Room 14

The resident in the room opposite to dad's has the TV on a lot of the time and at a volume high enough that the whole home could probably here it. His channel of choice is ITV as it's Jeremy Kyle in the morning and then Tipping Point and The Chase in the afternoon, with everything inbetween. He also uses the medium of grunting to get the attention of the carers, and it can be just as loud as the TV.

I don't mind it myself as I'm use to what goes on in mum's nursing home, but it's a good job my dad is half deaf, because it would probably drive him balmy.

It's not a huge room but it's clean. It's a lot different here compared to mum's nursing home, but I guess we are so much familiar with that place and are comfortable with the fact she is looked after and doing well under the circumstances. She doesn't know what's going on with dad of course, even if I tell her.

Unlike the other rooms, dad's doesn't doesn't have his name on the door. We don't really need to put one there. I was in the midst of doing an 'About Me' poster to put on the wall, so that the staff knew a little of dad's history, his daily routine, and what he likes to eat or watch, but there is little point now as he's not eating and no longer watching the TV we brought in.

I took photos of the family from home and placed them up on the shelves here, but he can't see them either. There are a couple of my mum, smiling as she always did, and photos of his grandkids. In the cupboard hangs a few of his clothes: a couple pairs of trousers and a few of his shirts which he won't be wearing anymore. Everything we brought along is too big on him anyway, as he's lost so much weight.

We brought in some nibbles for him too, like packs of Walkers Baked crisps, cheese and onion, his favourite, and a chocolate orange, some fruit to have nearby, but he never got round to having any. I even brought him a Budweiser in the first days, in the hope he might have appetite to enjoy a beer for the last time, but he couldn't manage it. (When I was a kid, I would run to the fridge to get him a can of Bud whenever he came home from work - that's a legacy he's left me, as Budweiser is my lager of choice).

As I type this, he is laying in bed, where he hasn't moved from in the last few days. Since his move to the nursing home, his body has slowly but surely been shutting itself down, and I've been witnessing the things that the palliative care nurse had prepared me for. He doesn't eat anymore and hardly manages a few sips of water or tea, and can't even use a straw to drink his vitamin shake. The pain appears to be under control though. He can hardly speak but when I ask him whether there is any pain he manages to shake his head and whisper a No.

At times like these, you start to read about it all. What happens for the person when the time comes, what you need to do afterwards etc. It's not exactly a pleasant thing but it can be useful. What I found amazing is just how accurate a booklet published by Age UK about the process is. It explains what is happening when a person gets closer to the time:

Your loved one may spend an increasing amount of time sleeping, and appear to be unresponsive and may be difficult to rouse... Their hands, arms and feet might feel cool to the touch ... It is normal for people nearing death to have a decrease in appetite and thirst, wanting little or no food or fluid ... Regular breathing patterns change. They may develop a different breathing pace ... The person may speak or tell you they have to have spoken to friends or family who have already died; they may tell you they have seen places not visible to you. Often the person will feel quite reassured by this.

This is exactly what has been happening with dad.

On the one hand, I read all this with some relief and comfort, because I know that this is real and things are coming to an end and it'll be over for him - what he has, cannot be fixed. But on the other hand, there is no definitive timescale involved and it could happen at any time, within a day or two, or maybe he will hang on another week. The knowing and the waiting is painful.

It's interesting to learn though how the hearing remains until the end, so I've spent time telling him about his grandson being the Star in the upcoming nativity play they are doing, and how his granddaughter is teething and giving her mum grief with feeding, what we did at the weekend, and other silly things. I know this is a good thing, but it is something that is so very, very difficult to actually do.

I find myself listening to the sound of his breathing and watching the motion of his chest. At some point it's going to stop, and to be honest I would be glad if it were to happen while he was sleeping soundly, comfortable, no pain, no fear. It's all we can ask for now.

Autumn Turns to Winter

There is an old family photo that I often think about, of my father and I at what I'm pretty sure must be Windsor Castle. I'm standing behind him on a wall with my arms around his shoulders. I must be only 5 or 6 years of age. We are both smiling at the camera - mum will have taken the shot. I don't actually remember that particular day out but the photo means something important to me.

It is 3 years since my father had a heart-attack, the second in his lifetime, triggering everything that has happened since with mum going into care, her illness taking away everything that made her who she was, and the stress and anxiety that came with it all. I still remember the morning I received that phone call from my wife telling me something was wrong, how panicked she sounded, and how I dashed out the office and made my way to my parent's house as calmly as I could. In the car, I kept saying aloud to myself I'm coming, I'm nearly there, hang in there.

The look on my mum's face when I got there will stay with me forever: one of confusion and fear, not exactly knowing what was going on and what was happening, while dad was being tended to by the paramedics. By that time, he was really struggling with mum's dementia. It was afterall only a few days before she was due a short stay in the residential home so he could get some respite. Of course, she spent 3 months there before being transferred to the nursing home where she is now.

After he left in the ambulance, I remember packing things up for mum, some clothes and toiletries, and checked the place over before taking her to ours until we figured out what happened next. It was the last time I'd see mum sat there in her spot on the sofa, closest to the window where she would look outside and see the world go by. I don't expect I'll ever overcome the pain I still have over leaving her in the residential home after that. It is truly one of the most dreadful things I've experienced.

I face doing that all over again with my dad. The difference is that he still has his marbles, while mum did not. I don't know if that's a good thing or bad.

We are in the midst of arranging a move to a nursing home, where he will see out the rest of his days. I don't really know what I'm suppose to think about that, or whether we should be doing something different, but he accepts it as something that needs to be done, and indeed it's in his best interests.

The palliative care team have really been supportive. I had no idea such services existed until this all came about: they liaise with the local council, district nurses, my dad's GP and local pharmacy, organise visits, and generally help get things done. Truly remarkable.

It's already many months since his diagnosis, and the timescales the medical team advised us of. The radiotherapy he received did help in the short term, but over the last few weeks, things have got worse. He is getting less mobile by the day; indeed I wonder whether he even manages to get out into the garden anymore. He is eating a whole lot less, and finding it increasingly difficult to do normal day to days things like washing and preparing food for himself. His clothes are baggy on his frame. He is haggard and drawn - a very tired and aged look has come over him in such a short space of time. When I speak to him, his voice is strained and he struggles for breath. He's done well to cope on his own like he has, sticking fiercely to his independence, but the time has come for him to get the care he needs in his final days.

Meanwhile, my wife and I still have a young family to raise. Our son is 3.5 years, full of energy and smiles. Our daughter, born early at 37 weeks, is now 5 months old and a healthy baby - no longer the tiny, skinny thing she was back in May. It is hard, but we manage. Having young children is difficult enough, so dealing with everything associated with dementia, cancer, social services, palliative care, power of attorney, end of life arrangements etc does not make for a merry time. But this is life: shit happens. People often tell me that they wonder how we do it, but it's not something we've ever really thought about: we don't know any different, and all you can do is get on with it.

I tell this to mum when I see her. Not that she understands. I tell her that her grandson has started at pre-school, and loves being there. How he can be cheeky and a pain in the backside a lot of the time, but bright and healthy and always singing and playing. How her grandaughter has starting teething and has been agitated, chewing on her hand or tongue and drooling a lot, not sleeping for more than an hour at a time and crying a lot, which is exhausting. But she is beautiful and she has her grandmother's eyes. I tell her about how we recently came back from holiday during our son's half-term break, where we got to spend time with my wife's friends and family back home, and where our daughter was baptised (and screamed the whole way through the service and ceremony) and that the weather was good and travelling with two young kids wasn't as bad as we had feared.

I tell her that she gave us such a scare, too. Because we had just arrived on that holiday, and were on our way out of the airport when a call came in from the nursing home, saying she was in hospital. Not exactly the best start to a holiday. After a spell in hospital and antibiotics for an infection, mum returned to the nursing home and she is doing pretty good at the moment, under the circumstances.

She remains a tough old girl, even after everything she's been through. She is at least safe, comfortable and looked after. This is what my father needs now, but I'm bracing myself for that moment he leaves his home for the last time, just like mum did three years ago.