My Father died in a nursing home recently. He was fully compus mentus, and a good and intelligent man. Who was distressed at lack of respect. The last time I saw him was 18 months ago, just before the Pandemic started. He himself was just starting to get on with life a bit after my Mother had died, and was living alone. He refused to let me go and stay with him during the first lockdown (I live at a distance) as he’d had a letter saying he shouldn’t let anyone in the house (even though I said it’s ok for care). He was doing really well and we had calls every day, but he began struggling coping physically and ended up going downhill, just as the lockdown was ended. Long story short he had various health issues and kidney issues and missed appointments due to the pandemic. At the point he wanted me to go and stay. And I couldn’t get there. I didn’t have transport - a great distance away. I tried to hire a car but during the first lockdown car hire wasn’t permitted and they were closed. My sister was working and didn’t want to give up work to stay with him. She moved him to her house suddenly and he hurt his back and insisted on being taken home again. Didn’t like being away from home. We got a live in carer in. I was still hoping to get down to stay with him after the carer’s contract finished a couple of weeks later as by then car hire was opening up again. But he got urinary retention and ended up in hospital.
We tried to get him discharged home and set up care at home but he refused - he’d been told he’d need 24 hour nursing care as by then was bedbound. This was hard because I’d always promised him I would look after him and never let him go to a home. Because he had always said he definitely didn’t want that, because he grew up in a Childrens Home and it wasn’t a happy experience. The big worry is he had depression, and I felt no-one understood that the depression was what was keeping him bedbound. I’ve seen him with severe depression before and it could affect him very physically and the only thing that worked was the right medication. He was on medication but it wasn’t working. I think it’s called breakthrough depression, triggered by the stress of being alone and worrying about his cancelled appointments and health.
He was horrified to find they weren’t going to treat anything in hospital - he wanted to get better. Said he’d been thrown on the scrapheap (they decided he was palliative care). He was 89 but so strong spirited. I kept saying - he’s still grieving my Mother’s death. He needs time. There was no visiting allowed in hospital but he liked it in there and became horrified when they wanted to discharge him without any treatment. He got transferred to a home and it was all very hectic with all the pandemic restrictions - me at a distance. But we did get a choice and had a recommendation. When he first went in there he was ok. We had great chats on the phone. He said he was quite contented, just wished he could walk. But he refused to let anyone hoist him into a wheelchair. So he literally spent the last year and a bit of his life in one room, bedbound. Which is probably why he was the only one in the home not to get Covid.
Visiting started so he was happier about that - my sister lived nearby and could visit. Then within a few weeks it stopped again (the second lockdown last autumn). Then it got stressful around December with the second wave. The staff were dropping like flies - off sick - all the residents had Covid, except him. He was terrified. And under a lot of stress. Because I think he basically felt he was being neglected and also a sitting duck. I desperately wanted to kidnap him and talked to my sister about trying to get him home with carers. She had power of attorney and began to make unilateral decisions but was too busy to listen to what he was saying. So I had to just persist with trying to persuade her that things were to distressing for him. Things blew up in January and someone from the nursing home phoned me and shouted at me saying I’d been inciting him into making complaints. It was awful - (and untrue, although he had been telling a number of people on the phone how bad things were). I was quite traumatised. But the worst thing was, I lost contact with my Dad. He became too scared to speak on the phone thinking people could hear him. That was all we had - those video calls - hands free (he couldn’t manage holding a phone as had developed coordination problems). He was scared and he lost his voice, so the few brief calls we had he could hardly speak. I am still grief stricken that he spent those months of that long third lockdown, between January and about April/May, on his own, with his phone contact with me cut off, and no visiting. And he felt he was being neglected. He wasn’t making it up. I had overheard a nurse being very unpleasant to him when I was on the video call and nobody realised. I think they did realise and so I was accused of inciting him into making false allegations.
Now at this point I thought - can’t leave him there. This is horrific. I know the staff were under stress but they cut off his only source of comfort - our daily calls.
So I tried to get my sister to agree that we needed to move him. But she decided he was in the best place in the middle of a pandemic and he was getting the care he needed.
That was the point where I thought - do I go over her head and contact social services. But there were family issues. My sister doesn’t particularly like me and if I tried to do anything she didn’t approve of, she used to complain to my Dad and upset him and this caused him stress. If I went over her head, all hell would break loose and that would cause stress to my Father. I tried to rationalise it that if I did go to social services, they may visit and find nothing untoward, and my sister, with power of attorney, would confirm she had no issues with his care and wanted him to stay there. So I tried to accept there was nothing I could do. He did phone occasionally and I am tortured by some of this as he seemed to be having ptsd - talking about things from the past that he was scared of. It was so distressing as he was clearly terrified. He nearly died in February - I was told he only had a few days. Then came round again. Then visiting started again and I relaxed a bit thinking - at least he is seeing my sister, and the odd friend.
By this time I was having problems of my own at home. And caught up in those. My Dad still didn’t do phone calls. I left messages. I heard how thin he had become and worried that no-one was helping him to eat. My sister was in a sort of denial. She accepted that one team were good carers and one team weren’t but at least he got good care some of the time. And refused to have him moved.
This summer I wanted to get down and see him. But our family are still shielding due to a medical condition I have. So I needed to work it out carefully - I still needed to hire a car and I needed somewhere to stay on my own. I wanted to stay in his house, which had been empty all this time. So I could go for a week and have a few short visits rather than just hello goodbye. My Sister said she was about to sell the house so I couldn’t stay there. I became quite depressed myself at that point. I would have rented a holiday let but everything was booked up this summer and had been for months, and I was worried about the cost, which I couldn’t afford. But there was nothing available anyway.
I thought - after the summer holidays there will be somewhere, and thought about hiring a motorcaravan. But before that I needed my eyes testing and new glasses. And some driving practice. I haven’t driven for 15 years! And have lost my confidence a bit. I was just at that point of thinking I could get there when I heard he had died.
I am sorry this is so long, but I feel tortured that I didn’t do enough. There was one call about March/April where he phoned me and said - I know the logistics are a problem but I really need someone here all the time. At that time he also became angry with my sister shouting at her down the phone for a while. And saying why didn’t she come and look after him at home and give up work. But I felt like I had abandoned him at that point. Because I couldn’t go. I couldn’t have been there all the time if I had got there. I desperately wanted to kidnap him.
So I am quite tortured with guilt - and grief. I don’t know if he knew I cared. Maybe he felt abandoned. That I never got to see him. Despite being a very intelligent and capable man, I don’t think he ever quite understood the restrictions. Maybe he thought I was a coward and didn’t care. And I do feel like a coward.
So not only had I not seen him for 18 months before he died. But I couldn’t help him. I tried a number of times to talk to nursing home staff but my sister used to get angry if I got involved in any care discussions as she had power of attorney.
I know, if there hadn’t been a pandemic - I would have been there looking after him. I know it’s because of the pandemic. But I am so grief stricken that my Father suffered for so much, so long, on his own. As a bedbound patient he was just left alone - except when turned four times a day. No company, no-one to just sit and chat to.