Hello – I wonder if anyone has any advice. I'm sorry this is a long post, but I think the back story is importnant to share. I live on an island in the North of Scotland, 400 miles away from my lovely 79 year old father who has advanced prostate, lung, liver and bone cancer. Until the beginning of July he was living fairly independently, driving his car and living a pretty full life – alone in his own wee flat. His appetite had reduced and he was tired much of the time, and then in May he stopped receiving treatment for his cancer. He has a great relationship with his GP who told him that he was nearing the end of life and referred him to his local hospice for outpatient palliative care. He was placed on a waiting list but didn’t hear from the hospice about an appointment.
Then on 13 July, he fell late at night and was taken by ambulance to acute hospital. His decline was astonishing. He was diagnosed with servere hypercalcemia and was treated with fluids and bisphosphonates. He was confused, delirious, dehydrated and wasn’t eating. He was in hospital for 10 days, had low blood pressure and various other cancer related symptoms. Dad decided that he didn’t wish for any further treatment and so after a conversation with the Palliative Care Doctors, he was transferred to his local hospice as an inpatient. My young family and I have been able to spend the last few weeks near him because it’s the school holidays and I have a very understanding employer. We haven’t been home for almost a month, but we’re OK with that – for now at least.
All has been calm and peaceful until today. For more than 3 weeks, Dad hasn’t eaten anything (and I mean nothing at all except 2 bites of melon one day last week, and a tiny spoon of jelly very occasionally). He is taking small sips of water, but is finding it harder to swallow. He sleeps deeply for hours and when he’s awake he’s becoming increasingly withdrawn and down. He’s lost interest in all the things he used to enjoy and doesn’t seem to be showing much interest in my son who he previously adored. He’s accepted he’s dying and we’ve talked about his wishes in that regard. He’s been having paracetamol for background pain (which he’s now finding hard to swallow) and he complains about bone pain especially at night. He can’t walk to the bathroom anymore, but can get to the commode with the use of a zimmer frame. He’s uncomfortable much of the time, always asking to be moved in the bed and is clearly exhausted. He just stares into space and sleeps – occasionally engaging with us and today I noticed he was becoming incontinent. This is a huge change to the vibrant, chatty person he was a month ago. He can no longer operate his phone or kindle – another huge change as he was an engineer and very much into his gadgets.
Today, the hospice had to move Dad out of his quiet single room into a shared room to make way for another, more poorly patient. This upset him hugely and he was quite distressed becoming more withdrawn, crying and talking about trying to take his own life. Then, a nurse took us to one side this afternoon and said that they may have to transfer Dad to a Nursing Home as he’s not complaining of pain enough to receive pain management. She said they could give him morphine injections, but only if he asks for them. He’s never been a complainer! I’m sure it wasn’t meant this way, but it felt like because he’s not in enough pain or dying quickly enough that they need to move him on to a nursing home. This is very distressing for us all obviously. The thought of having to find a suitable place when we live so far away is unbearable. I don’t think that transporting him 400 miles over land and sea would be the best thing for him, so we’d need to find him somewhere near the hospice.
I don’t know what to do for the best. Has anyone been in a similar situation? The hospice tell us that they think Dad has a few short weeks left and I’d like to make them as peaceful for him as possible. I don’t think that involves moving him to a new environment. Should I care for him in his home until he dies? How long can frail people live without food? Does every dying person experience severe pain? Please help – I’m at a complete loss on what to do for my Dad.
