What’s it like being with someone when they are facing death on the end of life pathway
“You live and then you die”, this was always my Dad’s response to anyone speaking about death. These very “matter of fact” words throughout my childhood didn’t stop me from being petrified about myself dying or dealing with the death of someone close to me; how would I cope if I found myself in that situation? In fact, I remember, pre-teenage years, after the death of an aunt, crying myself to sleep thinking about the fact that we are on this planet now and then when we die, that is it, the end. I would imagine life going on and on and existing without me ever being seen again and I would think about never seeing my friends and family. I would thoroughly upset myself, lying there in my dark bedroom. It was terrible.
There is nothing else – or is there? The thought that the end is the end, the grand finale, the full-stop, is a very scary thought and I guess that’s where religion comes in. If we believe in a life after death, then there is no end, we go to a much better place, paradise or wherever our beliefs take us. This is a great comfort. As humans, we are not really equipped to see an end to our lives. It doesn’t fit with our intellect.
Scared of dying
Moving on 30 years and I recently had to deal with my fears head-on. My Dad would be ok with me writing this and I know that he is somewhere looking down (or up), proud that I faced my childhood fears with his voice saying those words, “you live, then you die”. As I write this, I sense his dry sense of humour filling me with warmth and I am glad that he had that attitude, as it prepared me for the worst.
My Father had dementia and although he had many other issues, I think that ultimately, it was that which ended his life in his 70’s (which these days I feel is at least 10 years too short). Dementia just leaves the patient without that “will to live” as they don’t really know who or where they are. It’s horrible to see a loved one suffering from Dementia. Some days my Dad would know who I was and other days he would think he was fighting a war in an era where he was not even born.
For my Mother, it was understandably terrible. The man she had lived with for 40 years hardly ever recognised her, or he would be horrible; accusing her of not visiting (when she literally spent every visiting hour at the hospital). He could be verbally nasty, not only to her, but to hospital staff too and it was an emotionally draining time. She didn’t have much support from my Sister and I as we both live away and have young children. There was absolutely no way we could just drop everything. We are that “sandwich society”; the filling between elderly parents and young children. We are trapped.
Dementia caused him to have many infections during the last five years of his life and they would send him looney. I am guessing that the body starts to give up when the mind does not correspond with its faculties. How can an immune system function when the brain is not working correctly? It’s the same as a car not being in tune. The body is ultimately a machine and when parts of it are not working correctly, the consequences of that can lead to error messages in areas of the body.
After several years of my Father being in and out of hospital and my poor Mother spending hundreds of visiting hours on hospital wards when he had the infections, I got “the call” to say that they thought this was “it”. The end was in sight and he would be set free from the trauma in his own mind. His imagination of being in a war zone was a very scary place and he would often truly beleive that he was in the cold, left alone or that someone was coming to get him. He was trapped in a place which was frightening and whatever my Mother or I told him, he believed what his head was telling him. We couldn’t convince him that he was safe in hospital. His own head told him that he was in a very bad place.
He would sometimes swear at the staff and if he could see his own behavior as a normal person, he would be mortified.
Dementia can leave you with someone you don’t recognize at all. When that person spends most of their day petrified, trapped in their own mind and you can do nothing to console them, what can you do?
The end of life pathway
Following the news that my Father was on, what he would describe himself as his “last legs”, I arrived at the hospital to find my Dad basically a shell of himself and wrapped in “bubble wrap” to keep him warm. I was shocked. The man in my life who should always be strong and looking out for me was no more. The tables had turned, and it was he who needed looking after.
I was informed that he was on an end of life plan as he was facing death. This used to be called The Liverpool Pathway, which was phased out in 2014. At that point, I had no idea what that entailed but soon realised that we were letting him go on his way and in the most comfortable way we could. He was given painkillers if he became distressed (and morphine), but that was it.
It had been decided that nothing was going to make him better. He was in such a sad state; we hardly knew if he was in pain or not. He did not speak, move or even close his eyes. All we could do as a family was tell him that he was ok to go to sleep and that we would all be ok. We told him that we had no worries and that he was not to be concerned about anything; we told him that it was ok to leave and go to a better place.
Lots to think about
In very basic terms, I had to get my head around the fact that we were now going to allow my Father to die, we were going to let him go. We were not going to push fluids into his body or force feed him as he was dying. Until writing this, I had never considered what was happening at that time; I presume that if someone is put onto an end of life care plan, there is no hope of recovery? What is the difference between an end of life care plan and someone ending their life through euthanasia?
I have just found further information on the NHS website and it has given me comfort. My Father was at the end of his life. At the time of my Father’s death, there was a point when my sister became hysterical and thought that my mother and I were effectively killing my Father. Her emotions were raw and all over the place; and rightly so. Everyone deals with things in different ways and we all look for answers
Some believe that the end of life pathway is Euthanasia
For those of you who may also be asking the same question, I have found this information on Euthanasia and that, compared to end of life care, is very different. A person approaching the end of their life has a right to good palliative car is an End of Life Pathway the same as Euthanasia?
It is hard to see the difference when you are submerged in the situation and dealing with a loved one. For my Father, he was dying, and this meant that we kept him as comfortable as possible. It was not pleasant. He was unable to drink, so we wiped the incredibly dry inside of his mouth with a small sponge, just ensuring that he was not alone and a comfortable temperature. I was told that he probably had around 24 hours to live; bless my Father, he lived for 6 days.
Eventually he felt able to leave
My Dad finally passed away when his best friend came to visit; within 20 minutes of his arrival he decided to slip away. He must have been waiting for the right time. Medical staff will tell you that the dying either appear to wait for their loved ones to be out of the room, or they wait for someone special to be with them.
Whatever the reason, my Dad passed away with myself, my Mother and his best friend at his bedside. It was peaceful and dignified and not at all scary or horrific. I feel privileged to have been there with him in his final moments. He was there when I was born, and I was able to hold his hand and say goodbye as he left. We knew it was happening as the colour of his skin changed; we just knew. The nursing staff were called and forever etched on my memory will the image of two nurses standing to attention at the end of his bed, arms by their sides, looking very military. He left this world for the peace that he deserved.
After he had gone
The only thing which would have totally pissed him off would be that he always said that he was not religious, In the minutes after his passing my Mum and I asked the hospital Chaplain to come and pray with us. I remember saying to my Mum that we had to do it “just in case” he wasn’t allowed through the gates without a prayer and I did apologise to my Dad.
He would have laughed and told us that we were stupid, but equally he would understand as it made us feel better. It felt like closure. My Sister had popped out of the hospital when he passed-away and I think my Dad knew that she would not have been able to handle the situation.
When she returned just minutes after his death, she was not even able to look at our Father’s body out of the corner of her eye through the open door when he was still in the hospital room.
I thank my Father. I am no longer afraid of death and it has built up my resilience around this subject. It is possibly the most special thing you can go through with someone, birth and death, coming into this World and leaving.
Thank you, Dad. We miss you so much and I know you are now at peace. x