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it's the whole package




When Ray has his major strokes in 1999 we had six weeks at Bendigo, a rural city in Victoria about 600 miles from where we live. Ray was in the big hospital, in and out of intensive care as he had strokes, embolisms, burst stomach ulcers and arrhythmia attacks. I stayed at the old nurses home, now used for visiting students and stranded patients and their families. There for the first time I talked with other caregivers. Up to then I had probably spoken to a few but it was more in a :"You have my sympathy, dear" way than in a way that was supportive. This was the first time the person who desperately needed support was ME!! Now I listened to what others had to say about the difficulties of living with someone who needed a lot of time and attention and devotion as their care needs increased. Hey! this was all news to me. So I listened really hard. I needed to know what lay ahead of me.


When I was a telephone counsellor on the Lifeline phone in the late 80's, early 90's,I spoke regularly on Wednesday afternoons to a guy named Bill. Bill cared for his wife with a mental illness and his three daughters all in primary school. He was a cheerful voice on the phone. He called because those who cared for his wife focussed on her, no-one seemed to care about him. So he rang our support number to just debrief about his role as a carer, tell us about his week and tell us some of the problems he faced as a male carer in a female household. I think that was my first real glimpse of the loneliness of the caregiving role.


Bill sometimes said that although he loved his wife he didn't know how long he could continue to live that way. I never knew what happened to him as I changed to a Thursday evening shift to help out another counsellor and no longer got the calls. Due to confidentiality issues even if I had asked the person who had taken over my shift about Bill I would not have got an answer. It was one of the frustrating things about that job that people only came into your life briefly and when you got to know them, and like them , as I often did, they could disappear at any time leaving us wondering what had happened.


Other callers also became a favourite time on the shift, little old ladies nursing sick husbands would phone in on Thursday nights, or any night come to that, after their charge had gone to bed. I guess telephone counselling services functioned a lot like this site does, except that the counsellors were trained and the clients were anonymous. Other similarities were that often both parties were reaching out, the counsellor as part of a wish to help in the community (in an anonymous way in some cases as they would have been well-known people) and the clients were reaching out to get the help they needed. Not all of the calls were traumatic or of a vital nature, some people just felt the need to chat for a few moments to push the loneliness away.


The journey after Ray came home from hospital and rehab in 1999 I have documented in other blogs. I found the changing role from wife and wage earner, to wife, mother, daughter etc and caregiver pretty harrowing. I was not an uncaring person but I was not a natural caregiver. I had to be trained by a lot of people in small increments as I learned to care for Ray's physical and emotional needs. I had three kids and in some ways I suddenly had a fourth, albeit one who had formerly been my husband, lover etc. Now our roles were changed and I did not find that easy to take to. I so empathise with those who come as newbies to Strokenet and express their chagrin, fear, worry and sometimes despair as they too become caregivers to a stroke survivor.


In 2000 Ray broke his hip and I stayed in a hostel set up for people using the oncology services at the hospital which was on the south coast, again a long way from home. Only a few of us were caregivers, the rest were patients having daily scheduled treaments that required them to be near the hospital on a 24 hour basis. Having them live close by but not in the hospital was seen as an advantage as they could actually have a close relative live in to support them. I felt as times as the cancer survivors came back from treatment that I as a caregiver was one of the lucky ones! I got friendly with an older lady who was there while the surgeons operated on her husband who had cancer but was also having a hip replacement. She was not well herself and said to me one day:"It is not just being a nurse to my husband, it is the whole package!" I think after all these years I suddenly know what she means.


It is not just giving Ray the pills and the insulin. It is about remembering to change the needles, shake up the mixture, remember which side it went in yesterday, put it back where I got it from. It is about going to the pharmacy, for the right med, on the right day. It is about going to the doctor's and asking the right questions. It is about being an advocate for Ray in his contacts from day to day, filling in the information he does not remember, being his social secretary, his messenger, his letter writer. It is about paying the bills on time, keeping the appointments, remembering who you phoned last and about what. It is still being a wife, mother, grandmother and daughter and still doing all of the above.


I know some of the single survivors do a lot of this too, they are both the survivor and in a sense the caregiver as they learn to deal with all the stroke related/medical related issues and keep a household running. I know what a strain it must be on them - as much as a person who has not had a stroke CAN feel that tension. It is not as easy as we imagine to feel another's pain.


I want to update the history of caregiving sometimes. To explain that where I am now is an indication of where I have come from. The years in Lifeline telephone counselling, pastoral care with the churches, my stint in a major hospital as a voluntary chaplain have all had a place in the way I am now. None of us came to the caregiving role with an instruction book. We all have to learn as we go along. Like child rearing most of us get just one go at it and will never know how the results relate to what we did. It is a process, sometimes a rewarding one, and sometimes one you wouldn't wish on your worst enemy.


To some people who look on at our struggle it must all seem fairly simple, after all how much trouble can a lovely gentle smiling person like Ray be to look after? I guess what they fail to see is the same struggle as we all put into working and looking after kids at the same time. I work as a nurse, counsellor, cleaner, gardener, cook, housekeeper, secretary, personal assistant etc for one man - Ray. I also act as driver, medical advisor and so many other jobs that you can probably add to if you think about all that I do.


Unlike a lot of women my age I can't spend hours drinking coffee in the mall, getting my beauty treatment , buying bling. I can't flit off on holidays by myself, visit friends or family for a weekend on my own, get myself back in shape with a personal trainer. I am restricted in what I do as I have a limited number of hours during which I can be away from the person I care for. I am not complaining...hello...do I look like a person who needs my eyelashes tinted?


But I am saying caregiving is not just a job, it more than that, it is the whole package.



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Dear Sue--You wrapped that package up very prettily and tightly. Your writing brought back memories of the days when I cared for my parents and what I require of my son now. Take Care. LK
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