Peter Brennan ‘s story.
My name is Peter. I am 60 years old. My main claim to fame is that I don’t have any grey hair. I haven’t a clue why my hair belies my age. The ageing process has certainly not left the rest of me alone. Our friends still continue to ask who tends my hair colour. I am a quadriplegic. I incurred my injury over three years ago. I spent just over a year in hospital and at rehab. I have been at home more than two years. I live at Prospect with my wife, Dianne. Our daughter, Sally, who is a teacher, also lives at home together with her dog named Tyler . We have lived at the same address for almost 35 years. To say a spinal injury hugely affects yourself and everybody within your sphere would be a totally massive understatement. In the following paragraphs I will try to briefly describe what has happened to my family and myself over the last three years.
Our home required major alterations for my special needs. Ramps were built at the front and rear of the house. The master bedroom and bathroom were both remodeled. An additional shower and toilet had to be added. Doorways and hallways were widened to allow wheelchair access and furniture was replaced or rearranged. Our bank account was also emptied. Our beautiful wool shag pile carpet was replaced with a more wheelchair friendly substitute. Our romantic queen sized double bed was also replaced with separate his and her units. My bed required special features to allow my carers safe and easy access. Two of the special features on my bed are rails which run lengthways on either side. They are purpose designed to keep me in bed but they also prevent my wife from even kissing me goodnight with nothing other than a goodnight peck. Our bedroom now does not appear the slightest bit romantic and looks like a hospital ward. But it is still home and so good to be here. As I have already said I have been home for over two years now. I still get a warm inner glow when I recollect finally returning to our home and my family after thirteen months in hospital.
Dianne and I dearly love Tyler the dog who is very protective and loves to accompany me when I go out. The dog has fully tested my affection recently by running up a veterinary account of over three and a half thousand dollars and the meter is still running. The wonder dog loves to chew on plastic toys. One of these playthings looked so appetizing he devoured it. Unfortunately, he was unable to process the offending toy naturally and it had to be removed surgically. The vet has informed us that both dog and toy are doing well. He has also thanked us for providing the finance to put his kids through school.
Our daughter, Sally, who is 23, was recently touring overseas but surprised us by returning home unannounced. Sally had been away for about eight months. She just arrived back home one morning unannounced. Wow!!. What a huge surprise. Kids sure know the quickest way to a parent’s heart. My wife, Dianne, was about to have an operation to replace a damaged shoulder. Sally wanted to care for me and support my wife. Our daughter must have had a premonition that things would not go smoothly as my wife picked up the staph hospital bug (MRSA). Although the shoulder surgery was successful, the staph infection made her extremely ill. Dianne was in the intensive care unit and we were all very worried that she would not make it. Fortunately, Dianne is a fighter and the staph infection didn’t have a chance. Dianne is now home and on the mend. Sally returned to her overseas travels. England , Spain , Germany , Italy . How mundane and boring after the beautiful western Sydney suburb of Prospect.
I mentioned earlier that I incurred my spinal injury about three years ago. I fell from a ladder. I know dear reader. Why was an idiot fast approaching 60 years of age climbing a ladder? Especially when it was wet? I now know, not a smart thing to do. Well, this is how it happened. I was cleaning leaves out of our guttering. It was starting to sprinkle. I was in a hurry. I reached too far to one side. Ooops! Too late. Although the fall was less than two metres, it was enough to make me a quadriplegic. As soon as I fell I knew my body had suffered major damage. My head and shoulder were jammed against the ground in a most unusual position. My feet were pointing skywards as I was jammed between the side of our home and a shrub. I couldn’t feel a thing. An interesting aside before I continue with the story. Tyler the Wonder Dog, who I have previously mentioned, always assisted with my outside chores. He was a first-hand witness to my demise. Since that fateful day, he immediately barks out a canine warning to anyone about to climb a ladder. While barking, the dog positions himself between the ladder and prospective climber trying to protect them from impending peril. After that little aside back to the story. Chris, a neighbour, saw my plight. He immediately came to my assistance. Chris is a retired police officer and fortunately for me, had some experience in trauma situations. He started to make the emergency phone calls.
Paramedics and ambulances appeared from nowhere. After being stabilised, I was transported by ambulance to Westmead Hospital for assessment of my spinal injury. I was then transported by helicopter to a Sydney hospital with a specialist spinal unit. I still vividly remember overhearing a phone call by a Westmead resident medical officer pleading with specialist spinal unit hospitals in Sydney to accept me. Both the Prince of Wales and Royal North Shore Hospital refused. Neither hospital had a bed available in their specialist spinal unit. Westmead Hospital staff decided that I urgently required specialist treatment for my injured spine. Transportation by ambulance in the afternoon peak hour was not a viable option. The only way to get specialist spinal treatment was to load me into a helicopter and deliver me to the nearest spinal unit. The theory here is that if I get unloaded at the spinal unit’s front door (or in my case helipad) they will have to accept me (a little like an unwanted newborn baby). As I was being loaded into some almost coffin-like transportation device at Westmead Hospital it was explained to me that this is apparently the required protocol. The receiving hospital must accept me for treatment. I was fully alert to all that was occurring. I was terrified. Did I need an operation on my injured spine? Rejection by both spinal hospitals made me feel totally unwanted. Does this happen to everyone? Why doesn’t anyone want to treat me?? Don’t we have the best spinal units in the world??? I am sure I have heard our politicians boasting of such facilities. Is it possible that such facilities are like a mirage ? Do they disappear into thin air when you need to use them? I incurred my spinal injury over three years ago. Current news reports indicate that our current health system has not improved. The hospital system was run down then and is still run down now. It only functions because of totally dedicated staff. It is no wonder that the hospital system did not have a bed available at my time of need.
My level of injury is C4 to C6 and rated incomplete. I breathe without assistance although I may need the assistance of a nebuliser from time to time. This is especially the case whenever I get any chest infection.
Fortunately, I survived all the winter viruses this season. I am totally convinced that influenza and pneumonia vaccinations in autumn were the reason. Both injections are an absolute must for people, like me, with low resistance to bronchial inflection and viruses. I was exposed to carers, physiotherapists, doctors, dentists, family, friends and relatives who were afflicted with winter viruses and associated ailments. I guess I was even exposed to the equine influenza virus which halted racing for over six months in much of Australia . I remained healthy all winter. Unfortunately a young Quad mate of mine who lived a few blocks away didn’t survive this winter. I hope he is now at peace. Vale Ray.
A few thoughts for fellow travellers. It is hard to understand why some people prefer to suffer the effects of winter viruses. This is especially so when employers offer to pay for vaccinations against the flu. A touch of the flu would never be used as an excuse for a sickie? Never. I visit my GP often. I have noted that the waiting room is always overflowing on Monday and Friday. Surely the flu is not being used to support the great Aussie tradition of the long weekend. Never ever. My never-ending pharmaceutical costs allow me to purchase most medical scripts via the Pharmaceutical Benefits Scheme (PBS) at around five dollars each. This is after purchasing prescribed medicines at full cost until qualifying for the PBS. The $10 outlaid for the influenza and bronchitis injections was money well spent. Certainly my pharmaceutical needs are the reason drug companies feature as good investments in the financial world. A final PostScript. Every year we receive a Christmas card from our pharmacist. I do not consider this unusual because our family are very good customers. The unusual thing in this. I think our pharmacist’s religion is non-Christian but he sends us a card to celebrate a Christian event. Now this is multiculturalism working at its best. Anyway, no matter what our chemist’s religion, he is an excellent family pharmacist. On several occasions our pharmacist found anomalies in medicines and dosages prescribed. His alertness and advice is greatly appreciated.
Because of the level of my injury I have very limited physical movement. A slowly awakening bicep muscle permits some movement in my left arm. Aided by the skills of some talented physiotherapists, occupational therapists and genius technical designers I am now able to drive my wheelchair using my left arm instead of chin control. I can usually drive my electric powered wheelchair anywhere. Acquiring my wheelchair skills was not without incident. I have been bogged, jammed between lift doors, suffered simultaneous punctures in both right side tyres kilometres from home. While in the chair I have also rolled over backwards and totally lost power.
However, the major challenge is not my physical disability and lack of wheelchair skills but man-made barriers. Many pathways in my area have barriers to prevent motorcycle access. Unfortunately the barriers also prevent wheelchair access and I am greatly disadvantaged. I have also noticed that people pushing strollers also suffer the same fate. I have written a letter to my local council and expect the council to carry out remedial alterations soon. At the time of writing I have finally received correspondence acknowledging receipt of my e-mail. The council’s acknowledgement required several phone calls and retransmission of my original e-mail. It looks like bureaucratic red tape will delay a satisfactory solution. Why do bureaucracies make it so difficult for people? Especially people who have some type of disability. Why do they forget that they are there to help not hinder? Why do some people forget that the particular section that provides their livelihood was established to help a disabled person, not to strangle them in red tape? Fortunately after observing very skilful Social Workers from my hospital and rehabilitation unit and equally talented Case Managers at the Community Participation Project and Spinal Outreach Support unit, my wife and I have the confidence and negotiation skills required to part the red tape and achieve a satisfactory outcome.
In the preceding paragraph I have commented that some bureaucracies make it difficult for disabled people. This is most definitely not always the case. I have been involved in a project financed by the Motor Accident Authority. The project is known as the Community Participation Project (CPP). The scheme consisted of a number of survey groups made up of participants with injuries such as mine. I completed regular surveys which in turn would be collated. I also participated in workshops organised by the CPP from time to time. Obviously the survey result will be applied to benefit future unfortunate travellers down a similar road of disability. The CPP used my purpose-built vehicle in some TV community announcements. My photo also appeared on Motor Accident Authority brochures. In return for participation, the CPP assisted my specific causes by wielding a path through previously unnavigatable forests of red tape. My case manager found ways of financing necessary home alterations which would not send our family bankrupt. This assistance was absolutely wonderful and extremely good for morale when I’ve felt insecure. My case handlers all had excellent skills in identifying ways which made funding available to purchase special aids. In my case these included units that allowed me to operate doors, televisions, heaters/fans, air-conditioners and computers. In one instance my case manager from Spinal Outreach Support identified a system to answer and make telephone calls. CPP found a way for me to get it installed. However, it is a pity I can’t filter those incessant marketing calls from overseas. If I had to nominate what CPP assistance helped me most I would quickly nominate the path the CPP, together with, Helen, a very switched on social worker at the rehab unit, were able to navigate when they acted as my advocate to get me home.
Basically, a bureaucratic anomaly prevented funding to provide the carer support I needed at home. My home alterations had been approved and completed. However, because of my injury, skilled carers were required to assist in the morning and evening at home. Because I was aged between 50 and 65 years, an anomaly in the allocation of funding for carer support prevented me from coming home. The bureaucracy’s solution was to throw me into a nursing home and forget about me. I can understand that hospital officials were under pressure to find beds for other clients in need of specialist rehabilitation treatment. But I cannot condone that the solution was to dump people such as myself in a nursing home and allow us to vegetate because of bureaucratic inadequacies. It’s not as if the rehab unit is a five-star outfit. It’s not even close. No one would fight to stay there by preference. My wife and I burst into tears when I first arrived. The place needs to be ” nuked ” and replaced with a purpose-built specialist rehabilitation centre. The buildings are obsolete and totally inadequate for the needs of spinal rehabilitation. Facilities and equipment are almost Third World . Broken equipment is often not repaired or replaced. The unit swimming pool was out of use the whole time I was there. Even the communal television set barely worked with someone having to move the aerial cable around the room to get a decent picture. In a utopian situation future bed shortages may be averted by clients going home or going to halfway houses and continuing rehabilitation as outpatients. My recall of my treatment by two senior rehab unit officials still envelops me with a black hood of depression. I can still bleakly remember an incident when I was in bed after being prepared for bowel care. The rehab unit manager of administration accompanied with the head of nursing confronted me about being moved to a nursing home. I was totally humiliated and thought of taking my life. Fortunately the CPP and my social worker found a way through the miles of bureaucratic red tape. They were able to manipulate my case through miles of the stuff when it was preventing my return home. The CPP also assisted in areas of my advocacy while in hospital, in rehabilitation and also at home. There were two positives from this support. Firstly it greatly reduced the “Black Dog” depression I sometimes felt when problems seemed unsolvable. Secondly I have learnt that I can negotiate with bureaucratic units (including politicians) confidently and expect a satisfactory outcome.
Every day, weather permitting, I go for a drive in my chair around the local area. Close by are cycle/walking/jogging tracks and a beautiful lagoon area. The lagoon area has an abundance of birdlife including waterfowl and fauna. I’m usually accompanied by the family dog Tyler . Our little excursions take between one and two hours. We have become local identities. People often stop for a chat. If I talk too long, the dog becomes fidgety and will finally head off home unaccompanied. Sometimes when the dog arrives home without me, my family panic and will start a search. As time progresses I think my family are realising that my disability is physical not mental. Although I am aging rapidly I do not have Alzheimer’s disease. Slowly, they are becoming aware that I can find my way home but I am easily distracted, not lost.
It took three seconds from the time the ladder moved until my head hit the ground. Almost immediately I became aware that I had a severe spinal injury. The next five months were spent in the spinal unit in a major Sydney public hospital followed by a further eight months at a rehabilitation unit for spinal patients. The big positive coming out of the hospital spinal section and rehab unit was the staff. What a dedicated group of people. They all try so hard to restore your body and mind. Coming to grips with a SCI (Spinal Cord Injury) is nigh on impossible. It is so in your face from the time you wake up until you go to sleep. Even when you go to sleep your SCI dominates your mind. I find lying awake at night the worst. Sometimes relaxation techniques can be applied to trick the mind and a return to sleep is possible. At night, I also listen to a small radio using an earphone. This can also provide a diversion to black thoughts that intrude. In my case music is not enough and I have become a disciple of talkback radio. It keeps me fully informed of what is happening in the world. At night especially, talkback radio makes me aware of how many lonely people listen. Unfortunately it is also an outlet for every idiot born into this world. In my case the idiots make a part of the drama and I enjoy the theatre of talkback radio. It gets me through the night.
I have commented on the group of dedicated people that helped to restore my body and mind. They prepared me to return home and be part of the community again. On my returning home many other support groups are available to give assistance. Among them are Spinal Outreach Support (SOS), Carer providers, PADP; Spinal Cord Australia , Para Quad, local hospitals and councils. I was also introduced to the Technical and Further Education (TAFE) system while in hospital and again during my rehabilitation program. TAFE provided computers and teaching staff with specialist skills. My teachers help guide me along the path of computers and the acquiring of new skills to assist my specialist needs. They introduced me to a wonderful system named Dragon. The system is voice-activated. Dragon is the magical tool that allows me to work my way through the Internet maze. By teaching the computer to recognise my voice, the Dragon system allows me to read newspapers, and books, play games, research projects, watch videos and listen to music. I can access Bill Gates’ Microsoft Word system. This allows me to prepare budgets, medication charts, care plans and reports. In fact anything Microsoft Word can do I can do. While I was in hospital and rehabilitation my TAFE teachers patiently assisted my learning of the necessary commands. I can vouch for the patience of my tutors as I would often nod off in the middle of the session due to medication or the physical state of my body and mind. I also took advantage of a TAFE program to extend my computer skills after finally coming home. I can strongly recommend the extended computer course I did after returning home. TAFE has allowed me to keep in constant contact with relatives and friends no matter where they are. A short command from my voice to the computer and I can communicate with any person or organization anywhere in the world. My tutors introduced me to a wonderful computer program named SKYPE. This program allows me to converse verbally with any other computer with the same program almost anywhere in the world without cost. While our daughter was overseas my wife and I took full advantage of the program. Knowing Sally was safe and we could speak to her at the press of a button was a great comfort when she was thousands of miles away. I think it was my wife, Dianne, who jokingly commented that we spoke to Sally and knew what she was up to more often while she was overseas than at home. Without my computer and Dragon, I could not have written my story. Anyway, what I’m trying to say is that TAFE has helped make my life a whole lot better. The computer training program TAFE used to help me, greatly enhanced the basic computer skills I possessed prior to my accident. Thank you to my tutors Merren, Graham and Bulent (Bill). Your efforts helped move me from the dark side. The computer skill I posses today, is one of the few things that is far superior to when I fell off the ladder. And do you know what? I do it all without lifting a finger.
I mentioned earlier that I became quite depressed when my permanent return home was delayed due to a maze of red tape and a shortage of skilled carers. Carers are a highly specialised group of people who look after me from the time I wake up until the time I go to sleep. They consist of family, friends, neighbours and a dedicated group of paid employees from both government and private care agencies. The paid employees come from various walks of life. My carers backgrounds have been as diversified as an overseas qualified medical practitioner to a motorcycle group member. Professional care workers are a special group of people. I believe the majority work for job satisfaction rather than financial reward. Their shifts extend over an unbelievable spread of hours from predawn until late in the evening. They are expected to be punctual, reliable and work without comment. Their tasks are varied and many. It seems to me the financial reward is small when you take into account carers duties and responsibilities. It appears to me that most care agencies have trouble retaining new recruits because of what is required of them and the small financial reward in return. The rate of pay for carers is the same as our much maligned nurses. They are burdened with a high-level of responsibility for not many dollars in return.
Operational procedures vary between agencies. I will use the example of contacting the care provider after hours. After two years my care provider is still to finalise the procedure regarding my care after hours. Other agencies have an emergency contact number for out of hour situations. My care provider has recommended I have an emergency backup of family, friends, neighbours or even use the ambulance service. I have also been told to contact another nominated agency in an out of hour situation. This option did not work for me as the agency had no staff available in my time of need. Another difference in operational procedures is the allocation of care workers to a client. One agency will rotate staff regularly whereas another may retain staff with the same client for long periods. The rotation of carer staff should reduce familiarity with the client. The work relationship between client and carer should then remain at arm’s-length and be on a strictly professional level. This should prevent the worker from being compromised by overlooking such things as Occupational Health and Safety issues or performing duties other than those specified in the client care plan. The ongoing rotation may also affect staff psychologically in cases of client health deterioration and sadly bereavement. The other major plus for the rotation is more staff are trained in the client’s daily routine. Of course the other plus for more staff familiar with a client routine is a bigger available pool of workers. This, in turn, allows more roster flexibility. Obviously there are converse arguments against the above-mentioned advantages. The biggest advantage of continually using the same staff at the one location is that the staff will perform the required duties quicker and be available for more work at other locations. As a client I have no preference one way or the other. All I ask is that my carers arrive close to time and my carers have the necessary skills to meet my requirements which can at times be very demanding. It is certainly a lot easier working with staff who are familiar with my routine. I find it both physically and mentally exhausting working with inexperienced carers. It is necessary to be able to communicate my needs and requirements to my carers. From personal experience I know that carers can’t read my mind. If I’m feeling some pain when I’m being moved my carers will not know unless I tell them. The same applies if I have a specific need. I must make sure I clearly define what needs to be done and that my carer acknowledges and understands my instruction. I can remember an instance when I had some painful chafing in my lower groin area. I was trying to use some delicate language to describe what was wrong and the location of the chafing. I also directed that I required some cream to be applied to help the affected area. My carer responded “Oh, your pants are too tight and they are crushing your balls into your groin. Peter, what you want us to do is to loosen your pants in your groin and use some Canestan cream.” Yep, spot on. Could not have said it better myself.
I have already commented on my care, but it is such a critical factor in my life I would like to discuss something else. How my care is done each morning dominates the rest of my day. If my bowel care is incomplete, the offending result may not only cause discomfort but also major infection. If I’m not seated correctly in my wheelchair, the offending pressure areas may result in me being confined to bed for months. If my carers don’t arrive, I may be confined to bed in the morning or left in my wheelchair at night. When I first came home from hospital I was greatly concerned that if I raised any matters with my care provider I may have not received a favourable hearing. My homecoming was delayed three months and care availability was a major factor for the delay. A proposed solution was to remove me from the rehabilitation unit into a nursing home. When I first came home, I did have some care issues but I was afraid that if I raised them with my care provider, the transfer to a nursing home option would have been reconsidered. As a result I lost confidence in my ability and also became depressed. Fortunately I have overcome my reticence to raise care issues. I now feel confident to raise any issue. I know my care provider will listen and together we can negotiate a satisfactory solution.
I’ve already mentioned that I have a very good support group. My support group consists of neighbours, friends, relatives and immediate family. Our friends and relatives seem to know when we are struggling and will appear at our front door or calling on the phone. When my wife had to go into hospital, two special friends moved into our home to care for me. These special friends, who live many hundreds of kilometres away, unhesitatingly came to our aid. We also have some very special friends who live several doors away from us. Their daughters and our daughter have grown up together and are like sisters. The whole family has come to our rescue on many occasions. My mother is also ever willing to help. My mum, who is 88 years of age, quite often comes up to stay with us and lend a hand. I have already described how our daughter, Sally, interrupted her overseas holiday. She is also a great support to both her mother and me. A smile from her makes my day. The one-on-one chats with my daughter will be treasured forever. I’ll never forget how Sally and Dianne were there for me at my greatest time of need. Amid this time of turmoil our daughter was not only able to support myself and Dianne, but complete her University studies and achieve an excellent result. I still remember with pride, sitting with my wife in the University Great Hall, watching Sally’s University graduation. Finally, there is the leader of my support group. If you haven’t guessed already, it is my wife Dianne. Without her there is no story for I would not have survived this ordeal. Many times along this trail I have wanted to finish things but my wife’s love and support has kept me going. My wife has an inner strength and determination I cannot describe. She has her own health problems. She will not submit to them nor will she let my issues defeat me. Dianne has enough artificial joints to shut down an airport but she still positively moves on from each setback. Together our love makes us invincible. We are still corny enough to say I Love You each night before we go to sleep.
My little story has turned into a big one and is now coming to an end. I started to write a short story concerning a three-day stay in hospital. Instead I have produced a long story covering three years since I incurred my spinal injury. There are many things that I have neglected to write about. I haven’t covered how my workmates organised a benefit dinner. I haven’t described my inner feelings as I saw a sea of smiling familiar faces as I entered the huge room. The enormous amount raised by my friends, workmates and industry associates still leaves me breathless. It was enough to purchase a fully automated transport vehicle fitted out for my special needs. However I have written enough for now. I hope you enjoyed my story.
2nd March, 2008