It is now almost 14 years since my husband passed over. He was diagnosed with an aggressive form of brain tumour after demonstrating symptoms somewhat similar to dementia. However our very understanding physician who knew the patient and suspected the truth, immediately ordered various brain investigations which identified the condition as being glioblastoma.
My husband made it very clear that he wished to spend the end of his life at home. The specialist was extremely concerned for me in trying to look after him as the tumour was in the temporal area of the brain, which can result in violent behaviour at times. However, our local doctor was very supportive and helped to make arrangements for me to have the assistance that was needed.
I managed without help for several weeks, with medication to reduce the swelling and then to also help mitigate any behavioural problems. But the time came when I needed some support and the doctor recommended a nurse to help for a couple of hours twice a week, allowing me to leave the house and do the necessary shopping and other chores.
One Sunday my husband demanded that I take him to a restaurant for lunch. At that point, he became belligerent and I knew I could not manage to get him to a restaurant in the physical and mental condition he had reached. Fortunately, at that very moment a male nurse who had been recommended to me, arrived to meet me and discuss future support. I liked him, and asked him if he would be able to help me at that point, and he quietly put my husband in his car and drove him around for half an hour or so. There was no more thought of need for a lunch out, and he arrived back home quite satisfied.
So for a couple of weeks I had two nurses helping me for several hours each over four days of the week, showering him etc. My son was around during the weekend for a little help occasionally, although not living on site all the time.
The doctor then put me in touch with the local Amitayus hospice group of volunteers, which became quite a godsend to me.
As he came to be largely bedridden, volunteers would come in to be with him while I was able to do some shopping and pick up medications that were required. They were all lovely people, and one woman even sang to him with her beautiful voice. He enjoyed this extra company and it kept him very comfortable.
There came a time when I found that I was getting very little sleep as my husband would get himself out of bed to go to the toilet, on two occasions waking me up as he fell over, first in the bedroom, the other in the toilet. His body was very bloated by then with the medications and there was no way that I could get him back into bed on my own. On one of those occasions, my son who was living in separate accommodation on our property, had just arrived home and I saw his light on. We were able to manoeuvre his father back onto the bed. On the second occasion, I was on my own and had to call the ambulance; I had two ambulances in the driveway (each with a single driver) who helped to get him back into bed.
At this point the Amitayus group organised for several male volunteers to stay overnight in close call to my husband while I slept in a spare bedroom in my son’s little flat.
I owe so much to this group for all the help they gave me over those tumultuous weeks. St. Vincent’s Hospital in Lismore provided a hospital bed and lots of other equipment as my husband deteriorated. Also, a palliative care nurse came to give him medications once a day and generally check on his condition.
Our doctor was amazingly helpful, I was able to ring him on his mobile any time of the day or night, and one day when the nurse from St. Vincent’s left a couple of medications to be mixed and put a syringe to give my husband through a catheter, I found myself quite confused with the instructions from her as I was not trained as a nurse. After a quick phone call to the doctor, he arrived within an hour to my home, set himself up at the dining table with a heap of envelopes and filled the syringes with the desired medications, labelled and placed them into envelopes. He then took my son aside, showed him how to give the medications through the catheter, asking him to take on that task, to save me having to do it. I can’t thank this doctor enough; his service was absolutely incredible and without his support I could not have kept my husband at home.
My husband deteriorated very quickly after that, he slipped into a coma within a few hours and was moved into a smaller bedroom with the hospital bed and all the required bedding and equipment.
My other son and his family arrived after a long drive, and also my husband’s closest friend, a reverend and his wife arrived – pre-arranged to talk with my husband about his wishes for a funeral. We had all, including the doctor, expected my husband would have been fine to see everyone and talk with them about his wishes. However, even though he had been expected to live on for a couple of weeks, this did not occur as his decline was so sudden.
The weather deteriorated at that point, with the danger of our being cut off by floodwaters and the friends had to leave to return to Sydney. Before doing so, his friend went to say his goodbyes, even though my husband was in a coma, when suddenly his wife came rushing into the lounge room where the family were all gathered, telling us to come quickly. As soon as we were in the bedroom, my husband very peacefully passed over there and then. The expected six to eight weeks to his end of life became five and a half weeks. A true blessing and a very peaceful release.
The reverend shared with us all what he had said to my husband in his farewell, “Farewell dear friend, you have fought the good fight and now it is time to let go.” To me, this gave my husband permission to go, something that in this case was absolute gold, and just what was needed.
I give thanks to all involved with assisting us through what could have been a very traumatic experience, and am so grateful that we were able to have a peaceful passing over in our own home.
Beverley C., Australia