We were fortunate to have the services of Mercy Palliative care when Paul was diagnosed terminal with months to live. Towards the end, they were brilliant and a great support to me especially when he passed away. After Paul’s death they provided the family grief counselling for those that wanted it.
Here are some excerpts from my book Conversations with Paul on our experience with Palliative Care and me caring for Paul
When Paul came home from hospital for the last time with the diagnosis that he had months to live, our lives changed and we had to adapt our house to cater for a disabled person.
Paul adapted to being in the wheelchair permanently and we contacted palliative care as instructed by Peter MacCallum. Paul had organised to have them come over to see what the next step was. Paul said he would never get those three hours back and it was a waste of time. Little did he know that there services would be required within six weeks of that first encounter.
We had to rethink and plan the way Paul travelled around the house, having support bars installed in the toilet and the shower. We also removed the toilet door in our ensuite so that he could wheel his wheelchair into the toilet.
Peter MacCallum also leant us a commode to use in the short term for Paul, which helped when he was going to the toilet and also transferring in and out of the shower. The process was to move him from the bed onto the commode, and then into the toilet, then the shower; after that it was from the shower back onto the commode and then, once dressed, a transfer into the wheelchair. This process took time and worked well for a few months. Paul then did what he would normally do and searched on eBay for a commode to buy. We found a similar commode to what we had from the hospital and went out to Blackburn to collect it.
As Sunshine’s rehabilitation facilities couldn’t help us anymore, we were then referred to the local community health Centre and their occupational therapists. So three therapists turned up at our doorstep one day and proceeded to chat with us for a few hours. They recommended a hospital bed; Paul was very adamant that he did not want one, and was definitely not interested in the air mattress that was also on offer. He’d had enough of hospital beds and air mattresses over the past twelve months; all he wanted to do was stay in his own bed. Again both Paul and I looked at each other, rolled our eyes and said we would never get those hours back. It was exhausting and frustrating. Paul and I had worked together for so long and had our routine and ways we managed his disability, so that anyone from outside who came in with other ideas had little to contribute. We would always revert back to our process, as it was simple and easier.
By April and Paul had started deteriorating over the past few weeks, started spending more time in bed and sleeping more. It was now just a matter of time and we hoped he didn’t have to suffer much more pain. The palliative nurse was coming over twice a week and we had a nurse showering him once a week. Paul eventually succumbed to the air mattress purely because of the bed sores that were appearing on his backside and my concern that they were spreading to his hips.
Paul by now needed assistance with everything except feeding. He would have a shower each day depending on his energy, and we would transfer him out of bed via the sally board and onto the commode. I would then wheel him into our ensuite and back the commode up against the wall beside the shower, helping him onto the shower chair. It was a huge process that took time and energy from us both. Paul would use the wall-mounted rails to help him slide across to the middle of the chair. Sometimes I would physically jump into the shower to help glide him across. After his shower, I would give him a towel to dry off and then slide him back to the edge of the shower bench and back onto the commode. Once back on the commode I would dry the rest of him off, apply Sudocrem to his backside and then help him dress. Early this was an easy task for him, but towards the end he couldn’t support himself and I had to do the majority of the work.
I would then get his pads and put them on, and then his shorts and t-shirt. This was his standard dress these days: black shorts and black t-shirt. We had at least ten pairs of each as he could go through two or three pairs in one day, so I was forever washing.
The palliative care nurse was visiting on our wedding anniversary and noticed that Paul’s intake of breakthrough medication was increasing, yet he was not keeping on top of the pain. The nurse called in the doctor to exam Paul and provide the next step in his care. By this time Paul was not eating and found it difficult to hold any food down. The doctor arrived and said that Paul had anorexia, putting him on a steroid to help with the vomiting and give him an appetite. We were lucky that we already had a stash of steroids in the medical box, so we didn’t have to wait for a script or run up to the chemist.
The doctor also prescribed a morphine drive to be inserted. This was Paul’s one fear and knew his days were numbered. After they put the drive into him, he said to me, ‘Darling, this is the beginning of the end.’ I walked out of our bedroom and cried. The gorgeous palliative care nurse came past and asked what happened and I told her. She just gave me a big hug and I cried more. This was heartbreaking – my beautiful husband and soul mate was slowly dying and there was not much I could do but support him and love him with all I had.
Now that the morphine driver was in, the palliative care nurses were calling in each day to check and top- up the morphine. I had extra morphine on hand and a drug to stop nausea in the fridge, so if Paul needed a top- up, I could insert it into the extra line in his arm. I now became a nurse.
Our palliative care nurse had become a part of the family and we just loved her; she was so caring and very good with Paul and the rest of the family, including Ollie our dog.
In Paul’s last week, the nurse told me that Paul was deteriorating and suggested that the doctor be called in; she also prescribed midazolam, an anti-depressant that would help him sleep. I also asked her to organise a more permanent catheter as Paul was still self-catheterising and had lost most of his dignity – and that is one thing I didn’t want to take away from him. We had also organised a hospital bed to be delivered which was such a relief to me as my back was constantly in pain. The doctor arrived around 11 am and told us that Paul was definitely dying; we had the option to move him to a palliative care facility. I was having nothing of it, as Paul’s wish was to die at home and it was my wish as well. It may have been selfish but I’d had enough of cold clinical places over the past twelve months and wanted a warm, loving home environment for Paul. Paul felt the same and had asked the family a few weeks earlier if they were okay with him dying at home. It was a family decision and we stood united with Paul’s dying wish to be at home.
The doctor also prescribed a drug to heavily sedate and keep him calm. When the palliative care nurse came in the day before his death to administer the drug that would send Paul into a deeper sleep, I asked the nurse to explain to the kids exactly what she was doing, as they thought she was putting their father down. Our gorgeous palliative care nurse explained to them that this new drug would just put Paul into a deeper sleep and keep him more comfortable.
After Paul passed away, at around 7 pm the palliative care nurse arrived to prepare Paul for his final journey. When Paul passed away I took the battery out of his morphine drive, as I thought there was no point having any more drugs pumped into the body. I also placed a rolled- up flannel under his chin, as I was advised that this would stop the mouth from falling open if rigor mortis set in. Although this wasn’t the case with Paul, as his body was being collected in a short space of time.
The nurse greeted Paul and talked to him with such respect for him and his body; it was really amazing to watch. We removed his clothes, bathed him with warm soapy water and changed him into a fresh black t-shirt and shorts, which was the norm for so many months. The nurse removed the morphine drive and catheter; he was now free of all medical interventions. She also filled out all the forms confirming that Paul had passed away, as we needed this for the death certificate. I gave all the heavy medication of morphine and the sedation drugs to the nurse as I didn’t want any of it in the house anymore.
We laid him back on his pillow and placed a light blanket over him. He looked old and grey but peaceful.