Yesterday was the hardest day of my life. The past week has not been good.
Thursday - Mick attended the Hospice Day Care, I went to pick up 9 year old grandaughter (70 miles away). On arriving home I received a call to say he was coming home on the ambulance bus instead of the normal volunteer's car. At home he told me that the doctor had wanted to admit him to the ward but he'd refused.
Friday - Had a call from nurse at day care to ask how Mick was because the ward wanted to know whether to save his bed, he was quite bright and had managed to get downstairs under his own steam so said he was ok. Next we had a phone call from GP to ask after Mick (quite a regular occurence) then said she wanted to come out but coudn't but another doctor would call to see him. When he arrived he said he thought Mick's chest was clearer than it was when he had examined him the previous week, but then proceeded to explain that he had prescriptions for Hyoscine and Midazolam, so they would be at hand should the district nurse need them for a syrige driver! Hilary's head was pulled out of the sand and stomach went into a great big knot. Mick carried on as normal and said he fancied some Cumberland sausage from a butchers about 10 miles away, so off we went to get it, picking up prescription on way home, which had to be signed for - knot pulled tighter in stomach. Rest of day as normal with Mick sleeping most of the time, I took grandaughter into town and the library.
Saturday - Mick his normal self (sleeping most of the time) but decided that he wanted to visit a local park, grandaughter went to playpark whilst I pushed Mick in the wheelchair round the park's extensive lake. Mick talked about going to see his mum/home town (110 miles away) next week, I said would see how he was but he was insistent that he wanted to go.
Sunday - Mick his normal self am, decided to go out for an evening meal. I took grandaughter out for afternoon whist Mick had a sleep. When came back Mick still very sleepy and said he felt weak. Slept some more, woke up needing loo urgently, managed to get upstairs (stair lift), did the necessary then collapsed on bed. Realised I really couldn't cope any more, rang hospice to see if they had a bed available, thankfully they had and he was admitted straight away. Mick told admitting doctor of his wish to visit mum/home town, she didn't rule it out.
Monday - I had a Carers' meeting at the hospice so was able to combine that with visiting, Mick's sister and brother-in-law also visited (from home town) which gave me a bit of a break.
Tuesday - Grandaughter in local holiday plays scheme for the day, I had to wait in for portable oxygen cannisters this am. On visiting pm Mick said he had been taking to hospice doctor about visiting home town on Wednesday (this decided because grandaughter was going home and it would be easier to carry on the journey, also our son (a shift-worker) was on his days off and I wanted to see him. Doctor came to speak to both of us and told us he would be happier if we took a nurse with us, which we agreed to, so he went off to see if a nurse was available from Hospice at Home.
Wednesday - I woke up with runs! Thankfully I had supply of loperamide. Got to hospice about 9.30 am, introduced to nurse and got to know her a little whilst Mick was being dressed. Help on hand to get Mick into car and set off, steady run down the motorway, dropped off grandaughter. Nurse said could we find somewhere private because she felt Mick could do with an Hyoscine injection (we didn't want to get him out of the car as we knew he had to preserve his energy). Found what I thought would be a quite spot in front of disused industrial units, which suddenly turned into Piccadilly Circus as injection being given! We expected to have the police swooping on us.
Rejoined motorway, me driving steadily, whilst keeping an anxious eye on Mick, with the nurse on the back seat reasuring me that everything was ok. Arrived at his sisters, Mick too weak to get out of car, various nephews called round to see him, light lunch, which I knew I had to force down, no point me keeling over. Emotions running all over the place. Nurse saying how well I was doing.
Next stop Mick's mum, 91 years old, housebound with dementia. Got Mick out of car into wheelchair so that he could be with his mum, unfortunately she didn't react to him as her son, but at least he got to hold her hand and talk to her in private.
Another wish of Mick's was to see what had been done with the recently change of the disused railway line to cycle path/public footpath. Brother-in-law, nurse set off to push him from his mum's to the path, which they could pick up by our son's, whilst his sister and myself took our cars up to the other end of the path and walked to meet them from the other end. It was good to stretch out legs, Mick giving us all a running commentary of what had been where when he was a young boy (station, goods yard) - he has a love of railways. Leaving the footpath we walked up through parkland, passing the first house he had owned and the house he was born in - this on his 66th birthday.
Back at the car, we got him in and comfortable, then he asked to be left alone for a bit of peace, must admit I was afraid that this meant that he was going to give up his fight to live. He didn't, rallied round and it was time to for goodbyes. Very difficult for those we were leaving behind as we know that this could be the last time they see him. His sister gave him his birthday present - a bottle of port. As we got going he said he was hungry and asked me to stop get him a sandwich, crisps, chocolate - which he proceeded to munch as we drove home.
8 pm we arrived back at the hospice, got him out of the car and back into the bed - the Hospice at Home nurse, stayed with us until Mick was settled with a glass of port which he used to wash down his medication. I stayed until he drifted off to sleep. A very tough, emotional day.
