So here we are … it’s official. I’m a demi-orphan. Dad died, peacefully, just before eleven am on Saturday 25th May. My brother and I were on separate sides of the M25. My mother was holding his hand. In those last two weeks I had two visits to Dad where there was so much love. He seemed way more lucid too, as if being too weak to speak very much had given him back some brain power to compute the world around him. And after he’d had the last rights he was totally content, peaceful and unafraid.
Dad stopped eating. People with Alzheimer’s do this but when it happened, in April, I was away. I returned form holiday in late April to dire stories from Mum of how thin and ill he looked. Before I visited him, I asked the lady who ran the home about it. She explained that his refusal of food was, indeed, a standard Alzheimer’s symptom. I asked her if this was the end game. She told me that it depended. Dad was frightened to try and stand, he feared he’d fall, so his rehabilitation wasn’t going so well and that meant, ‘some young whippersnapper’ (her words) did everything for him, dressed him carried him … everything. The only thing he had any control over, she explained was whether he said yes or no to food and drink.
So it was about control.
‘How long does this stage go on for?’
‘How long is a piece of string?’ she replied.
She went on to explain that, while it was hard to ascertain the exact motives, at this stage of Alzheimer’s there were three reasons people stopped eating; they’d forgotten how, it was the only thing they could control, yes or no to food, or they’d had enough.
‘It’s very difficult to say but I think your Dad falls into the third group.’
She explained that both she and the doctor who had come out to see him believed it was about leaving. That Dad had simply had enough of this life and wanted to go on to the next one. I asked what I could do and she said bring things he likes for him to eat, so I bought jelly babies, wine gums and Turkish delight for the next visit – three great favourites.
He was pretty dogged, continuing to starve himself for the next few weeks with the odd break where the temptation to eat ice cream clearly became too much for him. During that time I want to see him every week; a bad visit, a pretty good visit when we did silly waves goodbye and I left him laughing and then a completely wonderful one, where I sat next to him in the lounge and recalled stuff my brother and I had done. It was like talking to someone who was half asleep, he was very weak and couldn’t raise his head, so I angled mine down so our eyes could meet. I told him what his grandchildren were up to, my lad and the others, and he smiled and chuckled, and projected this amazing aura of love. There were points where he fell asleep and I sat back and gazed out of the window, at the downs and Cissbury ring but the love thing remained. Then he’d wake up and I’d start recalling stuff again.
I’m a bit mithered about what I’ve told you but I think I mentioned that one visit was very bad, the first after my holiday. Dad told me to go away, so I held his hand and explained that he had a daughter and it was me. He changed then and was happy to let me hold his hand but there was still no response from him. It was difficult to get the measure of this new unresponsive Dad so in the end, I got out my phone, and Gutenberg, and looked up a book he used to read my brother and I at bed time, The Fierce Bad Rabbit by Beatrix Potter. I read it to him.
Dad made no sign of enjoyment but Maurice, next to him, clearly loved it. And next to Maurice was a gentleman sitting very straight with his hands on his knees staring into space. I wasn’t sure if he’d heard or not, until that good visit, near the end, with the gaps where Dad nodded off. In one of the gaps I sat back and looked over at the fellow who was sitting straight up. He was staring straight at me and then, very slowly he raised his hand and gave me a thumbs up. I don’t know what his condition was, so I’ve no idea if he was a simple Alzheimer’s sufferer saying hi or someone who fully understood how hard that previous visit had been and was giving me encouragement. Whatever it was, it brought a bit of a lump to my throat for some reason. I gave him a big smile and a thumbs up back, then Dad woke up again and we carried on.
Five days after that visit, on the Monday, is when I got the first call for the deathbed scramble I described in my previous post. Dad got the last rites, which we knew was important to him, and I felt that I was incredibly lucky that I got to say goodbye with ADBA even if it was three days beyond that before Dad actually left us. Strangely, that feeling of connection I described with Dad didn’t actually go, it stayed there, quietly in the background.
On the Friday, I got a call from Mum saying they didn’t think Dad would last long. I confess I cried on the phone and told her that I couldn’t make it that night. I prayed, sort of, only to Dad, trying to send him love and good thoughts and explain that I’d see him the following morning. McMini hadn’t seen me for four days, then, when I’d finally returned home on the Thursday, McOther was out. He begged me to stay Friday so we could have a family evening together and go to Sussex on the Saturday morning. I’d already said goodbye to Dad so any thoughts of going to Sussex that night evaporated and I agreed.
That Friday night I got a message on the carers’ chat group. Mum had rung one of the carers, worried that Dad would die when she wasn’t there. The home were brilliant and had promised us that when he became really bad there would be someone with him round the clock. They’d also told me we could go any time. The carer said she’d reassured Mum but a little while later, at half eleven, she rang me, in tears. She and her Mum were the original carers. The team has grown over the years but to start with, back in 2012? 2013? It was just the mother and then, shortly afterwards, the two of them. She loved Dad like he was her own father, people tended to do that when they were around him for long, and she explained that she felt as if she hadn’t said her goodbyes to Dad. I told her how the home had said we were welcome to go see Dad any time and said that if there was anything she needed to say to him, to go then. I told her I’d ring the home and let them know she was coming.
A few minutes later she pinged me a text to say she and her mum were going over.
I slept fitfully that night and the next morning, received a message on the carers’ WhatsApp group at about half six. The mother and daughter team who’d gone to visit Dad the night before had stayed with him, chatting and sleeping fitfully all night. They knew it was what Mum would have done if she’d had the strength and it was an act of such complete and utter love on their part which still humbles me.
They were texting to say they were leaving. They said he was able to do a half smile when they shared funny stories, so they knew he realised they were there. By half eight while McOther was out at the shops, I got another call from the home to say Dad only had a few hours left and that someone should come. I rang Mum and told her I’d put out a call on WhatsApp and it’d be the first person who answered.
The younger of the two ladies who’d been with him all night popped up and took her in.
My brother was on his way, I left as soon as McOther came home from the shops.
When Dad died I was on the four lane bit of the M25. No stopping and the traffic though slow, was moving. Thanks to our lovely carers, Mum was sitting next to him, holding his hand. The local vicar missed him, there was some huge Christian festival which blocked all the roads for miles around and she couldn’t get there in time but she said some prayers after he’d died.
Something happened, I’m not sure if it was just after or just before I got the call about him dying, I honestly don’t recall, but the feeling of connection, of love that I’d felt the at the last visit and the Wednesday before … that was still there and I was kind of praying to him I suppose. This is difficult to explain but basically I was thinking about him really hard in the hope that I could somehow send enough love out through the ether for it to reach him and for him to know where it came from.
As I thought about Dad, and tried to send him love from afar, I had this weird kind of out-of-body. I was looking at the roof of the home he was in, like the satellite picture only it was in much higher definition, receding fast, as if I was flying upwards at speed. There was a sense of freedom and unbelievable joy. In no time, the viewpoint was high above the downs, flying along side of them towards Truleigh Hill. I could see the blue of the sky, the yellow and white of the flowers in the meadows below, I could hear the larks, drink in the sunlit green of the hills and blue of the sea. All the while, my heart was bursting with love and joy at the beauty and wonder of it all, at the sheer delight of existence, of a life well lived, of gratitude at the loveliness of the people surrounding me and the love and happiness I enjoyed, and I was filled with it, too. It was a bit like that feeling you get when you come off the best fairground ride ever and you’re thinking,
‘Blimey! That was a blast. I must do it again.’
Except it was a million times better. It was pretty fucking extraordinary. Because I was sort of feeling it as if it was me, but also feeling it with someone else; their feelings, being shown. And I may be nuts to say this, and I’m definitely laying myself open saying it in a public place but it felt as if, somehow, my efforts to connect to Dad had succeeded, as if those were his last conscious thoughts.
After it was gone, the traffic slowed more and I had to contend with the bell ends in the van behind me who were so close I couldn’t see their headlights. Clearly my decision to leave a 20 yard stopping distance, crying my eyes out as I was, my vision blurry with tears, offended them. But I was unable to stop and blurb properly because you can’t on that bit and I didn’t fancy sitting up the arse of the car in front while visually impaired! I gave them a brakes test and they backed off.
Back in Sussex, the people at the home washed and dressed my dad, and laid him out with a palm cross in his hands. Another act of humanity and love.
Back on the M25 I tried to reimagine the experience I’d just had, the connection, the joy, but I couldn’t make it feel the same. It wasn’t just because you can never quite recreate the impact of something like that a second time, but also because it didn’t feel as if it had come from me. It felt as if it had come into my mind from outside. Maybe those were my father’s last conscious thoughts.
Later, when I returned to register Dad’s death, I went to see his body. All I could think of was that bit in whichever gospel it is when the women go to look in the tomb to embalm Jesus and there’s some bloke is in there who basically says,
‘Why are you looking for him in here among the dead? Fuck off back to where he is; with the living.’
A good death then.
The connection? Still there. Quietly, in the background, giving me strength.
Death Is Nothing At All
Death is nothing at all.
It does not count.
I have only slipped away into the next room.
Nothing has happened.
Everything remains exactly as it was.
I am I, and you are you,
and the old life that we lived so fondly together is untouched, unchanged.
Whatever we were to each other, that we are still.
Call me by the old familiar name.
Speak of me in the easy way which you always used.
Put no difference into your tone.
Wear no forced air of solemnity or sorrow.
Laugh as we always laughed at the little jokes that we enjoyed together.
Play, smile, think of me, pray for me.
Let my name be ever the household word that it always was.
Let it be spoken without an effort, without the ghost of a shadow upon it.
Life means all that it ever meant.
It is the same as it ever was.
There is absolute and unbroken continuity.
What is this death but a negligible accident?
Why should I be out of mind because I am out of sight?
I am but waiting for you, for an interval,
somewhere very near,
just round the corner.
All is well.
Nothing is hurt; nothing is lost.
One brief moment and all will be as it was before.
How we shall laugh at the trouble of parting when we meet again
This poem was read at Dad’s funeral and shortly afterwards, one of the lovely people on my mailing list sent it to me, which rather heartened me as I must be collecting a group of the right kind of people!