Walking Lewis Home: Part 2
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Walking Lewis Home: Part 2
How one man will die in 2035
If you missed part 1, you can read the first half of Lewis’ story here.
I pick up these entries, at a time when Lewis has been slowly declining. He has begun to face some more existential issues around being so ill, but this hasn’t shifted how we experiences things too much. As he exceeds his prognosis ‘deadline’, his vicarious fishing trip with his boys remains a high point.
Friday 15 August, 2035
During a visit, I pick up on the uncertainty about Lewis’ time left and I gently offer up the possibility to him that we could allay some of these anxieties by discussing and making some decisions around an Advance Care Plan.
He feels he wants some certainty, but isn’t sure if he likes the topics and scenarios around a lot of it. I offer to reframe some of these decisions about not what it denies, but what it affords: to make things easier for wife and children if he can't decide for himself; to give him some reassurance that there is some control to be had, even at the stage of his diagnosis.
He agrees, and we walk through the various types of plans: advance care plans, advance directives, DNACPRs, ADRTs. He doesn’t respond well to the more clinical ones as it reminds him of his illness, but when I outline the more holistic aspects, covering what he’d like around him, his preferences for care more generally, he is more amenable. I use this as a starting off point and capture everything through my watch and glasses which record and annotate his decisions, and leave it open whether other decisions are useful to him later.
He talks about what matters most to him: being pain free; being surrounded by his family, not being too much of a burden. We capture his voice, his sentiment through my recordings, which are sent to his GP and solicitor for confirmation, quietly in the background. I’m confident that when the time comes, his decisions will be respected. He is glad about this, but still remains avoidant on talking about his disease progression. The conversation gets a bit stuck this way, which is something I struggle with: I don’t want to push him but know how important it can be to face a bit of reality. But in conversation with his wife he is very clear: he wants to die at home whatever happens. For me, it seems that the planning process for him is too much, it's too black and white for him. So I’m glad he has just a little movement in other ways by discussing with his wife.
Thursday 21 August, 2035
In his last few weeks, he gets determined: he wants to go fishing one last time.
We try, but for them it is hard to manage the pain for the whole day. In the end, we decide to drive upstream along the Thames to a spot he knows. Through the local hospice I’ve organised a short loan of a powered exoskeleton to help him walk and participate with his family. It makes all the difference. He is really happy to be out of the city, in the fresh air, hearing the sound of the river. It was a short trip but it clearly meant everything to him.
The pain gets worse in the next few days. When I visit, I find he is talking less. To me, he seems to be beginning to decline. However, following our trip, and remembering his experiences growing up in the countryside, I make an effort to make bouquets of wild grasses for his room. They feel like a bit of the river in the house, and I can tell it perks him up a bit.
I connect with his wife and children a bit more, try to ensure they are involved as much as they want/feel like. Checking in with their emotional state, seeing what their understanding of the progression is, gently seeing if they have any questions for me. They have one or two, but are focused on keeping him comfortable. They appreciate his disease more than he does in a way, and have a better understanding. His wife has been speaking to her circle of friends online, as much as it is difficult for her. She was prescribed a private community when Lewis’ diagnosis was confirmed, and its been an important part of her life since then. With the more clinical questions, I relay more in-depth queries to Lewis’ palliative care team, and offer to be there when they are so I can support her in person. I know from experience that nothing can replace just being in a room with people.
Wednesday 27 August, 2035
Lewis declines over the week. He is now totally immobile, and doesn’t leave the bed. His wife is helping with pads, hydration and everything else. The new hospital bed they’ve got has eliminated bed sores, which is a relief. It used to be a 2-man job, but its taken care of now. He groans with pain between doses of medications when there are gaps in the pain relief, and soon stops swallowing. When she is at a bit of a loss of what to do, but wants to care for Lewis, I suggest some gentle massage and touching on his hands, feet, arms and legs.
In time, additional pain relief is needed, remotely administered by the DNs and palliative care teams back at the hospital. His wife is glad, in a way, not to have to do anymore than she is asked of already - she does a lot - but I make sure she has someone to speak to about it. She talks about how tired she is, and surreal to watch him change like this. She talks to him normally, knowing that he can hear her and enjoy her presence. She is comforted by her two sons. I can sense the shift in dynamic as Lewis becomes more immobile, static in the bed. I reassure her that she is doing everything really well, and enabling him the experience he was really keen on. I think she takes a lot from that.
Thursday 28 August, 2035
Entering this last period, I explain everything that goes on, once they decide they’d like to know what to expect. Physical changes, without prescribing times to them, so they can expect things to move fast or slow, depending on how Lewis is.
I recollect a conversation Lewis and I had in the car about being at the river, about the sounds of fishing that he misses. With that in mind, I get my mini-speaker and with the family's permission, I play some recordings of river sounds. I know for myself, this is something very important and I suspect it will help Lewis too. It seems to relax him. They sit around him, with the gentle gurgling of water filling the room. It creates a calmness I think they needed.
The visiting district nurses and palliative care team provide the pain relief he needs. He doesn’t suffer too much in between. The room takes on a heavy quietness. I just sit with him, hearing him breathing. It's very peaceful, not solemn but I am aware of something important happening. His sons can be a bit wary now but I try and put them at ease, and after a while they recognise they don’t have to do very much: just being with him is the most important thing. This is the last time I see Lewis alive. He is very still, sleeping almost all the time, with slow breathing. He has lost a lot of weight, he looks close to death.
Saturday 30 August, 2035
Lewis dies 18 hours later. It happened very early that morning that I was not there, but they asked me to visit.
I sit with him and his family when I arrive. They’ve had some time already with him to get over the immediate shock, and are sitting and being with him calmly. His wife talks about some remorse about how much pain he was in, but her relief that they got to try and keep his spirits up and focused on what he loved in life: being with them, being back in nature.
Knowing he had 6 months, and that he went nearly a month beyond, gives his family a lot of comfort. They see it as unexpected, extra time to be with him. A gift.
It feels like Lewis’ wife is in a better position to handle things. I help with some basic information about taking care of his body while he is at home, what they should feel free to do if they want to (I talked about giving him a wash), and first steps around contacting the funeral director and registering his death within 5 days. Lewis wasn’t religious so I knew he struggled a bit when considering things like this, but through a conversation he expressed the wish to be cremated and his ashes spread in his favourite river. I tell them, it's possible to do this. She feels able to do the rest herself, knowing it will keep her busy, and her mind off things. I suggest checking in with her and the children in 3 weeks, to see how they are. They agree.
Sunday 21 September, 2035
I visit 3 weeks later. Lewis’ wife found the admin quite taxing in the end, but just due to the dispassionate ‘HR’ nature of it. Nevertheless, the government digital services automatically collated everything together so all she really needed to do was find his ID, and all the paperwork and accounts were automatically closed or transferred to her name.
The children are very sad but I feel they have something to relate to him with. I suspect they’ll form some rituals or remembrances around fishing in his memory. I tell them how Lewis felt on the trip to the river, and that gives them some comfort. I think it helps to have someone else who knows him in these last stages, and can bring him back in the room for a moment. I suggest a few things to guide doing some things that may help with their mourning, especially as the funeral comes up. They are happy to hear it, and it's not important whether they do it or not, I think. More having some sort of structure or ideas has helped remove a bit of the mystery.
I leave by telling them I’ll see them at the funeral, and that I’m always around to talk about Lewis, as someone who was there with them along in this final part of his journey. They seem relieved and they say they were glad I was there with them.