Being there at the End.
This blog post is straight from my heart, and so may be far too raw for others going through similar circumstances, but I feel that I need to share this, in the hope that it helps others either now or in the future.
My Father-in-Law (FiL) was diagnosed with terminal cancer towards the end of last year. This was an expected diagnosis, and in fact he had been given five years, fifteen years previously. Fortunately the advances in science and medication had given him an extra ten years, and he felt very chuffed about that indeed.
At 90 years of age he felt that he had had a good life, and made the brave decision not to undertake any further treatment, as this could well make him feel poorly and would only give him an additional couple of months. As a family we fully supported that decision.
Now.... I have always told my in-laws that I would look after them "when the time comes". My FiL and I didn't always have the easiest of relationships (far more on his side than mine), particularly in the early years of the 32 that I have known him for. My FiL would always reply that he wasn't sure if he would want me to look after him!
So the clock ticked on, and the years went by, and we found a mutually acceptable relationship. When he became ill in the Spring last year I was in the fortunate position of being free to help out, and did so until we had secured them some regular support from an agency.
When my FiL received his diagnosis the first thing he worried about, quite naturally, was how they would manage. I suggested that I could help them. (My job allows me flexibility as I am self-employed, and for me family always comes first.)
I was touched at how relieved my FiL was when I suggested this, and it was agreed that I would provide them with regular support initially, adding in more time as necessary until I finally needed to stay with them.
A few years ago I acted as next of kin for a fellow Scouting Volunteer/friend, and supported him through his six week end of life journey. Sadly our friend's journey was not an easy one. He was very poorly, and the hospital didn't get his care quite right, fortunately a bed in a hospice ensured he had a peaceful end. What I didn't realise at the time, was that I gained a huge amount of knowledge, and experience, in those six weeks, and that will never leave me.
This meant that I knew exactly what I was signing up for with my FiL. It also meant that I was fully prepared to do everything possible to ensure that my FiL's end of life would be as gentle and pain free as possible.
He was a very brave man. He immediately wanted to make decisions and talk openly about everything. This helped enormously. Every time I saw him we talked, and he made decisions. He immediately completed a Do Not Resuscitate form, which was witnessed by a neighbour. He also informed me that I was the only Celebrant he would have delivering his funeral, something that I accepted but knew would be extremely hard.
FiL's wishes were to stay at home if possible. He accepted that he may need to go into a Hospice, but was adamant (he was adamant about a lot of things) that he wasn't to go into hospital.
As a family we had a Whatsapp group with my husband, his brother and sister-in-law and me. This enabled me to keep everyone up to speed, and I would post each time I had visited. For me this was perfect as I felt extremely responsible, after all it wasn't my own Dad I was caring for. It proved to be a fantastic log of his journey, and useful when I needed to know what had happened when, especially in his last few days, which blurred together.
On a visit in February it was clear that my FiL was unwell, whilst the cause wasn't immediately apparent, over the coming days it became clear that he had Shingles. Not surprising really when he was so weak and barely eating. Events began to move quickly, and my husband and I stayed for a weekend. I then didn't go home as it had become apparent that they couldn't cope without me there.
My Mother-in-Law has been poorly for a few years and we had already visited residential homes with them both in preparation. It was agreed that she would need to move in for respite as I couldn't care for them both with my FiL's health deteriorating. This was arranged, and she moved into what would become her permanent home, allowing me to focus solely on my FiL.
Whilst some family members found it hard that they were living apart after 62 years together, the practicalities were such that it was the best option for them both. The minute she was settled in, you could see the strain lift from my FiL.
The Doctor arranged for the District Nursing Team to call, and this helped things to move quickly, ensuring that my FiL was as comfortable as possible. They were able to order a hospital bed with a comfy mattress, slide sheets enabling us to move him on the bed with minimum discomfort, a table to sit over the bed and a commode. In fact absolutely everything we needed to keep him at home, in his own room, looking out at his garden and a view of the Cotswolds.
The Doctor also arranged to have his end of life drugs drawn up. This meant that they were at the house, and ready to give him when he needed them, instead of having to wait for them when the time came.
The District Nurse also arranged for a prescription of Oral Morphine (I don't think he was too impressed when I joked that I would lick up some he spilt on the table though, oops)! Being serious though, this was the hardest thing that I had to do, being responsible for giving someone a controlled drug was, quite honestly, scary. I made sure I recorded every last drop that I gave him. Luckily the mildest dose did the trick and got his pain under control very quickly.
By this time the cancer had spread rapidly and was in his brain too. We didn't feel the need to share this with my FiL. He knew how poorly he was, particularly by then, giving him more detail wasn't necessary.
The District Nurse filled out a funding application form (and was a whizz at doing so). This would give me care support. In particular I was keen to maintain my FiL's dignity for as long as possible, and therefore have someone in to wash him each day.
As it was a Friday afternoon we knew that the care package wouldn't be approved until Tuesday at the earliest (I know, why doesn't the NHS all work 24/7)? However, the wonderful District Nurse made a call to a local charity, and asked if they could support us. We were just out of their catchment area, but fortunately for us their case load was light, and they agreed to support us on a day by day basis.
The lady who arranged the care popped down that evening, and was so wonderfully reassuring. I was totally exhausted by then, we had moved three single beds downstairs and a double bed upstairs, I'd helped my MiL pack and taken her to her new home, and I had barely slept for a week. To know that we would have Nurses coming in each morning to care for Brian and then another overnight to stay with him, and relieve me, was absolutely amazing. Even more so as Kate's Home Nursing are a charity and receive no public funding.
The most valuable piece of information that I received was to be told that monthly changes meant it would be months, weekly changes then it would be weeks, daily changes then it would be days and hourly changes would mean it would be very soon. The honesty in sharing this was much appreciated, and helped me to know during the coming days exactly where we were and what needed to be done when.
My FiL was comfortable and well cared for. My husband was with me all weekend, and my brother in law cut his holiday short and arrived on the Monday. The home nursing team continued to support me, and between us we were able to ensure my FiL was free from pain.
The only blip in all of this was when the care funded package kicked in. We were offered a package that I felt obliged to accept, and two ladies appeared on the Wednesday morning. Sadly they had no understanding of end of life care, and the whole experience was horrendous for both my FiL and myself. The District Nurses confirmed that we didn't have to have them back, and the home nurses kindly agreed to support us until the end. (Yes, I cried when I heard that, huge tears of joy). I have since put in an official complaint regarding this, which has been taken very seriously. I just didn't want anyone else to go through what we went through.
The Doctor chatted with my FiL about the decision to have a catheter fitted, and a syringe driver (which provides a regular dose of all the drugs via a syringe, that has a pump attached). Both would make him more comfortable and I would only need to give him oral morphine as a top up. My FiL willingly agreed to this, and two gently and caring District Nurses visited to put these in place.
The lovely home nurses could top up with any of the end of life drugs as necessary, which meant that my FiL was extremely comfortable, and I didn't have to call, and then wait for, the District Nurses.
We made sure that the family members who needed to visit did so, and from Thursday lunchtime my FiL drifted into a relaxing sleep. We had been able to move his bed around so that he had a different view, but he had asked to be moved back to his usual space so that he could see his beautiful garden in full view, which he did. The bed was so easy to move that I could do this on my own.
On Thursday night he slept all night in a deep, relaxing sleep. He looked so comfortable. By now I was helping the nurses to move him and freshen him up, and was moving him when they weren't there, just to keep him comfy.
We thought that he would leave us on the Friday, but being stubborn he defied us all and hung on.
On the Saturday morning the nurse arrived early and sat with me. At this point patience is definitely needed. You play a waiting game, listening and watching. I had set the I pad up the day before and had a playlist running with jazz and the Hollywood crooners playing. It was extremely relaxing, so much so that the nurse overnight left it on as she enjoyed it so much!
The nurse left just before lunchtime and my husband and brother-in-law came and went, chatting and sitting. I had my lunch on a tray by the bed and then sat and watched and waited. It is normal for the breathing to change and to rasp and rattle, and this had happened the day before, but the drugs had alleviated this and so my FiL's breathing was gentle.
Just before the District Nurse was due to arrive to add the new drugs to the syringe driver there was just my FiL and I in the room. I had already chatted to my husband and brother-in-law about the very end, and they had both said they didn't really want to be in the room. So, I held my FiL's hand and talked quietly to him. I pointed out that it was just the two of us, that he could choose when it was his time, that the boys weren't there and didn't want to be, that he could see his garden (he opened an eye and looked out at it), that he was free from pain, had lived for 90 wonderful years, and as he had told me...his friend was waiting with a golf club and a whiskey.
He closed his eye, and as I was speaking his breathing slowed and slowed and slowed until it stopped. I waited. I knew from experience that there could be a gap and a breath, but there wasn't, just calm and quiet and peacefulness. I could hear my husband on the phone to my Mum downstairs, and people outside in their gardens, but in the room it felt gentle and peaceful.
I knew that I would need to alert 'the boys' but then heard a knock on the door. The District Nurse had arrived. The timing couldn't have been more perfect, as she was able to confirm the time of death, so there was no need for me to call the Doctor or the District Nurse and wait for them to arrive.
I opened the window, as it felt right to let in the fresh air and possibly allow his spirit to float away.
My overwhelming feeling was sadness and relief. Relief that he was now at rest and finally free, and that he had had the most gentle end that I could possibly have given him. I also felt extremely proud and privileged to have been able to do that for him, on behalf of his whole family.
I rang the Funeral Director, who duly arrived and quietly and respectfully removed his body.
What an absolute honour it was to be there at the end. To support someone on their final journey, and to know (apart from that blip) that it had been as gentle and pain free as I could possibly make it.
I am forever grateful to the Doctor, District Nurses and Kate's Home Nursing for the incredible help and support they all gave to me and to my FiL. I couldn't have given him such a gentle end without them.
Of course, I had a funeral to prepare for and deliver, but that's another blog post waiting to be written. However, the photo above needs an explanation.
I find that I can remain strong when there are things to do, and others around me need me, and so the weeks after his death and funeral were busy and filled. I shed tears, but I didn't let go.
Last week we finally grabbed a few, much needed, days away. Staying with relatives in Cornwall. The weather was beautiful for this time of year and we headed to the beach, to my happy place. As I stood on the shoreline, with my husband by my side I cried, great big, body wracking tears, it just all flowed out of me, just like it needed to do. A friend calls it face watering, and boy did my face need to be watered.
I cried and I sobbed, but then I smiled through my tears. I smiled because I was on a beach that my FiL loved, where he holidayed with his sons and where my husband and I holidayed with our children. I was in a place that brings me great happiness. with someone I love with all my heart, and I know, as I see it every day in my job, that life goes on.
So this photo shows tears and happiness, it shows love, and it shows that we really can do anything in life. Ten years ago I wouldn't have believed that I could support anyone through their end of life, and I would never have dreamt that I could do the job I do, and yet ....... here I am.