Being a carer for my husband: a real life experience – pt 2

This is the second article in the series by Nan Bosler about caring for her husband.  Read the first article Being a carer for my husband: a real life experience – pt 1

Bill had two strokes but after rehabilitation he was now home.

In the beginning we didn’t seek any help and managed quite well.  I was one of the lucky ones I did know that services were available but felt that we were managing, so scarce resources should be used by those who needed them more. It is only in the last few years as Bill’s needs increased so greatly that I called on those services.

I am just one of the million Australians who provide care for family members or friends in New South Wales.  Our stories are all different but the similarities are many.

Being a carer changes your life.

Being a part of the community had always been second nature to me, as a teenager I had began looking around to see where I could make a difference. I have been lucky, Bill had always supported me and the children and I had been able to indulge in my love of community. I’d also been able to put into action my strong resolve that learning is a lifetime experience.  I had just started a Masters degree in Local Government Management and had planned to go on and do my PhD when Bill had his strokes –  he now needed me at home. Should I stop all my involvement and just stay at home?  I wanted to do the right thing, but I wanted to keep involved too.   A painful dilemma!   The guilt was overwhelming.

I severely cut my community involvement and just kept on the activities that were more important to me – no more night or weekend activities. I took a break from University. Later I finished the Masters I had started but shelved the PhD, maybe one day.  There is still time.

An extremely difficult year!

Early in 2000 I found that I had cancer.  It was an extremely difficult year.  I attended the oncology clinic at the local hospital and began to find out even more about the Health System.  One morning in July a volunteer driver from the hospital picked me up and drove me to the oncology clinic, I was due to come home in a few hours.  It was a week before I made the return trip.  Our family rallied around and took turns to stay with Bill.  You hear sensational stories of people being left waiting for ages for a bed. It did take most of the day to find me a bed but during that time tests were being done and someone always seemed to be checking to see if I was alright.  I can find no fault with the attention I was given.

Discharge planning has rightfully been on many agendas for a long time.  It is an issue of great concern.  In 1994 when Bill was discharged it seemed to mainly be left to the person who would be at home to say if they needed something.  In 2000 more pertinent questions were asked of me and services such as meals on wheels were immediately put in place.  It was decided that I shouldn’t be discharged until home care was provided.  Some 8 weeks after I got home they came to assess my needs for that assistance with housework.

I was a public patient but the care and attention I received at the hospital, in the clinic and at home was excellent and because of it life returned to our new normal in 2001.

Bill’s needs became greater 

Bill suddenly and severely deteriorated in January 2003 and in February had another 2 weeks at the rehabilitation centre but this time it was mainly for respite.  It was then that I began to make use of some of the many wonderful services available to help people stay in their own home.

Bill had still been able to manage the front steps, with help, when he came home but as the years went by that became impossible and he was confined to a wheelchair, and he needed someone to push that wheelchair.  There was then no way that I could get him out of the house.  The plan was to put in a new path across the front and up one side of the house, ramping the path onto an extended deck at the back of the house.  Was it possible to get financial assistance to help pay for this?  Maybe, but it would be 12 months before any money might be available.  Luckily our family rallied around and did the work themselves and we just had to pay for the materials.

I could now take Bill out again.  Different environments were very important and I was determined that Bill would enjoy interesting outings.

Our story will continue.

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