Home-based Palliative Care a Team Effort

Once more beloved husband Olivier arrives home from hospital, but this time by ambulance. This is a special home-coming, though, because the other option was to send him to a hospice. Even though his two doctors thought he was too ill for home care, I am delighted that he is back home here with me where he belongs in our created world and our beautiful evolving garden.

These are the latter days of his life and we are determined he will enjoy every minute as much as he can within his pain management routine. He is now palliative and his terminal condition heralds a whole new regime for living fearlessly. A full hospital bed arrives with massage mattress and we rearrange the dining room in an instant. Luckily the bed fits neatly between the antique German dresser in the alcove and Oli’s built-in bar fridge.

We make many decisions because palliative care godfather Professor Ian Maddocks says Oli must not sleep in the room alone anymore. So, the therapeutic recliner chair which Olivier had made for his late wife Colette is brought down the hallway from the main bedroom and we place it alongside the bed. I begin thinking up a mental roster of all the healthy strong adult sons in our family who can stay overnight to give me a good night’s sleep. This will be crucial for me to cope all day as Oli’s carer. The beautiful French dining room suite, the setting for fabulous dinner parties and family events, now shrinks to a mere metre diameter and is shoved alongside the curtain by the kitchen’s specimen shelving.

Thus, our versatile home becomes a comfortable living environment for Olivier and from his vantage point he can watch me happily cook and clean and prepare our meals. This is the theory, but the reality soon unfolds to be quite a different scenario.

However, for the first night we sleep together and cuddle into each other in a sweet moment, which softens the shock of what happens next.

He accidentally rips out his sub-cut line which carries morphine into his body 24/7. I call the ambulance to come and re-insert it at 1am and there I sit for an hour in the chair waiting. They come, and I fall asleep once more by 3am, but at 5.55am, his pain management machine buzzes and sitting as it is in its leather pouch, I don’t know what to do. “Take it out and switch it off,’’ says Oli, frustrated, too, that the constant noise like a hive of bees is keeping him awake.

Not surprisingly when the RDN S nurse, Donna arrives at around 8.30am, I book an overnight nurse for tonight. It will be one of two nights provided free by the government.

An agency nurse named Julie arrives at 11pm and I am in awe of her attendance when I learn in the morning that she has sat at the end of our marital bed watching Olivier. I return to sleep in our main bedroom, which we vacated six weeks ago because the low height of the bed was impossible for Olivier.

We have slept in bedroom No 2 for six or eight weeks because that poster bed can be lifted with blocks. Julie is a gem and I hire her for the second night in a row.

None of the above would be possible without the amazing RDNS nurses, who arrive morning and night to prepare my husband for his day. They come again in the evening to prepare him for bed and this army of nurses, who embody the qualities of Florence Nightingale, have been the key to my ability to cope with the constant demands of being carer.

Professor Maddocks (see separate story on this “living angel’’, calls in from time to time and a string of others form a caring brigade. A physiotherapist from Domicillary Care checks out the house and soon an array of aids arrive. This time there will be no returns because back in December we took delivery of these things, but Olivier responded so well to the second type of chemotherapy , that we returned them all.

Senior palliative care nurse is English-born Donna, and there is Fran, an elegant mother of five, who arrives at 8am each time, and almost every evening, there is Erica at the doorstep sometime after 9pm. This morning Andrew, a senior palliative care nurse of 30 years’ experience is a surprise arrival and tends to Olivier with the professionalism and gentleness of the women. Overnight, we have sons and friends who sleep alongside him to help him move in and out of bed as he needs.

Olivier and I am so thankful to them because they all make it possible for Olivier to remain at home with me.

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