I have heard so many (often conflicting) comments and observations on care-giving etiquette that I decided to Google "Do's and don'ts of Quadriplegic Care Giving." Google informed me that I had more than 550 000 sites to work through. As I picked through the more promising titles I came accross one gem but the rest were mostly adverts for care-giving agencies or interactive support groups. So I decided to phone Bernice Nel, care-giver extraordinaire, who has been caring for her husband, Deon, for donkey's years.

As readers of Rolling Inspiration will know, Deon has Motor Neuron Disease, is a total quadriplegic and has been on a ventilator for almost four years now. Bernice has been caring for him with a passion that declares war on anything and anyone that stands between Deon and optimal care for his condition.

Deon recently received equipment (RI Nov/Dec 2010) that allows him to type messages by means of eye movement so I asked the both of them to give me some insights. The  full text is on the RI website but what struck me most was a comment from Deon: "Carers must not just hear you - theymust listen to what you tell them."

The essence of this plea is respect. All the other do's and don'ts are variations on the theme of respect - not just showing respect but truly respecting the person. Not just respecting the needs born from the disability but respecting the life that is living within the confines of the disability. Respecting the God-created soul that resides within the physically debilitated body. A soul that yearns for communication, for attention, for interaction. To be heard for who you are and not just to exist in a world where people talk about you infront of you as if you are some inert object.

At first I thought that the plea was for love but love begets passion and passion often distorts perspective and skews reality - the best intentions of love are often not in the best interest of the receiver. Respect on the other hand disciplines me (as the care-giver) to serve the explicit needs of the care-receiver and it also disciplines me to discard those dangerous wants that love may sway me to allow.

So my message to caring hearts is Let's listen to what Deon is saying to us; respect is the cornerstone of interactive love and as care-givers our firstduty is to interact. With respect.

Deon's Road Travelled with Motor Neuron Disease

As told to George Louw by Bernice, Deon's loving wife and principle caregiver.

Deon had no symptoms of impending paralysis priorto 24 Nov 2004. However, on that day just over seven years ago, Deon had a Dental appointment where eight of his teeth were extracted in the space oftwenty minutes. Were turned to our (Locksmith) shop immediately after this traumatic event. While at the shop Deon was suddenly overcome with a difficulty to swallow and an inability to talk, although he still had a voice. At that stage he could still drive and walk and otherwise function relatively normally.

This situation carried on for approximately two years until eventually he was diagnosed with Motor Neuron Disease in 2006, although the Doctors stated that the symptoms he experienced over the previous two years were not typical of Motor Neuron Disease onset (because Deon's symptoms did not get worse where as MND usually results in progressive deterioration). How this could happen after twenty minutes in a Dental chaironly God knows!!

In December 2007 Deon choked on and aspirated his food. It was found that his swallowing mechanism had become completely paralysed and he could no longer eat normally. This required the insertion of a peg tube through the wall of his abdomen into his stomach; in order to feed him. This however was not a success and Deon's weight fell from 57 kg to 44.6kg by the end of March 2008. He was admitted to hospital for dehydration and reflux. This admission was very traumatic and included severe respiratory distress with his blood oxygen levels dropping to almost 50% of normal. The initial diagnosis of this event was that Deon was suffering an anxiety attack but after an intervention by a Specialist he was rushed to ICU in cardiac arrest. After he was resuscitated Deon was placed on a ventilator and remained in ICU for a full four months. He has never regained the ability to breathe on his own and has to be ventilated via a tube in his wind pipe following a Tracheotomy done on the 4th of April 2008. He was discharged home onthe 25th of July 2008 as a complete quadriplegic and totally incapable of any movement. From that day on I have home nursed Deon and supervised nurses from home-nursing agencies (who more often than not do not have the skills to manage what effectively is an intensive care patient).

For six years Deon was unable to talk and could only communicate by eye movement, using an alphabet board. The biggest challenge was to train the home nurses to communicate with Deon and to be ever-vigilant to his needs, especially to be able to recognise distress signals immediately and sort out the problem before things became catastrophic.

On the 6th of December 2010 we were fortunate to receive a gift of a computer that is specifically designed to helppeople in Deon's position to communicate. It was really difficult at first toget him to use it; he kept wanting to use his alphabet board! I had to use tough love and be a little forceful but now he can't do without it.

He reminds me to put it in place for him and even took it to hospital this last time. It has helped us all! Deon is a real chatter box now and gets really vocal some days, he can even send a missed call to me on a cell number dedicated specially to him as an alarm for when I am out of theroom. Then I know he needs me back in the room urgently.He SMSs back andforth with people whose company he especially enjoys. He SMSs our son late atnight if he is late in coming home to check he is okay!

He loves e-mails with lots of picture attachments: We put virtual tours on for him after every trip the kids do; like Cradle Man. It kind-of feels like we both had been there as well; to the Kruger National Park etc. I have also gone onto Facebook and communicate with other quadriplegics,l ike Martin Brown who is quadriplegic but, despite this, won the SANLAM Business Man of the Year for 2011 as well as the INSETA Business Award on the 3rdof December. His mom has recently become my house friend as we live close to each other. We are sharing ideas at the moment - really helps to hear other's ideas.

Deon chats on Quick Talk when he needs us to do things or wants me to look for things. He recently directed me into the garage to find something that he put away seven years ago. I went straight to it from his directions; what a memory he has! Another example was when the swimmingpool was muddy from rain and our son, Jason, and I had no clue how to correct it. Deon instructed me on his computer and the pool is now almost clear again. He also tells us what we are doing wrong and what we should do to move him more easily without causing him discomfort. At night the alarm on it wakes me if he needs me. I do not know what we did without it. Six years of silence was broken and he is no longer locked in his own body.

Bernice and Deon's son, Nathaniel, recently got married and Bernice - being Bernice - arranged for Deon to attendt he wedding. Below is a short email that I received from Bernice after the wedding. I left it unedited and unabridged because it says it all:

Dear George,

Sorrry for delay but I am exhausted, the Wedding from like a Dream!

Netcare911 dedicated an ambulance to us for the evening and we arrived at 3pm got home at 12 pm Deon enjoyed every minute did not sleep a wink.

ICUSr Annelies dedicated herself to us for the whole day and evening she helped make this possible, she assisted me to dress and ready Deon for theWedding. Without her help over the year which was entirely dedicated by her to him without charge his health would not have been as good as it has she assists me in person and telephonically when necessary. Posted a few pics for you from wedding.

God Bless from Us both

Care-giving:Views from both sides

Please note how Deon and Bernice's comments overlap. For me there are two messages in this: firstly, the two of them are totally in tune with one another and secondly, particularly Deon speaks for all those who are paralysed and unable to communicate but who suffer the same irritations, the same in-considerations and the same injustices that he describes.

G.L.

Bernice:

My view from a givers point of view with regards to what a Quadriplegic requires from acarer are as follows :-

1. Carer needs to be able to fully understand the condition of the patient to be able to care and fulfil all the patient's needs and requirements.

2. Carer must be able to understand the language of the patient, must be able to follow instructions and to be ableto do this. Needs to not only hear what is said to them but to listen to what is being said and follow the instruction out as instructed.

3. Carer must be dedicated and committed to his or her work as a carer and not just become a carer to earn an income. This is more than a job; it is a life in your hands and this patient's life is in your hands. They are fully dependent upon you.

4. Carers must make sure they get enough rest while off duty and not report for duty exhausted from lack of sleep because they just simply do not care and have no respect for the patient and sit and sleep on duty regardless of the patient's condition.

5. Carer should have knowledge of the range of vital signs and the range of that particular patient and know what is normal and what is out of range and a danger to the patient concerned as this can be life saving. Carer after all is the one who needs to know when to inform whoever is in charge to call in a doctor or ambulance and rush the patient to hospital if the need arises.

6. Carer must have good knowledge of correct input liquids and output urine etc for particular patient and know when the patient is suffering from water retention and treat according to instructions or call for help if situation does not improve. Must also have good knowledge of concentrated urine and signs of urinary infection or signs of kidney stones.

7. Carer must have good knowledge of bowel movement and know that particular patient's bowel movement pattern, when to induce and when to assist or when to report major constipation or looses tools which could be a blockage, impacted colon and a threat to the patient's life.

8. Carer must know how to accurately read a urinal - not only the 100, 200 mls - they need to be able to assess the amount in-between. I have found that most cannot assess in these instances. And they need to record the output accurately - not throw it away and forget to record - which is very common.

9. Carer must have a good knowledge of the drugs used for the particular patient - what they are for, what the side effects are, what the interval is in-between administering these drugs - so they do not overdose the patient and, if the meds are not given at normal time, when next they should administer. If they simply administer as normal they can cause BP to crash etc.

10. Carers need to know how to identify warning signs of the start of bed sores. They must do pressure care when the patient is awake or asleep as these appear at any time. A favourite excuse is that the patient was fast asleep. My answer is: bed sores appear at any time of the day or night - they do not care if the patient is asleep.

11. Vitally important is that a carer must not attend to the patient if they feel sickness coming on in themself - they can put the patient's life in danger. A common cold in a carer can be a death sentence to a patient.

12. Carers should be shown how to do stretches and exercises of the legs and arms and they must do as instructed to do - not be shown and just sit and act as a security guard - this is of no help to the patient. Movement is vitally important for the patient to stay healthy.

13. Carers must wash and spray their hands regularly and not scratch their hair, pants, under-arms, feet, noses, ears and mouths and then touch the patient without washing and spraying hands. This is very common amongst them.

14. Carers should be skilled in:

  • moving a patient to the wheelchair and back,
  • sitting their patient on the bedside correctly and safely,
  • turning their patient safely,
  • cleaning a bowel action correctly and hygienically without causing patient discomfort,
  • correctly placing a linen saver (sothey do not cause bed sores) and a urinal and wipe after to avoid fungus.

15. Do not leave your patient unattended at any time.

16. Carer needs to know the patient'sinterests in order to plan a day as the patient needs to have time to rest but also time to relax and enjoy whatever. TV, music, video, DVDs, visitors, a bit of outdoors etc; the brain must be kept active.

17. Carer must know that a false alarm to a doctor is better than no alarm. If in doubt contact a professional; this could save a life.

18. A Quadriplegic needs carers who are dedicated and trained and who care for them on a permanent basis; no chopping and changing. They need skilled persons in order for them to rehabilitate to as close to a normal life as possible.

19. Carers must be workable, be able to follow instruction, reliable and trustworthy.

Deon:

View from the receiver' point of view:-

1. Carer must be clean on themselves at all times, know to wash hands, not scratch in noses, ears and mouth and pants in front of the patient and chew bubble gum with mouths open and make noise in your ears.

2. Carer needs to stay awake on day and night duty to watch over you while you relax and sleep to assess you and call for help if the need arises, poweroutages etc, patient should not have to lie awake and watch over the nurse while she sleeps and have to try to waken those asleep in an emergency because of this.

3. Carers need to understand your language in order to be able to care for you.

4. Carers must not leave the patient unattended at any time.

5. Carers need to know the drugs they administer and how and when to administer or not to administer.

6. Carers need to be trained and skilled at moving patient to and from the bed and how to sit them without endangering the patient's life.

7. Carers need to accurately record the urine output, how to read and assess the quantities in the urinal.

8. Carers need to know when to induce a bowel motion and when not to.

9. Carers must do pressure care and leg and arm positioning even when you are asleep.

10. Carers must know how to position you comfortably in bed and how to sheet lift you correctly.

11. Carers need to be dedicated and trained to care for your needs and not chop and change once trained correctly as this sets the patient 10 steps backwards while a new carer is trained all over again.

12. Carers need to be trustworthy, honest, clean, and reliable and not cover up sickness as this can be lifethreatening to you.

13. Carers must not just hear you - they must listen to what you tell them.

14. Carers need to know your interests to be able to help plan your day, to give you rest time and entertainment time, be it TV, computer, music, DVDs etc. It must interest you - not them.

15. Pressure care is very importantas this is life threatening and can be avoided. Very important they do pressure care as them having knowledge of how to do it but not doing it is of no use to the patient.

16. Carer needs to be doing this work to help patients and not just to earn some money and sit and act like a security guard. We are dependent upon our carers to live a life as normal as possible.

ri-dot