When “The System” Fails

I haven’t written a blog for some time, as you read on, the reasons will become clear. I write this with the sad news that my dad died yesterday after a frustrating and difficult few weeks, which were made harder by failings within the “system” and a lack of communication. This is not meant to be a rant and it certainly isn’t a slight on anyone who works in any of the areas that I have mentioned. As you read on, or if you have been through this experience, you will know that people working within “end of life care” deserve a medal.

Early Days

Almost three years ago, my dad was diagnosed with prostate cancer which soon spread into his bones. He was treated with hormone injections and also had some radiotherapy for the pain in his neck and back. He is 83 years of age and has a number of other health problems too. Sometimes he was really positive, but other times it felt like he had given up. In any event he has managed to live fairly well for three years. with a few hiccups along the way.

Long Hospital Stay

My dad had started falling a bit at home so about 7 weeks ago we got him a care alarm, to help him and my mum. Within days he had fallen. My mum used the alarm and an ambulance came and took him to hospital. He didn’t have any injuries, but was very confused and disorientated. Then followed a long stay in hospital, various infections and another fall.

Some of the individual staff in the two hospitals that he stayed in were committed, caring and compassionate and a credit to their profession. Some were not so good, including staff that were disinterested, patronising and sometimes downright rude. I know that everyone is busy and overworked, I work for the public sector myself, and know how frustrating it is to be lacking in resources,  but the treatment of vulnerable elderly people in hospital should be absolutely top notch across the board.

The lack of information for us as a family was frustrating, leaving us feeling that we were being annoying or difficult if we asked questions about his care. A decision was made that he was medically fit for discharge about three weeks ago and arrangements could be made for him to come home.

I may be naïve, but I thought that being elderly and having a terminal illness would qualify you for care, but apparently not. When I started contacting Social Care and other organisations, I soon realised that the first thing that agencies want to know is how much money they have in the bank.

After a fall in hospital, where dad tried to get out of bed on his own when the fire alarm went off, dad was placed on a ward with constant supervision. He had stopped eating at this point and varied from being alert and chatty to being confused and disorientated.

Last Friday the decision was made that dad could be taken home. No one gave us any information, choices or assistance. We only found out he was being discharged when we went to ask staff what was happening. We were told that dad would get carers four times a day, but didn’t need any other care as he could mange quite well and would need to deteriorate a lot more before he required other help

The week from hell

My dad was brought to my mum’s house at 530 on Saturday evening. Mum (who is 82 years old) was at home on her own. Dad was sat on the settee and left with a bag full of medication. I went up to stay with her as I was worried that she may not be able to manage him.

At 730pm dad decided that he wanted to go to bed, so me and mum helped him into bed. I then started a series of phone calls and found out that no one within the community. who would be responsible for assisting us, had been informed that dad had been discharged from hospital.

The first night was extremely hard. Dad was in pain, distressed and confused. He wanted to get in and out of bed all the time, assisted by me and mum. He didn’t sleep at all. By the next morning we were exhausted and honestly considering putting him in a nursing home.

During the morning, the carer from the end of life team arrived, as did the district nurses. They were so supportive and gave us so much more information and assistance than the hospital ever had. It was the first time that any actually told us that dad had a matter of weeks to live.

With the assistance of these marvellous people and support from members of the extended family, me, my mum and brothers manged between us to look after dad over the next few days. It was one of the most difficult and exhausting things that I have ever done. There was some really traumatic times, but also some really warm and loving chats.

Dad died, peaceful at last, at his home with his family. There were times when I thought we would never get through it, but I wouldn’t have had it any other way.

I have to say a massive thank you to the many carers and nurses who have spent time with my dad and my family over the last few days. The job that they do is worth more than any money could buy.

A last word

I would say to anyone who is caring for elderly or sick relatives, that it is worth the time looking on the internet or speaking to organisations and finding out your options and entitlements. This will make things so much easier to get the help that you need early on. I’m not sure if it’s the same everywhere, but we were truly in the dark about what was happening to dad. Had someone explained the kind of behaviour and symptoms he might display, before sending him home from hospital, those few days would have been so much easier.

Also I would say that you find out who you can rely on very quickly and that some people distance themselves very quickly. I can understand why some people don’t want to visit a person who is dying as it isn’t a nice thing to see. I also understand that it may bring back memories of your own loved ones. I know that it’s not always easy to find the right words to say to a family who’s loved one is dying. Just remember that it can be a very lonely place. Sometimes all you need to do is call in and say hello, hold someone’s hand or give them a hug. It means the world and, as hard as it is, it will be the best thing that you could ever do.

 

 

 

 

 

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