For some of us , having a loved one being at home when they die is the best thing. For others it’s downright scary .. overwhelming. What if their death is horrible. What if I can’t cope ? what do I do once they’ve died ?
I was part of the latter group.
my partner Steve was diagnosed with a rarer cancer calls MDS in November 2020.
He already had COPD and was suffering with painful limbs. Fatigue and loss of appetite.
After a bone marrow biopsy the results reveals that his blood had not altered for years .. he was put on watch and wait.
At Easter he had a bleed on his eye. He’d given up being a self employed driver and it was found his platelets were very low. To receive treatment he started going weekly for a platelet transfusion.
He started to have frequent chest infections and by the middle of last year wasn’t walking very far and was constantly sleepy.
we managed to go abroad but he struggle to walk about.
in October we went away again. This time we had to find him a wheel chair. He’d lost a huge amount of weight. He loved being away in the sunshine tho.
On returning home things went down hill. Time in hospital chest infections.. platelet and now blood transfusions. We didn’t know it but his blood was changing.
a twitchy leg put him in hospital for two and a half weeks before Christmas and the diagnosis bounced back and forth between a tumour in the brain or a bleed.
He twice told me he’d had enough.
once he’d left hospital tho he came home promising to eat.. take his meds and have treatment.
on the first visit back to haematology they finally told him he now had acute myeloid leukaemia. Nothing could be done.
I asked how many months he’d got left and was told weeks.
we brought Steve home and due to my concern about not being able to cope with him dying at home booked him into Loros for when the time came.
That day arrived only to be told Steve was too poorly to move. We were told he could die at any time. Christmas had come and gone in a whirl of carers .. hospital beds being delivered friends calling to say goodbye. Steves family ( son and daughter) stayed over and my own two older children and their partners all pulled together. We suddenly found we were happy that Steve had remained at home. We could sit with him as long as we wanted. Help when he needed help.
Cry with others who felt and knew our pain. we laughed too about his life and the fun we’ve had. We learnt about each other.
on Friday 7/1/22 we were told he would not survive the day. We knew for some reason that this was true, but thought we’d time to go and get food for lunch. Despatching the younger ones to go shopping I was left with his son downstairs.
I sat with Steve. Friends had sent WhatsApp prayers and I read each one to him. Then I told him I was going to straighten my hair. I couldn’t be scruffy for him on that day.
halfway through I looked at him and he was watching me with his eyes fully open. ( he’d been asleep up to that point ) i said hey !! How’re you ? Then realised his breathing was very shallow. I called his son. Steve gave us both two beautiful smiles and died ….
I sat with him holding his hand as we all did until it was time for him to be taken my heart breaking at that moment
In the days that have followed .. a week tomorrow.. I realise what a privilege it was to have him in our own home during his last days The peace we felt despite all around us was palpable Steve was calm and relaxed at peace and pain free
Dont ever think that you can’t cope in these situations nothing will bring him back and i only had 10 years with him but boy were they good ones .. He will be 62 the day of his funeral we are giving him a party I am hopeful of my future despite being on my own and despite being without the love of my life He was so brave like so many before him
in bringing him home he had a positive death surrounded by the love of his family and in that positivity we will eventually be able to carry on without him xxxxx
Lady Lizzie that was so beautifully written and so positive.
We had my Dad at home until the end and for the final 10 days I was there with him and my mum as she was exhausted.
During those 10 days, there were so many precious moments as well as a few things to deal with but it was also a special time because as a family we were able to spend precious moments with Dad.
There are 6 of us children but I am the only one who lives away so we were on whatsapp group. I arrived following a strange phone call from my mum asking where I had been all day so I said I have been here mum but you haven't rung. Oh no she said I was going to ring you because I thought your Dad was going to go this afternoon but then he rallied around again so I said well I will be down tomorrow so she said OK. There was something in her voice so I said Mum would you like me to come today so she hesitated and said no you will be here tomorrow so I pushed the point and she finally said it would be nice not to be on my own if anything happens so I said OK I will get everything together and come down. I arrived at 9.30pm and went into Dad whose breathing was very shallow so I decided we ought to put the call out on whatsapp so 20 minutes later all my siblings were gathered at their house. We took turns in going into see Dad and he asked my sister why were we all there so she said because we have all been out Dad so we though we would call in on mum for a coffee so he smiled and said its good to get together.
Through out the days that followed Dads carers came and saw to him. He would go back to bed after they dressed him but mum.carried on getting him up at lunchtime and into his chair so he didn't get pneumonia but on the Wednesday.when he woke up, he said to her "The battle is fought, the battle is won" which as a Christian and a true man of God meant he had been fighting a spiritual battle. He was at peace.
The following day as he was sitting in his chair, the carer was just finishing his care when another carer who was picking his carer up popped in and said "its me tonight, so see you later." My dad said OK but 5 minutes later, in a state of very high anxiety he said has he gone has he gone so I said who Dad so he said that carer so I said yes Dad he has gone so he said Good good. I felt really upset that my Dad was so anxious about this man, so out of character so I said you really don't like him do you Dad so he said No no he is too rough. We had had issues with this man before and treating Dad without dignity so I said to Dad don't worry Dad he won't be coming in here ever again I am going to sort it now. Normally my Dad woukd sat its ok don't make a fuss but he didn't he said a very defeatist thank you. I called the agency and told them I didn't want this guy seeing to my Dad so they said it was too late to change today but they would call the carers to advise them to swap clients so I said well whatever but he is not touching my father ever again. They had swapped carers but at 8am I called the agency again and said I did not want that Man in ever again. At 9am the carers car pulled up outside but they just sat there then a big 4 x 4 pulled into the close. The female carer came in and I got up.to help her with Dad as I has been doing but the guy who came with her just said I am from the agency I will help.her and they saw to Dad. When they came out he asked if we could sit at the table and he asked what had been going on with the guy. This was the owner of the agency so I had my say. He assured us he wouldn't be coming again and woukd be receiving his final written warning. The poor girl had to get back in the car with the offending carer so that evening I asked her if she had been OK.so she said yes he kept asking what are they saying about me so she said I don't know I was with A. She then told me lots of people complained about him. I was so glad I was there to sort this out because neither of my parents like to complain but I was not prepared to see my Dad so anxious.
The following day.Dad was in a lot of pain and the doctor came out. He asked mum what Dads routine was.now so she said he gets up for carers then goes back to bed.til 12 them.we get him up and into his chair so GP said it's time to let him do what he wants to do. Dad never got up again. The following days the district nurses were struggling to get his pain.under control, the cancer had spread to his bones. On the Thursday night I called them in but a doctor arrived and I will never forget this doctor. He said he had come because the nurses were so busy.but such a laid back guy who looked as though he has just got out of bed but his manner was just so reassuring and genteel. He got some meds ready and went into Dad. Mum was in bed with Dad so after he injected Dad he came out to write up his notes commenting on what a gentleman Dad was so then he said what have you been told about your Dads prognosis so I said nothing so he said ummm at this stage you know it's unpredictable and your Dad could pass very quickly. Now I still don't know why I said this but I said definitively Sunday, he will go on Sunday at which point the Doc said I think you need to be realistic, it could be anytime now at this stage. I have been working night shifts with patients like your Dad is presenting and it can be fast but I again repeated Sinday, it will be Sunday.
Friday night again saw us all at Dads bedside but this time he didn't ask why, he was fairly unconscious by then apart from when in pain. Saturday they finally got the pain under control and the carers kept coming. Sunday morning I told the carer not to come on the teatime and asked the district nurses if they could come at 2pm to turn Dad and I would get a brother to help me at 7pm. The district nurses came at 2.30pm and told me not to turn Dad anymore because he was comfortable but it would be hours so maybe call the family at 4pm. My sister came at 4pm she is a nurse, went in to see Dad and came out to say send the message on whasapp. Half an hour later we were all there, no inlaws just us 6. We took it in turns to lie with Dad and say what we wanted to say. He was unconscious but held our hands with strength as we spoke with him. My younger brother came in to see I was ok when I was with Dad and I got him to take a precious photograph of Dad really holding my hand. A treasured photograph now. I told Dad he could let go, we were all going to look after mum as we had him and he said I know. Everyone took turns and I guess we all has two or three times each with him. Mum went and laid with him exhausted and at just gone 10pm my sister took his pulse and came out to tell us there was a change and we should all go in. We all stood there surrounding the bed which felt so surreal I thought I would start laughing so I left the room to fetch a bible. My sister was reading the bible on my return, mum asked for psalm 102 which my brother read then my sister started reading in my father's house there are many rooms and as she did my Dad just slipped away. She paused and took his pulse then said Mum Dad has gone. Mum opened her eyes and said ummm so my sister said Dad has gone Mum and then she heard. Dad passed away at 10.18pm on the Sunday. I still don't know how I knew, I just knew.
So having your loved one at home has do many positives, so many opportunities to say and do precious things when in hospice or hospital you are limited. I am so glad I was there in those precious final days and I stayed for mum until the funeral, supporting her and holding her when she broke her heart mostly in the early hours of the morning. She lost the love of her life after 63 years of a very loving marriage.
I don't know why really but we didn't break down and cry, I think seeing Dads face so serene, the pain gone that we all found peace at his passing. Of course we have since she'd many tears and have grieved our loss but in the moment we just felt peace and Dads peace. Maybe because we are Christians or maybe because it was time, time for him to go after 2 extra years that were just palliative care.
You get the opportunity to say what you need to say and to do what you need to do when you need to say or do it. It brings you closure in the comfort of home and for me it bought peace fir us all in the gentle way he passed.
One thing I woukd say, if your loved one is in pain, keep calling the nurses in no matter what time of day or night, your loved one deserves to be pain free
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