Being there until the end - reflections of a volunteer

In the last 4 years I was told 4 times that someone dear to me was coming to the end of their life.

The first one was my dad. We only had a few days between knowing he was going to die and him actually dying. His wish was do die at home. A hospital bed had been set up for him in the living room of their flat. Carers came in 4 times a day to help with personal care. He had been prescribed morphine, first by injection because it was the weekend, but on Monday his GP had visited him and changed it to a morphine plaster. Dad was asleep most of the time, but when he was awake was able to talk with us. He was a wonderful dad. Everyone who knew him loved him. His carers were fond of him. Right until the end he remained so thankful for everything they and we did for him. It was so hard to see his body getting weaker and weaker and for him having to accept our help for even the most personal things. I helped the carers to wash him and get him to the toilet (I used to be a nurse). He joked that he never thought the time would come when I would do for him what he did for me as a baby, My mum hardly ever left his side, holding his hand. We played his favourite music for him. On Tuesday evening, when we had persuaded my mum to come to the table to have something to eat with us, I noticed his breathing was changing. It became slower and with longer gaps, until it stopped completely. All of a sudden he was gone.

About a year after my dad died I got a phone call to say that a dear old friend of mine was in a care home and that things were not looking good. We had become friends many years earlier when my husband (he is a carer) was looking after her husband and they discovered they both had married a Dutch wife. She was an incredibly strong woman, both physically and mentally who never made a fuss about any of her illnesses. When I visited her in the care home, I was shocked by how frail she had become, The first thing she asked me was to sort out a Dutch funeral notice for her . She knew that her life was coming to an end. In the days that followed I visited her as often as I could and took turns with one of her daughters to be with her. Like with my dad, it was so hard to see her body getting weaker and weaker. In the last days of her life she only wanted her daughter to be there. She died at Easter.

The third time it was my mum. She had a fall at home and broke her hip. The same thing had happened the year before that, but that time she had recovered well and had been able to go back to her own flat. This time, the surgery went well but when she was in a care home to recover she developed lots of complications. We felt hat she was not given the care hat she needed and that we had to fight for everything. My sisters and I took turns trying to e at the care home as much as possible. The days were long and sometimes we were feeling exhausted. Eventually, my mum got pneumonia. There was a new doctor, a really nice young man, and we felt there finally was someone who listened to us. He tried his best, but when we met a few days later he told us that nothing more could be done for her. This was on a Thursday. We asked for a place in a hospice and found one we liked. Unfortunately, with all the red tape involved, she could not go there until the following Monday. Mum was in a room without an en-suite and had to share it with another person who unfortunately was very confused. We had to stand our ground again to get her to be moved so that mum could be on her own, The nice doctor even arranged for a bed for me to be set up in the room so that when my sisters went home I could sleep in the room with her. She was very restless at night and had hallucinations, probably form medication. It was so distressing to watch. I honestly did not think she would survive the weekend and hated the idea of her dying in the care home. Fortunately, she was still alive on the Monday and was moved to the hospice. Walking into that hospice was like walking into a beautiful and peaceful garden. The staff was great. They told us: we will do the care, you just be there for her as her daughters. We could not have found a better place for her to spend the last days of her life. I was not there until the end, but one of my sisters who lives near the hospice was called in time to be there with my brother-in-law when mum died peacefully.

The fourth person was my mother-n-law who died in November last year. She phoned me on August 10th to tell me she had been diagnosed with stage 4 lung cancer and that nothing could be done for her. I was in tears, but she was very calm and matter of fact about it. She said that she had had a good innings and that all her affair where in order for her sons. She had been referred to the palliative care team. Her wish was to stay at her own home until she died. At that time she was still living very independently, but that evening she had a bad fall that changed everything. She was in a lot of pain and lost her mobility. A care package was put in place and her sons decided that she would need a family member to be with her 24/7. Many practical things had to be arranged to make the hospice at home care possible: hospital bed, commode, equipment to move her, a commode, etcetera. Over the next 4 months one of her sons and his wife, her sister and brother-in-law, and myself took it in turns to live with her. found it very hard, especially emotionally. Lockdown made it even harder. To gradually see her getting weaker and to witness the increasing effects of the cancer was hard. There were numerous problems with the care agency too which at times was extremely frustrating. The number of assessments that had to be done was a complete joke. The care in itself was quite good, but the timing was ridiculous and caused a lot of extra problems that could have been avoided. My mother-in-law took it all in her stride, but there were times when she broke down when it was just her and me. It made me feel helpless. In the last few weeks of her life I felt that she was beginning to suffer, even though her morphine dose had been increased. In a way it was a relief when she peacefully passed away before suffering more.

Based on my own experiences here are some things I would recommend if you are looking after someone at the end of their life:

Accept your own limitations
Accept all the support you can get
Establish good communication with GP and others involved in the care
When caring for someone at home: get all the right equipment in place
Maintain good communication with family involved in the care (we used a WhatApp group)
Be prepared to fight for what you know needs to be done
Look after yourself
Find someone you trust to ‘offload’ your own concerns and emotions
Make use of the internet to find help and information from charities such as McMillan
Use sites like this to find support
Make the most of the time you have left with your loved one
Play their favourite music, make their favourite food
If they are ready for it: talk about their wishes for their funeral

Finally a word of encouragement:

Being there for someone at the end of their life is one of the most loving things you can do for them. It is very hard, but when you look back in the future I am sure that like me, you will not regret that you have done it.