The Toughest Few Months

When we got back from our month in Nerja earlier this year, we said we’d probably go quiet for a while as we got Zagan ready for some Spring trips and returned to our normal lives. Sadly, the last few months turned out to be anything but normal. We’ve ended up trying to cling to some sort of normality, while riding a wave of grief.

A few short hours after we arrived home from Nerja, I got a call from my Mum’s care home to say she was very poorly with a sickness and diarrhoea bug. I headed straight over to see her and met with the out of hours doctor. Due to Mum’s advanced dementia my brother and I have been her Power of Attorneys for several years – making both financial and health decisions on her behalf. If you don’t have a Power of Attorney in place for yourself or your parents, please stop reading now and do it – you don’t need a solicitor, you can do it all yourself at https://www.gov.uk/power-of-attorney. I hope you’ll never need to use it, but if you do, you’ll know what a godsend it is.

My brother lives in Spain, so our PoA is set up to allow either one of us to make decisions independantly. I was unable to get hold of him that night, so after a long discussion with the doctor, I made the heart-breaking decision that Mum would not go to hospital and that she should be made comfortable in her own room at the care home. I was signing her death warrant. My heart said I was doing the right thing, but my head kept telling me I had betrayed her, needless to say I’ve struggled to sleep since then.

[Additional info from Jay: for perspective this was at the end of many years of Judith being seriously ill with dementia with repeated falls and infections, each of which left her more frail and confused. We knew she did not cope well with hospital stays, to say the least, from prevous stays where Ju had to be with her 27-4 for days to prevent her endlesslessy removing cannulas and oxygen feeds. In NHS A&E that means trying to sleep on the floor by the bed. There was also a longstanding prior agreement within the family that Judith wouldn’t be taken to hospital in the event of a new infection or fall.]

With anti-sickness medication, over a couple of days Mum got a bit better and was able to keep down water and some food. Once we knew the bug wasn’t a contagious infection, my Dad was able to see her again (I couldn’t have coped if he had caught it too). Then, the roller-coaster of emotion really began.

After a couple of days Mum took a turn for the worse. I ended up sat with another doctor discussing end of life care as she lay in her bed unresponsive. He updated Mum’s RESPECT form to say she shouldn’t be transferred to hospital under any circumstances and arranged for the drugs needed to be delivered to the care home. [Edit from Jay: this form should have been updated long before this point, it was a string of administrative oversights which meant it wasn’t.]

As soon as the doctor left tears rolled down my face and miraculously Mum perked up again. Soon she was sitting up, sipping water and eating the yoghurt I fed her. A few days later she was well enough to be out of bed, watching TV in the communual lounge and eating chocolates, albeit in a wheelchair because she was still too weak to walk. Of course with her dementia she forgot that she couldn’t walk, so when she tried to get out of bed in the night to go to the loo, she fell and banged her head. Paramedics were called, but thankfully the RESPECT form meant they were aware that she was ‘not for hospital’ when they called me to discuss what was happening.

A motion sensor was added to Mum’s room to alert the care home staff if she tried to get up in the night, and things were OK for a couple of weeks. Then at the start of March she got poorly again, this time with sickness and a chest infection. Several more doctors, and a load of antibiotics didn’t help. Mum had pneumonia and was too frail to fight it. Soon the District Nurses were coming in the discuss palliative care with me, Mum was on her ‘end of life pathway’ as they called it.

On the Monday I took Dad over to see Mum and tried to prepare him for the worst so he could say goodbye, but he didn’t really understand what was going on, and kept saying she’ll get better. That Monday it did seem possible, she was still in bed, but talking her usual dementia gibberish. I took the last photo of Mum and Dad together that day, and as I showed her the photo she screwed up her face in a big smile and told me she loved me. I’ll never forget that and wished I’d caught it on camera, instead I just got her waving her arms about and chatting away to herself.

WARNING – I was woefully unprepared for the dying process, and from speaking to others who have been in the same situation, they were too. I’ve written this for anyone who has a friend of relative who is facing the dying process, as I hope reading what I witnessed might help you to mentally prepare. If you don’t want to know about what happens when someone dies, as it’s not at all like you see on TV, then please feel free to skip ahead to the photo of Mum and me wearing our spotted ‘King of the Mountains’ tops.

A few days later I got the call I’d been dreading – Mum’s breathing had changed and we needed to get over to see her. Jay and I rushed over to her care home and were comforted to see a member of the care home staff sitting at her bedside. Mum looked so tiny and frail slumped in her bed. The staff left us alone and I held Mum’s hand and cried. I told her we would all be OK and that her work was done here, she could rest now. Then she stopped breathing. I looked at Jay, he looked at me and before the flood of tears could fall, she gasped in another breath. This went on for several hours and I’m ashamed to say that by 9pm I couldn’t be there anymore.

As one of the ladies said she needed to change Mum before going off shift, I offered to wait outside. She asked if we were coming back. I was confused, and told her I really didn’t know what I was supposed to do. She said we didn’t need to stay, but they could do with knowing which funeral home we wanted to use. I grabbed at the opportunity to get out of there – it was awful watching my Mum go through that. The coward in me used the funeral home as an excuse to leave, go home and try to get some sleep. Of course I couldn’t sleep. After picking a funeral home and giving the details to the care home, I lay in bed all night feeling guilty for leaving Mum on her own when she needed me, and waiting for the phone to ring to tell me she had died.

The next morning Mum I called the care home, Mum was still hanging on in there, but I didn’t have the strength to see her like that again. I arranged a taxi to take my Dad to see her, so he could say goodbye. He stayed for several hours that day, and Mum hung on for several more days, her fingers and toes turning black as the circulation in them slowed.

Jay and I visited her again one evening after Dad had gone home, more hours of her stopping breathing and starting again. As the sedative she was on started to wear off she would get agitated – moaning, hallucinating and reaching out to something on the ceiling, wailing and crying. I felt useless, all I could do was hold her hand and wait for the District Nurses to arrive and administer more sedative. It was horrible to witness, I just wanted to ask them to give her extra morphine and put her out of her misery, but unlike out beloved pets, we humans have to suffer in death.

After a few days my Dad told me he couldn’t see her like that anymore. He’s not one to show emotion, but I could see how badly it was affecting him. I told him that it was OK to not go anymore. We’d all said goodbye to Mum and she was being really well looked after. That night around 10pm I got a call to say Mum might have passed away. They couldn’t say for certain as they were waiting on the District Nurses to confirm it, but she had stopped breathing for the final time about half an hour before.

I called my brother and sobbed down the phone to him, I couldn’t say the words, but he knew what I meant. I didn’t tell my Dad, I couldn’t do that to him over the phone, but it was too late to go over to his house. I spent the night lying awake working out how to tell him the love of his life was gone. It was one of the hardest things I’ve ever had to do, and while he looked heart-broken, he took it really well.

The next week was a whirl of sleeplessness and admin. Chasing up doctors and coroners so I could get an appointment to get Mum’s death certificate – without that we couldn’t set a date for her funeral and my brother couldn’t book his flights to come back for it. Months ago, before all this started, we’d booked a week away with friends over the Easter break. Having that deadline helped me to focus.

I managed to get the funeral arrangements in place, invitations sent to everyone I could think of, as well as a notification on the local village Facebook group, and several visits to Dad to ensure he was OK and had everything he needed. I probably wasn’t the best of company for that week away, but my friends didn’t let on and the change of scenery was the best thing I could have done.

After a quick stop off in Cornwall to catch up with Phil and Jules who we toured Morocco with back in 2017, we met up with our friends at a cottage in Bantham in Devon.

I’d never heard of the place, but what a magical corner of the world it is. At the end of our road was a huge beach, with coast walks and, of course, a Parkrun nearby. While walking on the tidal beach causeway to Burgh Island on the Wednesday afternoon I got a phone call to say my Dad had had a fall.

We don’t know what happened, but Dad was found lying in the road in his village, the police called my brother using the emergency contacts and medical information I’d set up on Dad’s iphone as Dad didn’t have any ID on him. My brother was asked if either of us could go with him to hospital, but as I was over 5 hours drive away and my brother was in Spain, he had to go on his own.

I called the hospital for an update, but was told he was waiting to be seen. Having been to the same hospital so many times with Mum, I knew that could take hours, so we stayed put and called again in the morning hoping they’d say he was a bit bruised and able to go home. However, the news was very different, Dad had broken his back, so we said a quick goodbye to our friends and drove back to Nottingham.

We found Dad on a trolly bed in the corridor, which is officially a bed space in the overcrowded A&E at the Queen’s Medical Centre. I couldn’t find any staff to tell me what was happening, so after an hour with Dad, who was high as a kite on painkillers, and constantly having to stand to move the chair I was on so trollies could be wheeled past, we headed home. I phoned the hospital for updates, as it seemed the easiest was to get any information, and they told me he was being admitted and waiting for a bed on a ward.

After a couple of days Dad got moved to a bed on a ward, during which time they discovered he hadn’t broken his back – what they’d seen was an old break, one that none of us knew anything about. When it became clear Dad would be in hospital for some time, my brother and I made the tough decision to go ahead with Mum’s funeral. We cancelled the wake and let everyone know that instead we’d have a gathering with all their friends once Dad is out of hospital – perhaps after we’ve scattered Mum’s ashes as Dad seemed to know where he wanted to scatter them, but he has Aphasia which has affected his commuication so wasn’t able to tell me.

Mum’s funeral was the hardest day. The service was lovely and uplifting – just how she would have wanted it. My brother had liaised with a celebrant who told stories of Mum’s life, as neither of us would have been able to hold it together to do a speech. Lots more people than we knew came and said really nice things about Mum. Afterwards Jay and I, my brother and his wife, and my nephew and his wife had a couple of drinks together, before I had to go home and crash – I was exhausted.

Dad’s now been in hospital for six weeks, and it’s not getting any easier. He’s getting progressively worse. When he was admitted he had delerium and wasn’t making any sense. Since then chest infections are making him confused and he’s hardly got out of bed since his fall. When he first went into hospital he could feed himself, but now he can’t manage that. My heart aches as I watch him hover his spoon over his food and put it into his mounth empty. I make sure my visits are around lunchtime so I can feed him as he still loves his ice cream. This is a man who before his fall was walking several miles a day and living in his own home with carers just once a day to make his evening meal. It’s heartbreaking to see. It feels like since Mum has gone, he has given up.

A few days after her funeral I collected Mum’s ashes from the crematorium and sat sobbing in their car park. I was taking Mum on her last journey back to my childhood home, where she and Dad lived for over 50 years. I didn’t know what to do with her when I got her home, so she’s currently in a box in the bottom of her wardrobe until we know what’s happening with Dad.

I’m not sure I’ve been able to grieve properly for Mum yet, all my focus is on Dad. We aren’t making any plans for the future right now as it feels like my whole life has been tipped upside down, so we’re just taking everything one day at a time.

Back in 2014 when I was diagnosed with anxiety and depression I found that reading about it really helped. With everything going on I’ve felt the tightness in my chest and the low mood return over these past few months, so I’ve gone back to reading. After finishing The Secret of Secrets by Dan Brown – which probably wasn’t a good thing to read in the days Mum was passing away – I’ve since finished When Life’s Not Peachy by Pip Lincolne which gave me lots of think about. One thing she found helpful was writing things down, so I grabbed an old journal and when everything was getting too much I just wrote, whatever came into my head. I found that really cathartic as it stopped those same thoughts from rolling around in my head all the time.

Other coping strategies I learned back in 2014 have also been used. Jay and I are making a point of talking to each other a lot. Not just about what is happening, but about our feelings. When things get tough I shut down, and I hadn’t realised I was doing that until Jay and I talked about it. I’m now leaning on him for support as I try to get through this.We’re also trying to get out in nature as much as possible for walks and running which I know helps to keep me sane. My friends and members of our local running club have been very supportive and I know my brother is always just a phone call away.

These past few months I’ve come to really appreciate what our financial freedom means. When we started our ‘crazy life experiment’ back in 2017, our goal financial freedom to travel and do whatever we wanted to, over the last few years it’s been the freedom to be there for my parents when they need me. I have no idea how anyone would be able to get through something like this while trying to hold down a full-time job.

Dad is going to be in some sort of hospital for at least another month as they try to assess his care needs going forward. I’m really struggling with my mental health, and some days to just function, so Jay and I have booked a week away in a cottage in Wales (as we figure we can get back from there quickly if we need to). I’m hoping a change of scene will help again, and this time we won’t have to cut it short.

Ju x