' causes pressure points. The pressure points, if left unattended for periods of time, (meaning not changing the patient's position) originate the terrible sores so feared by patients and caregivers.  The sores are a result of the loss of blood flow due to lack of circulation which causes the skin to die and decay. The sores gotten in bed are known as pressure ulcers, decubitus ulcers, or simply 'bedsores'.

Given the above, anyone who experiences difficulty in changing positions should seek help to do so as soon as possible in order to prevent further damage. In a future post, I promise to talk more about the hideous sores. Right now,  I would be very grateful to those persons immobilized due to muscular dystrophy or any other sickness, that share with me and my readers their experience regarding their search for a good mattress on which to get a good night's sleep.