Bereavement Dreams

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I keep having the same dream, at least once a fortnight. The setting changes but the main thing is always the same. Dad has died but somehow decided he didn’t like that and came back to life a few days or weeks later. We’re all surprised and delighted and uncomprehending, but mainly delighted. Dad starts working again and goes abroad for work a lot, and then we lose touch with him. He doesn’t call, he doesn’t tell us when he’s going to be back, we go to his house every few days to see if he’s there or if he’s left a message. I worry that he’s died again but abroad and nobody knows who to contact, but mainly we’re just worried and distraught that he’s not in touch, we don’t know where he is and we can’t contact him.

I know it’s my brain trying to process the fact that my dad died and I won’t see him again, which is just really stupid and annoying, but the dreams are awful. I just feel such a longing.

My dad died

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In August, my dad and his partner W went to Jersey for a cycling holiday. They arrived on Saturday 13/08 and almost immediately dad felt unwell. He was tired, constipated, intermittently confused and unsteady on his feet. He spent most of the first few days in bed, too tired and weak to go out, and after a few days W insisted he see a doctor. They went to the hospital and were seen at A&E where the advice was find an Indian restaurant and have a plate of dhal, that’ll clear you out.

Dad fell asleep in the restaurant with his dhal half-eaten.To put it in context, I’d have said there was more chance of dad swimming back to the UK than not finishing his dhal. On Friday 19th, he fell in the bath at the hotel and burst every blood vessel in his eye trying to get back up. W called an ambulance and he was taken back to A&E, and eventually admitted. He was confused again, weak, and overnight developed a right-sided facial droop. He was supposed to be nil by mouth because of the facial droop, but was thirsty and confused and managed to drink two glasses of the purple mouthwash that was left sitting in front of him. I left multiple messages on the ward over the weekend asking to speak to a doctor but nobody called me back and I had to rely on updates from W.

On Monday 22nd dad had a CT scan of his head, and as the images weren’t great, an MRI. On the Tuesday, I finally got to speak to a doctor, who said he’d had no idea I existed, despite the numerous messages I’d left. The doctor said that the scans showed two space-occupying lesions in the left fronto-parietal lobe of dad’s brain. He said that the hospital didn’t have the facilities to do a biopsy and he’d have to be transferred back to the UK. I notified work that I didn’t know when I’d be back and started making arrangements to fly to Jersey. The next day I phoned for an update as I waited to board the plane at Edinburgh, and they told me dad’s SATs had dropped dramatically so he had been moved to ITU for additional respiratory support.

The doctor I’d spoken to had stayed behind after finishing time to speak to me when I arrived, which was really kind of him, and I also spoke to one of the ITU doctors. Dad woke up not long after I arrived, recognised me and was pleased I was there. We discussed dad’s resusc status, and dad confirmed he wanted my brother and I down as his next of kin. W was dealing with dad’s travel insurance to get him flown back to the UK for biopsies and whatever else would be needed. There was the most incredible thunderstorm overhead that night; according to the news there were hundreds of lightning strikes on the island and I’m sure most of them were on the pavement outside my hotel room.

On the Thursday 25/09 dad had a swallowing assessment by the SALT who confirmed he was fine for a soft diet. He was sitting in the chair all morning, less agitated (not pulling out his NG tube), and was on normal flow oxygen instead of high. They did a lumbar puncture because they thought the brain lesions might be inflammatory, and they thought he was well enough to move to a medical bed once one was free. He stayed awake for an hour or so and managed a rational conversation, although the facial droop was affecting his speech. W was still trying to deal with the travel insurance people to get dad back to the UK. The next day, Friday 26th August, they took out dad’s NG tube, he had two breakfasts (very dad) and the physio was doing some walking with him. It didn’t go well, he was very tired, really struggling to walk and got very confused, so they put him back on oxygen. He wasn’t tolerating the mask at all, kept pulling it off, so visiting time was mainly trying to stop him removing it. A chest X-ray confirmed pneumonia, and I’m absolutely convinced it was an aspiration pneumonia caused by swallowing the mouthwash. They put the NG tube back in and put him back as nil by mouth. They said they thought the brain lesions might be myelinitis, which is so rare they really couldn’t answer any questions about it. They’d done the paperwork for the insurance company to arrange the air ambulance.

On the Saturday W had to fly back to the UK as she has a teenage daughter who has Down’s, and she couldn’t stay away any longer. So it was just me and dad in Jersey. I got into a routine very quickly, waking late, going into St Helier for brunch, sitting in the sun and feeding the sparrows, then heading up to the hospital for 1400. Visiting hours were officially 1400-1600 and 1800-2000 but they fairly quickly stopped kicking me out at 1600, and I was there most days from 1400 to almost 2100 sometimes. I’ll never forget how kind that was of them to allow me so much time. And after I left each evening I had to do a load of phone calls, texts and whatsapps to update the family and dad’s friends. It was so hard and so exhausting. Dad went into AF that day and they gave him an echo. He wasn’t tolerating the NG tube at all, kept pulling it out even though they’d passed it around the back of his nose and put a stitch to keep it in. He managed to get it out without breaking the stitch, which they said was pretty impressive. He also managed to get his TED stockings off, even though he had multiple cannulas in his feet. I did spend a lot of visiting time trying to stop him pulling things out. We used the ward iPad a lot to play music for him – the Stones, Aretha, Joe Cocker, all the things he loved.

W was still trying to get the insurance company to fly dad back. I’m not going to name the company here because we have a formal complaint submitted, but they were shit, shit, shit all the way through. They lied, prevaricated, delayed and were generally incompetent and frustrating. Things stayed much the same with dad over the next few days, no real change. Then on Tuesday 30th, when I arrived in the afternoon, dad was sitting out in a chair and they said he’d been up since about 1000. I said hi, got him his phone, and he couldn’t use it. Just vaguely waved his fingers over the screen with no clear idea of what to do. I gave him the white board and pen he’d been using to write on, and he just held the pen loosely, couldn’t grip it properly, couldn’t write, just vague movements with the pen. He looked me in the eyes and I can’t describe the expression he had, it was like terror and understanding and love and confusion all at once. I told the nurses I thought something was happening, asked them to get him into bed and asked them to call the doctors to arrange a scan because I was sure something neuro was happening. They used the Sara Steady to get him back into bed and he managed to follow their instructions, and that was the last time he was able to. On the Thursday, 01/09, they said he wasn’t able to protect his airway any more and they put him into an induced coma and intubated him. I’m utterly convinced something neuro happened on the Tuesday, but the subsequent scans didn’t show any changes. And the travel insurance company were still unhelpful.

Dad remained in the induced coma for four or five days and then they started to reduce the sedation, but he didn’t wake up. He wriggled a bit, turned his head sometimes, sometimes shrugged his shoulders, but I don’t think more than 20% was purposeful. I was still in Jersey with him, telling him to wake up because Liz Truss was prime minister and somebody needed to do something about, then telling him to wake up because the Queen died. The doctors told me they thought he might have lymphoma in his brain, which at best has a 30% survival rate at 5 years. And then on Friday 9th they said they didn’t think he was going to wake up. His brain function wasn’t recovering and they thought all they could do was get him to a hospital at home, switch the ventilator off, and wait. I was in the relative’s room with a doctor (who at first thought I was dad’s partner and was incredibly embarrassed by his mistake while I was roaring laughing) and a nurse, while they told me this, and then I had to go back to the hotel alone and make the phone calls.

Jersey were obviously as pissed off as we were with the useless travel insurance, because on the Saturday they’d managed to get hold of their own air ambulance and a nurse and a doctor very kindly volunteered to work on a day off to get dad home. I was with him in the ward as they got him onto the stretcher, and in the ambulance with them to the airport. I watched them load him into the plane and taxi off, and then I went to the main terminal and got myself back to Edinburgh. I stayed in Edinburgh on the Sunday, slept, did washing etc, and went down to Yorkshire on the Monday. There was no change, but at least I had my mum and my brother and W to share the load with.

The hospital arranged for reviews by oncology, neurology, haematology and anaesthetics. They said there were no lesions in his brain showing on the new scans, but an EEG showed moderate-severe dysfunction over both hemispheres of his brain. He had ventriculomegaly and extensive attentuation of the periventricular white matter. They told us again that they thought he wasn’t going to wake up, but arranged for another review by another separate set of doctors. On Friday 16th September we went in to talk to the doctors again and they confirmed that they were all of the same opinion, dad wasn’t going to wake up and the best thing we could do for him was let him go.

We had his family around him – me, my brother, our mum, W, dad’s brother and his wife, their kids, dad’s other niece and nephews. We spent a few hours at his bedside, and then at around 3pm we told the staff we were ready. They turned the monitors off wihtin the room, and asked if we wanted to stay or leave as they extubated him. Some of us left, but I stayed. I felt very strongly that I’d been there all the way through and couldn’t leave him now. The ventilation was removed and the rest of us came back in. We sat around him, holding his hand and talking to him, I remember telling him we were all there and we loved him and it was ok for him to go. I put my phone on his pillow and played Aretha’s greatest hits. The nurses had asked if he had a favourite smell that we might want to put next to him, but as they didn’t have any jet fuel or kerosene, we didn’t bother. About fifteen minutes after the extubation dad’s breathing became quite gaspy, which was horribly distressing. The nurses came in and gave him two injections of “strong painkillers” and his breathing calmed and slowed. And at around 1540, as Aretha sang Bridge Over Troubled Water, one of his breaths was his last breath. He just stopped and was gone.

I can’t describe how much I loved my dad. I feel like Lyra felt when Pan was wrenched out of her. The grief is like the sea. It ebbs and flows and every so often a huge wave of it envelops me and it’s the only thing I know. Every Friday afternoon, I relive it. This is when they extubated, this is when they gave him morphine, this is when he died, how can my dad be dead? It would have been his birthday next week.

The care dad got in the two ITUs was exemplary and the staff were incredibly kind. I can’t thank them enough. The travel insurance company, however, can get in the sea.

Per ardua ad astra, dad.

Nails

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I never used to have such brittle nails, but in recent years they’ve done nothing but split, crack and (often painfully) break. I’ve tried strengthening coats, biotin supplements, B complex supplements, omega supplements, CND Rescue Rx oil, more strengthening coats … Nothing has worked.

I recently stumbled upon Bliss Kiss Simply Pure nail oil and decided to give it a go. The product is being shipped from the US so it could take a while to get here. The creator of the Simply Pure nail oil has kindly listed the ingredients on the site. In the meantime, I’m trying pure jojoba oil, applying it to my nails, rubbing it in, waiting until the nails have soaked up all the oil and feel dry rather than oily, then doing it again. Just now, it takes about five minutes for my nails to absorb it all and feel dry.

This is the state of my nails after two days of jojoba oil. Today is 07/08/2020.

You can see they look dry, they’re split and peeling, and the right thumbnail is torn right down to the quick.

12/08 I did frequent coats of jojoba oil, as above, for four days. Then I got hold of some applicator pens and filled them with jojoba oil, vitamin E gel and plant squalane. I cleaned my nails, applied a base coat, and have continued to apply the treatment multiple times per day. This is my nails today. I don’t see any improvement so far.

Today is 17/08, so ten days into the jojoba oil treatments. I removed the base coat a few days ago and have been doing multiple, frequent treatment applications. My nails are still dry and absorb the oil very quickly, but I think they are looking a bit better (the hairy background is in fact my cat).

The order from Bliss Kiss is held at the sorting office because there was a £12.71 customs charge, but I paid that today, so with any luck it will arrive in the next couple of days. I will switch to the Simply Pure when it arrives, and continue to update this post.

23/08/20

The Bliss Kiss package arrived on the 19th. I’ve been doing the same – painting my nails and the surrounding skin multiple times per day. The photos below are my nails today. Next, Bliss Kiss recommend cleaning the nails with alcohol and painting them with a good base coat. They specify a base coat rather than a base/top coat because base coats are formulated to stick to the nail surface. I will also keep applying the oil several times a day.

They are looking better aren’t they?

07/09/2020 Things have gone a bit tits up since the above.I applied another base coat, then got carried away and applied a couple of coats of my current favourite nail polish, Camo by Revolution Beauty. Like all the nail polishes I’ve ever tried, including gel manicures, it was chipped at the ends within 24 hours. I left it all on for a week though, so as not to dry my nails with remover. Once I’d removed it, my nails weren’t great – flaky and chipped at the ends and they were breaking very easily, especially as I assembled a new cat tree, and spent a weekend doing a big batch cook with my hands in and out of water. I kept oiling my nails and about a week ago applied another base coat, which I removed yesterday.

I don’t think my nails like being painted, even if it’s just with a base coat. They look healthy enough when it’s on, but when I take it off, the ends are split and peeling, and they break. Or maybe they’re ok with the base coat but react badly to the remover. I dunno. Anyway, my nails are bare just now and I’m back to frequent multiple oilings.

14/09/2020

I think my pattern for the next wee while will be wearing a base coat through the week, with regular oilings, and remove it at the weekend for frequent oiiing. Ideally I’d like to get to a point that my nails can survive without a base coat. To that end, I’ve been reading a bit about the benefits of dietary sulphur for the hair and nails, such as this article. I’m going to try sulphur supplements (MSM) and see if that helps.

20/10/2020 A couple of months if oil treatment and base coat, and a month of sulphur supplements, and they are definitely looking better (the gloss is base coat).