My Dad Dennis – An end of life story
Dad was always fit and healthy. At 76 he was still playing bowls and would often have a walk around the block, chatting to everyone. He started to get pains in his lower back and around the front of his abdomen. He made an appointment at the doctors and he was sent for blood tests and an x-ray. Nothing was mentioned to dad what this might be at this stage but we saw how much weight he had lost.On 5th September he was in so much pain a neighbour drove him to the A&E. A scan was arranged but no medication was prescribed for his pain.
On 13th September dad had an appointment to attend the hospital to see a consultant and go for an x-ray. The x-ray wasof his spine, dad was unsure why seeing as the pains were on his lower half of the body. He was still in pain and didn’t leave the house as much. He stopped going out at the weekend which wasn’t like dad, he was an ex miner and liked a pint or two. Looking back I dread to think of the pain he must have been going through.
All of a sudden he was receiving lots of hospital appointments. One was for a scan on 21st September. It was almost as if there were signs of an illness but no explanation from anyone what was happening. Dad rang the doctors on 3rd October to get blood test results, they couldn’t tell him much but the doctor said that the scans he was having tied in with the blood test results and he was now under the hospital. But what did this mean? And still nobody was treating him for the pain he was in and it had been 2 months now.
Another appointment came through for 30th September, this time for a biopsy of dad’s lungs, again no explanation why but alarm bells start ringing and I could tell dad was starting to worry. Another one came through for 10th October from the Northern General to go for a PET scan. I went on the internet to find out what it was. There I saw the words I was dreading seeing. ‘A PET scan can show how body tissues are working, as well as what they look like. It can help to diagnose and stage a cancer’ How did we get to this stage without anyone actually sitting him down and explaining what was happening? But mum and dad are very much of mind that you don’t question a clinician as it’s not the right thing to do.
The day after the PET scan dad received a call from CRH who had made an appointment for him to at the respiratory clinic; we knew this couldn’t be good making the appointment 4 days after the scan so we decided as a family to go with him to the appointment.
The day is still so clear in my mind. It was14th October. Dad looked so distant waiting. Nobody could prepare us for what we faced, it was about to be the worst day of my life. A female consultant greeted us and asked dad what he knew so far. He said I know nothing really, I have an idea what’s wrong with me but nobody has told me anything. She explained that the PET scan showed cancer in his lungs. It was all over his chest, in his spine and also in his liver and it was terminal. She was extremely kind and sympathetic; she took dads hand and said she was sorry. I presume giving this information to anyone is extremely hard. To watch your dad break down and cry is absolutely heart-breaking, was this really happening, how can someone have cancer at this stage without there being earlier warning signs?I had questions, what happens now, how long has he got? I mentioned to the consultant that dad had been given nothing for his pain so far and she prescribed liquid morphine.
The consultant introduced us to a Lung Cancer nurse who took us all into another room. Dad sat there and he kept saying 10 weeks, 10 weeks.What’s 10 weeks dad, but no answer. The options were opened up for dad and he was told he could have chemotherapy. This wasn’t something dad really wanted but as a family you want him to try everything possible.The not really knowing how long he had was hard. How can you make any decisions not knowing the timeframe?The nurse was one of the kindest, considerate and down to earth people I have met; you can’t put a price on that. She sat, listened and spent time with us all answering questions.She gave himsome information leaflets to read.She told us that the dad would see an Oncologist the following week who would talk through treatment etc. She said she would contact Ashgate Hospicecare Palliative Care Nurse Team.
We left the hospital dazed. Dad sat in his usual chair at home and looked at the picture of his Grandsons, although 26 and 20 he wouldn’t get to go to their wedding, he wouldn’t get to see them make families for themselves.Dad hadn’t have a good night and by lunchtime the following day he started being sick, but what he was bringing up was black. Mum rang 111 who sent out a paramedic who stayed for 3 hours. On looking at the morphine instructions he said dad was taking too much, but this was what the consultant told him to have. Dadwasworried about taking the morphine even tho it was helping with the pain he had been having for months. He wasn’t sick anymore and took the morphine in smaller doses.
On Monday 17th Octoberdad saw the oncologistat Chesterfield Royal. Again she asked what he knew and this time went into detail on where the cancer was and the treatment which although wouldn’t cure could slow the process down. She talked about the side effects of the treatment and explained the procedure. Dad looked at mum and said what do you think? She said it’s up to you but it should be worth a try. They explained the chemo would be at CRH and an appointment for this would come through within a week.
The next day Dad received an introductory visit from a palliative care nurse from the Ashgate Hospice. Again, a really lovely lady who went through dads details and explained their role and what they were there for, how they could help and how to contact them for advice etc.
On 26th October dad was taken into hospital because he became very short of breath and was struggling. I drove him and mum to the EMU unit where he was supplied oxygen. Dad was transferred to a ward later that evening and had an ex-ray the following day. He was told his lung needed to be drained of fluid but it was another day before he went down to have the drain fitted. Dad had nearly 3 litres of fluid drained. .He looked so poorly while he was in there but the staff looked after him well.
The Lung Cancer Nursevisited dad on the ward. It was clear at this point that chemo was now not an option. The chemo appointment had never come through up until him going in……did the hospital know that he wouldn’t realistically be given the treatment as he was so far advanced but wanted to give us hope …? Although pleased to see the nurse, dad was getting very tired and fed up of so many clinicians coming to see him, asking questions yet not really getting anywhere.
The time to leave the hospital came just under 2 weeks of him being admitted, but another hurdle was about to hit us. Dad was not now well enough to climb the stairs at home;he needed a bed, oxygen and a commode. He left home not knowing that was the last time he would see his own bed and bathroom. A nurse came into his room to say Continuing Care were on the phone what did he want? Dad didn’t even know what that meant. I explained that this was to get carers into the house to help him wash, dress etc. so how about one in a morning and one at night? Again, how had we got here? He was only diagnosed over 3 weeks ago and he’s now going to be bound to downstairs.
All the equipment was delivered home before dad came back. On 7th November he left hospital but without medication which would follow in a taxi. OK, so who was going to explain what he needed to take, how often and when? Was the taxi driver skilled to do this and should he have controlled drugs in his vehicle? Fortunately a nurse, who happened to be afriend’s daughter worked on the ward, heard about this and actually brought the medication for him after her shift. Dad cried when he got home that day, I’m not sure if it was relief to be home or what he was coming home to. Mum now had a front room full of equipment, very new to her and being extremely house proud she found this difficult.
I had been given consent by dad to have access to his records etc. I got in touch with his GP Practice Manager, whom I knew and went to see her. I broke down and told her what had happened. It was here I was given the best advice I could have. She told me to take time off; the time I needed to spend with dad would be priceless, do and say those things you need to say to him. I won’t lie, I felt guilty not being at work but to be honest I wouldn’t have functioned especially not realising what the next few weeks would be like.
I helped mum care for dad, my brother and sister who were working helped as much as they could but I wanted to be there. I was always a daddy’s girl and I needed to help mum. The carers come twice a day and dad grew fond of one particular carer, he said he would ask to be a regular for dad and it was obliged wherever possible. The first week was bombarded with visits from district nurses, carers, hospice nurses etc. Mum was finding this hard with lots of people coming into the family home. She was also, cleaner, cook, nurse and trying so hard to get her head around all the medication he was taking. The nurses were great asking how mum was when they came;they genuinely cared for mum’s wellbeing too.
Trying to get dads pain under control was a process we had to go through. They managed to start dad off on a syringe driver before he left the hospital, but as time went on the drugs got higher in dosage. He was on the syringe driver, patches of morphine and liquid morphine when he needed a top up. The questions were still going round in our head…..how long would this last, how long will he be like this but nobody would actually say. I met with two friends that worked at the hospice, I asked if they could bring me any information leaflets they had about dying, and I needed to talk to someone open and honestly. What could I expect to see, how will I know the signs? I found one leaflet helpful on how to recognise this and what to look for, although you do start to look in advance of those signs.
Dad deteriorated quite rapidly, he struggled to walk into the next room and would just sit staring into the garden, and he didn’t want to see visitors. All the caring was really getting to mum. The medication kept changing while the nurses were trying to keep on top of the pain; she was getting physically and mentally tired. I tried as best I could to help but she was the one there 24/7. I made sure she made time for herself and I would sit with him or be in the house to look after him. I still had my own responsibilities at home so I also found this hard. We talk about more people being cared for at home, but there is so much to think about and what strain this can put on the family and support is of upmost importance.
Mum wouldn’t agree to night sitters, some fear of someone being in the home over night while she slept which I could understand. These people had not been introduced to mum, she could have trusted one of the nurses or a carerthat had cared for dad on a regular basis but a stranger in the home over night was worrying to her.
Someone from thee care agency visitedto go through some questions with dad. A farce, bearing in mind he had been cared for over 4 weeks now. Did he prefer a flannel or a sponge, did he have any anxieties?He’s dying of cancer what did they expect him to feel like? Some reality check on the questionnaire was needed, or for it to be doneearlier in the care. Dad rolled his eyes and asked if he too could ask a question. Of course, Dennis. Then can you tell me why your staff have never got a pen when they come to visit and take mine?
I also received a call from the Oxygen Company who wanted to check we understood all the details regarding the oxygen. It was a good job they called as mum had missed a couple of things she needed to do like filling a form in from the pack to receive money back for her electricity and also cleaning the filter once a week. It was hardly surprising she missed all this as there was so much to take in when dad came out of the hospital.
One day out of the blue mum mentioned Ashgate Hospice and maybe dad going in there. I could see mum was struggling but hasn’t it always been about what the patient wants? I wasn’t happy about this and said this isn’t what dad wants, to which I was told, you don’t have to be here 24/7. We were getting all the help we could possibly get,carers twice a day, district nurse every day and the Ashgate palliative care nurses every other day. Was this about being house proud and having people coming into the home?
It was discussed with the Ashgate nurse when she visited. Dad said it’s what my mum wants and they said well no Dennis it’s about what you want. He just wanted to help mum out and could see how it was putting strain on her, all I could see was someone who wanted to stay at home. The nurse told dad they would put him on the list to have a bed in the hospice. Two days later she phoned; a bed was ready for dad. I was shocked it had happened so quickly. I asked the nurse if I could call back, she said yes but I would need to let them know ASAP as the bed was in demand. I asked dad, was this what he wanted, he said no but he could tell mum was struggling, but I said if you don’t want to go dad you don’t have to.I told mum a bed was ready for dad to which she replied oh god I didn’t expect it that quick to which I replied well isn’t this what you want? I know that’s harsh but times like this make you speak out of term and all I wanted was what dad wanted. I said you need to make a decision as the bed is needed, mum spoke with dad and it was decided they wouldn’t take the bed.
Hours turned into days, days turned into weeks and dad just existed in his bed.Medication was getting higher; he now had the syringe driver, a morphine patch, liquid morphine and tablets for his pain. He was eating less and less and slept more. The Ashgate nurses were constantly on top of his pain gradually increasing the medication.He then became incontinent as he couldn’t get out of bed to use the commode. In all the time dad was home he was never seen by the family GP or Community Matron, was this normal?
On 14th December I received a call from mum to say the carer thoughtwas dad not very good and to call for a doctor. I phoned the practice and they told me that a GP would come out to see him. In the meantime the District Nurse came as an extra visit and gave him something to help with his breathing. Dad looked terrible, it was awful to watch. Around 12pm a nurse practitioner turned up, no GPand said dad had a chest infection and prescribed some medication. If he was no better on Friday to call again and a GP would come out. Later that afternoon the Ashgate palliative nurse came, she took us in another room and told us dad was extremely poorly and he may not make it through the night. Why was dad given medication for a chest infection and why didn’t a GP come out instead of a nurse? The Ashgate nurse told me not to give dad the medication for a chest infection.
I decided to stay that night, I couldn’t leave mum on her own and she was shattered. It was a terrible night; I couldn’t sleep and kept checking on dad through the night. I struggled to hear what he was saying. I couldn’t cuddle or hold him as it hurt him too much so all I could do was hold his hand, he looked so pitiful, it was heart-breaking.