Another Tough Few Months.

Our blog posts have been infrequent this year as life has been very challenging of late. When I last wrote on here my Mum had just passed away and my Dad was in hospital following a fall. Knowing he’d be there for a while, was safe and looked after, Jay and I grabbed the chance for a week away in a converted barn in Nefyn on the Lynn Peninsular in Wales. I was really struggling with everything that had happened over the previous few months, and that break was very much needed.

The cottage was a bit remote, but with a stunning view of the sea. We spent our days reading, relaxing, walking and healing. It is such a beautiful corner of the world that we’d never been to before.

While we were there, we flew on the amazingly scary Zip World – it seemed so much more organised that the Fantasticable Zip Wire we did in France a few years back.

When we got back Dad continued to deteriorate, a bout of ‘hospital acquired pneumonia’ really set him back. Finally after seven weeks in hospital he was transferred to a rehabilitation hospital on the other side of Nottingham. A few days after he arrived there, they made it clear he wouldn’t be returning home.

My Mum and Dad lived in the same house for over 50 years, and to say it was full would be an understatement. So Jay and I set about emptying the house. We started with the attic as we thought if Dad made a miracle recovery, he could still move back in and not know we’d emptied the attic as he never went up there.

Slowly it dawned that there would be no miracle recovery, so over the next few weeks we filled all the local charity shops, did several runs to the tip, had a charity come to collect any good furniture, then finally when I was mentally exhausted by it all, I paid a house clearer to take the rest.

Whenever I visited Dad in the hospital, he was always in bed, so I was so happy to see him out of bed and sitting in a chair (a first for months), until I was told he had been hoisted out of bed into the chair. Still, he did look happier sitting up and watching a movie on TV.

I took him a CD discman, headphones and a selection of his CD’s – Dad loved music – and he’d sit there with a big smile on his face, clicking his fingers, shuffling his feet and sometimes singing along. Apologies to everyone who shared a ward with him.

After a couple of months there was a meeting to discuss Dad’s continuing healthcare needs. Here I had to sit and listen to the nurses and people from social services discuss in detail his day to day needs. It’s at this point I realised just how poorly he was. I already knew that following that meeting Dad would be discharged from the rehab hospital as they were unable to help him any further, so I needed to find a care home for him.

His care needs were sufficient for some nursing funding towards the cost of the care home. In just three months he had gone from someone who walked several miles a day, caught two buses each way to visit Mum at her care home and kept his house in good order with a carer just once a day, to someone who could no longer walk, turnover in bed, feed himself or go to the loo.

I’m not sure what would have needed to happen for him to qualify for full funding, hopefully I’ll never have to find out. Fortunately Dad had been a canny Scott, the family motto being ‘every penny’s a prisoner’ gives you an idea of his ethos. He had enough money saved for me to be able to choose a home for him without worrying about the cost.

If you are ever in the situation where you need to find a care home for your loved ones, I really do sympathise with you. It is so hard. You get no support or guidance. I used the carehome.co.uk website which allows you to select the care requirements in your chosen area. I opted to bring Dad closer to where I live as I knew he wouldn’t be going out and about anymore. Jay and I viewed several homes, and although it’s tough, you really need to do this as they vary A LOT. We finally found one that would be perfect for Dad. The only problem was they had no room for him.

So began a waiting game, hoping Dad would be able to stay in the hospital long enough for a space to become free. While knowing what was required for a space to become available in a care home, and not wanting to wish that one anyone. After a week the hospital said we had to move Dad, so I opted for my second choice care home on a short-term ‘respite’ contract, so I could move him once a space became free at our favourite one.

Once Dad was comfortable in the care home, surrounded by pictures of him and Mum and his own telly to watch his favourite music videos on YouTube, Jay and I decided it was time to see if Zagan the motorhome still worked. He’d been in storage since August last year, so the first job was a thorough clean, then a quick test of his systems. Unfortunately once again his fridge was playing up on gas – either not lighting or not staying lit. We’ve had this ongoing issue since 2020, so we knew how to get around it.

Instead of our planned stay on the Temporary Holiday Site at Carsington Water, we booked into a nearby campsite. Sure it was more than double the price, but it meant we were still be able to get away and use the fridge on electric hook-up. Zagan was booked into the repair shop for our return.

As Carsington is only an hour from home, I drove our car while Jay followed in Zagan. That way we would be able to get home quickly for Dad if needed. So for a week Zagan acted like a caravan, parked up and not moving while we explored the local area in the car in between waves of heat. We also took part in a local league race for our running club, and it was great to be able to walk from the campsite to the start of the race.

We got back home on the Sunday and I popped into the care home to see how Dad was doing. He was sitting up in bed smiling because he was pleased to see me. Then his face dropped as he looked at me, pointing to his head he simply said ‘it’s gone’, with a tear in his eye. Mum’s dementia was kind to her, she didn’t know it was happening and lived in a happy childhood world for the last few years. Sadly, Dad knew what was happening to him and he didn’t like it.

A couple of days later the care home called to say Dad wasn’t very well. He hadn’t been eating or drinking and they were waiting for an out of hours doctor to see him. We rushed over to find him lying in bed. We thought he was asleep, but when the doctor called several hours later she informed us he was unconscious. It was time for the hardest of conversations again.

The doctor told me because Dad was unconscious she couldn’t administer any medication, so he would have to go into hospital. He’d only been out of there for two weeks, and on his previous visit he had to spend days in a corridor waiting for a bed on a ward. I couldn’t send him back to that. I explained to the doctor what had happened to Dad since Mum passed away and how she had been his reason for carrying on. Then she made me say that as his Power of Attorney I didn’t want him to go in to hospital, no treatment should be administered, and I understood the consquences of that. I just wanted him kept comfortable and somewhere dignified for the little time he had left.

I spoke to Dad’s GP the following morning to update his Respect Form (this sets out a person’s wishes and is availble to doctors, ambulance staff etc), so that everyone knew he wasn’t to go to hospital. She kindly told me that she thought I’d made the right decision. It was such a relief to hear that, as in my heart I knew I had made the right choice for Dad, but my head kept second guessing and telling me it was wrong.

Two days later the care home called to say Dad’s breathing had changed. Unsure what this meant, as Mum’s changed several days before she passed away, we went to the care home to find out. We got to his room and his breathing was much shallower than before.

I put his favourite ELO concert on the TV – he and Mum used to watch it all the time when her dementia meant she couldn’t follow TV shows – and held his hand. I told him we were all OK and that he could go and be with Mum, and then he simply stopped breathing. I kept expecting him to start up again like Mum did, but I think he wanted to go. I bent down and thanked him for waiting for me to get there.

The care home nurse who called me arrived a couple of minutes later. I told her I thought he might have passed, and she asked if I had been there. My initial thought was that she might have thought I’d smothered him or something to help him on his way, but in reality she was just checking I’d made it in time to be with him. Clearly my head was all over the place.

Jay and I sat in the room with Dad for a few minutes, still expecting his chest to rise, but in time his hands started to turn cold. I went through his wardrobe and laid out some clothes for him to go the funeral home with, and then we went home to process everything and cry a lot.

Dad passed away just 123 days after Mum, and when I tell people they often reply that it happens a lot. Chatting with the medical examiner as we discussed his cause of death, I explained what had happened and she said she truly believed that you can die of a broken heart, but unfortunately it’s not a medical reason, so couldn’t go on his death certificate.

Having so recently gone through the process of registering Mum’s death, I knew nothing would happen for at least a week. So we packed up Zagan, with his newly repaired fridge, and headed to our happy place of Whitby for some healing.

Our long-time motorhome friends Richard and Jenny met us there, and we parked up side by side on the Whitby school playing field – another Temporary Holiday Site. The change of scenery and great company helped me to process everything and put stuff into perspective.

Over the last eight years my parents have needed more and more support from me. I didn’t really notice it at first, and I’m grateful I was in the position to be able to provide it. But now they are gone, and I don’t know what to do with myself. The next few months will be filled with admin, sorting their estates and selling their house, but then I’m not sure what.

It was only when my phone rang the other day did it hit me. It’s not going to be Dad needing something, or the care home to say Mum has fallen. When my phone rings now, it’s probably just going to be a scam call. I don’t have to arrange food deliveries or feel guilty driving past Mum’s care home and not going in. In some ways I do feel a little bit lighter, but in other ways I also feel torn apart. Jay has been amazing, by my side whenever I need him and somehow he just knows when the tears are going to fall – which is why I’m writing this post while he is out. (He’s just come back and seen me sitting on the sofa looking sad, he said he’d had a flashback to all the times this happened in the past – it’s been a tough old time for both of us).

Last week we held Dad’s funeral, we even managed to get the same celebrant who spoke at Mum’s, which was lovely as she could bring the two of them together. This time we held a wake for both of them (we cancelled Mum’s wake after Dad’s fall) in their local pub, which lots of photos on a screen of them in fancy dress in that pub, or on holiday and just enjoying life. It was a reminder that is what we should be doing. So we will. I just need to find my feet first as it feels like my world has been turned upside down.

Ju x