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Stressful, challenging and deeply rewarding: supporting my loved ones to die at home

Retired enrolled nurse, Pat, cared for her husband Don as he died of cancer at home surrounded by family. Little did she know that she would also nurse her second husband Bill when he sadly died of cancer too.

When I asked my husband Don about his last wishes, he said he didn’t want strangers looking after him. He wanted to die at home. So I looked after him.

I’m a retired enrolled nurse and I’ve done a lot of volunteer work, supporting palliative care patients who wanted to die at home. A lot of my shifts were at night. There were times I could sleep with one eye open and other times when I didn’t get any sleep.

I’ve also worked as a coordinator allocating staff to go to patients’ homes, to take them to medical appointments and go shopping and other support like that.

Having that experience made a lot of difference when it came to nursing Don. It meant I knew what to expect. I’m not saying it was a breeze and we didn’t have stress. It was so stressful that I lost 10kg when Don died.

It was important for him to have family around him when he died, and his daughter, son and daughter-in-law and I were all there. Don died three months before our 45th wedding anniversary. He was 72 years old.

Don was a very quiet, gentle, man. He was a boilermaker by trade and worked with metal at the mines. But he was also very creative. He was a potter and a painter. I am still using the plates, mugs and bowls he made and I still have some of his paintings.

I’d often cared for Don over the years when he was sick. From the time we were married he had a disease called ankylosing spondylosis which affects the bones. A side effect was iritis, which made his eyes very painful and sensitive to light. Several times he had to spend six weeks in a dark room with no lights; it left him totally incapacitated.

“It was very traumatic for him, recognising he was going to die soon.”

Then, four years before he died, he got prostate cancer. We went to Adelaide and he had radiotherapy for six weeks. It looked like he had beaten it, but then a couple of years later he got bowel cancer.

We went to Adelaide again and he had chemotherapy for six weeks, which made him really sick. He lost nearly 13kg. We came home and he seemed to pick up a bit.  He stayed reasonably well for about a year but then he had a relapse.

The doctor told us the cancer had returned and asked Don what he wanted to do about it.  His choices were to have chemo, or not.

Don asked how much longer the chemo would give him. The doctor said perhaps a couple of months. Don could not face chemo again. He said “Let’s not do that”. It was very traumatic for him, recognising he was going to die soon.

We decided to go to our beach shack for a short break. Our two daughters, son-in-law and grandchildren came and stayed near us, so we could all be together. Everyone knew Don was on very limited time. They were accepting and very aware that Don couldn’t continue to live in his condition.

When we got back home I contacted the palliative care staff through the hospital.

The palliative care nurses came in and they were extremely good support. Just having them visit, with their comforting manner and their knowledge, was very reassuring. They made sure we had a palliative care bag that was stocked with good medications. They arranged the scripts with Don’s doctor and collected them for us. They also loaned us a shower chair and a toilet seat adjustment. I was able to shower Don and he could walk around with his walking stick, right until the end.

It gave me peace of mind, knowing the palliative care nurses would come straight away if we needed them, and getting their regular calls to see how we were going. Our daughter Mandy is a registered nurse. She stayed with Don when I needed a break. Mandy was very close to her father and we often spent time together. When he became ill she was so understanding and caring.

Don had strong medication during this time. The day before he died the pain was just too severe for him so the nurses installed a syringe driver with metered amounts of morphine to ease his suffering. It was reassuring that no matter how many times Don pushed the button for more medication, it was set to make sure he couldn’t overdose.

Don died in 2000 with his family at his bedside, three months after he’d said no more chemo.

A year later, my sister died. Her husband Bill nursed her as she became bed-bound, confused and disoriented. And he was incredibly dedicated. He set an alarm every two hours to turn her, so she didn’t get pressure sores, and he pureed food and fed her with a syringe.

Palliative care nurses came from 45km away to support him. They gave him frequent advice and supplied him with a special bed and many other pieces of equipment he needed to nurse his bedridden wife. Bill said without the nurses’ help he would not have managed, as he didn’t know anything about nursing anyone at home.

I was primary carer for my elderly parents at the time. Bill rang and suggested we all visit, as my sister had been admitted to hospital. She hadn’t recognised anyone for a long time, but she recognised our mother straight away. My sister died a few hours later. She and Bill had been married for 50 years.

Although Bill was busy during the day he was very lonely at night, even though his daughter rang him every evening. I used to talk to Bill as well, initially once a week and then more frequently.

I invited Bill to come to the beach shack with me. I wasn’t sure how we’d get on. Bill was a gentle man but he was a real bushie. We’d known each other for 50 years, but we hadn’t spent a lot of time together. But having both nursed our partners as they were dying left us with a great deal in common. We ended up becoming good friends and both enjoyed having company. We got married and had seven happy years together at the farm.

Bill was thinking about retiring from the farm when he started having trouble with pain. He was diagnosed with cancer, which required surgery, and that left him with a colostomy which was a very difficult time. Sometimes there was a breakdown with it, and he’d end up in a mess and be embarrassed. We both learned a lot about the colostomy and Bill managed it very well. I used to always change the base for him but he managed the rest.

Two years after his surgery, when Bill was 86, the cancer returned.

The Royal Flying Doctors Service few Bill to hospital in Adelaide where he stayed for six weeks. I spent my days at his bedside. He had an operation, but the doctors told us that it was not going to cure him, the cancer was extensive, and he wasn’t going to get better.

Bill also wanted to die at home, as long as it wasn’t too hard for me. He didn’t want strangers looking after him.

“Having support gave me the time I needed to be able to just sit with Bill.”

When we got home, I spoke to the local palliative care nurses and arranged for them to visit Bill. I was so pleased to have their help as life became very busy. We were very fortunate because they supplied us with a lovely power recliner chair, which was designed to be easy to get out of. They also supplied us with dressings, which helped Bill to retain his dignity and saved us a great deal of expense.

One night I couldn’t get Bill off his walking frame to put him to bed. My daughter Mandy came and helped me. She was pivotal to me being able to care for Bill at home. Everyone needs someone they can absolutely rely on.

Bill had a syringe driver inserted the day before he died and the nurses were there to change it when needed. I felt confident I could call on the nurses at any time. Their help enabled me to nurse Bill at home, and their advice was so good that it made me feel capable. Having support gave me the time I needed to be able to just sit with Bill.

Bill’s family came to visit and were beside him when he died. That was four years ago.

These days I still enjoy the volunteer work I do at the hospital once a week. I am working with a volunteer team called Delirium, Dementia and Palliative Care. We visit long-term patients waiting for placement in nursing homes. I spend time with elderly people who don’t all get family visits. I’m a good listener and it’s nice to have someone you can talk to.

Up at the hospital, I’ve heard a lot of people saying they would like to take their loved one home to die, but they’re scared they won’t be able to cope. I know it’s not always easy, but I think it would be wonderful if more people could manage it, maybe with retired nurses helping them, or even other volunteers who have nursed family at home, particularly if they have palliative care nurses’ support.

I hope my story might inspire someone to realise that, with the right help, they can honour their loved one’s wishes to die at home. The reward is worth the effort.


Comments

  • Thank you for sharing. I cared for my son when he left the Townsville Pal Centre in 2011, He passed away in March this year. It is a most difficult journey, that holds the most magical moments and bubbles of time. Wouldn't have had it any other way.. We ensured Daniel made his own choices. It was all about the patient's choices... Hard road

    - sharon stretton
  • A great reflection on a very sad but beautiful time in your life . A wonderful achievement to provide that level of care at home . Well . Judy

    - Judy Miatke

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