Saturday April 25th – I’m Back, But Not For Long

Thank you so much to everyone who sent their love and support in the comments to my last post. You are all so kind and thoughtful and coming home to such lovely words has been a high point in quite one of the worst weeks of my life so far.  I am very blessed in my friends both on the internets and in real life.  I usually respond to every comment, but please accept this general thanks to each and every one of you.  You are truly wonderful.

 

I did have a brief opportunity to use the internet while I was away, but I knew that if I read all the things you had written and sat down to articulate what has been going on I would fall to pieces.  It wasn’t a helpful thing to do at the time, so I have waited until I am home where I can fall to pieces in relative privacy.

 

My lovely dad drove me to the hospital in Norwich on Friday afternoon, which was above and beyond the call of duty.  He was a superstar.  My mum took over the children completely and has done a stellar job of caring for them all week long.  Even UE rallied round the flag.  I am so grateful that I could just leave everything behind safe in the knowledge that everyone was being cared for, and were as happy as they could be under the circumstances.  I have been inundated with text messages and offers of help and support.  It has made me feel very cherished in what have been some really dark times.

 

I got to the hospital at three o’clock on Friday afternoon.  Jason had been on duty since the early hours of the morning and needed to go home for some sleep.  We spent about five minutes in each other’s company before he headed off for the hour long drive to his mum’s house.  I stayed behind with his sister and his mum’s partner.

 

It was really tough.  Earlier in the day the doctors had decided that as she wasn’t responding to the antibiotics that they could administer morphine to help Jason’s mum with her delirium and panic.  Unfortunately the amounts were really small and by five o’clock she was terrified every time she heard a noise or saw a movement she couldn’t identify. It was a hard job to soothe her.

 

We spoke to the doctor and he said that as he had decided that she was actually now responding to the antibiotics after all he wasn’t prepared to give her any more pain relief.  We were not impressed.  We got a second opinion from a senior consultant.

 

The news was bad. The basic upshot was that even if they cured her of the pneumonia, if they couldn’t give palliative care for the cancer it was going to kill her in weeks anyway. If they could administer palliative care, the best we could hope for was 8 months.  Because of this we were able to argue for a compromise care plan of continuing to give the antibiotics, but also continuing to administer morphine every two hours if necessary, with a review in the morning or later at night if we decided it was necessary.

 

Jason came back on shift at midnight and his sister and his mum’s partner went home for some rest.  I stayed with Jason and we sat with her through the night.  Her state had worsened in the early evening and she had become completely unresponsive.  As the night wore on we knew the end was coming.  We sat and talked with her and held her hand and comforted her.  Jason was astonishing. He was so tender and caring and thought of every tiny thing he could do to help her.  He never cracked once.  I was so utterly proud of him.

 

She died at half past nine in the morning.  Jason had just come back from a discussion with the consultant, who had confirmed our belief that this was it, and who had finally agreed to stop interfering.  The nurses asked us to step out while they washed her face and brushed her hair. A minute after we shut the door to give them some privacy, she died.  I am convinced she did it on purpose.  She wanted her last moments to be private from her family, and who can blame her?

 

By the time we had said our goodbyes and his sister and partner had arrived and said theirs, it was lunch time.  We were all totally battered and just drove home in a kind of trance.

 

The rest of the week has been just as hard in a thousand tiny, crappy little ways.  There were holiday makers in the cottage all week, and although they have been very understanding and sympathetic, we could have done without them.  Jason has had to ring everyone else who has booked holidays and talk with them and sort out all the ramifications, which added to the list of friends and family who needed informing meant that he was on the phone at all hours going over the details again and again.

 

The house, cottage and barn are enormous and were stuffed to the rafters with ‘things’.  Nothing was in any logical order, which meant that we had to start clearing out as soon as possible in order to find things like wills and other important documents.  This has mostly been my job and I have spent days sorting things out and cleaning and cooking and tidying.  I don’t think I will ever get clean again.

 

The biggest issue has been trying to find somewhere for her partner to live.  I mentioned that he has MS and is in a chair.  On Saturday night he had a bad attack brought on by stress and grief and after an evening of relatively minor accidents he ended up falling out of bed at two o’clock in the morning and cracking his head against the bedside cabinet.  It took three of us an hour to get him back to bed.  Until then we had thought maybe he might be able to manage in the house if we could find him suitable carers to visit, but that just confirmed that it wouldn’t work.  Then it turns out that Norfolk Social Services don’t have that kind of care available even if we did want it.

 

He wants to move back down to Cornwall to be near his family.  This has caused untold difficulties.  Care there is even less well organised than it is in Norfolk.  His family want to help but have no experience of this kind of thing at all and there is no time for a gentle learning curve, so the time Jason hasn’t spent on the phone to funeral homes, solicitors and the like, he has spent liaising between Norfolk and Cornwall.

 

It is not going well.  We have not managed to find anywhere suitable in Cornwall yet.  We are arranging interim care in Norfolk for next week, but because it is emergency care this means it will not be good, or even necessarily suitable.  We cannot leave him there for long.  Waiting lists for any good places are long, and costs are exorbitant.  It is a pretty desperate situation and we have become increasingly despondent as the days have gone by.

 

We had problems with the hospital releasing the death certificate.  We had problems with finding a crematorium.  Apparently it’s a busy time for dying in Norfolk at the moment.  We have moved heaven and earth and raced around the county chasing people and shouting at people and generally making ourselves totally unpopular.  There have been problems with the funeral, due to family differences about what should happen when.  It has made me think that I am going to live in a minimalist house when I am old, and that I will leave specific written instructions which cannot possibly be left open to interpretation by others.  Life and indeed death, will be so much easier that way.

 

Then we had the issue of the dog.  She has not been well for a few weeks, and took a turn for the worse in the week.  Jason and his sister had to take her to be put down on Wednesday.  This was probably the nadir of the whole week.

 

So. Here we are.  Things are still in limbo.  Jason has managed to negotiate another week off of work.  They are very understanding, but because he has an important job, things are now beginning to pile up and cannot move forward without him.  He is on contract, so not only is he losing significant amounts of money with every day that he is away, he is also nervous that this two and a half week hiatus, plus the holiday in a fortnight will make them think he is unreliable and he will be out of a job come June when it is time for his contract to be renewed.  It seems very mundane in the face of all the sadness and grief, but it is a real worry in this climate and he is terrified that he will not be able to provide for us.

 

The funeral is on Monday morning.  The rest of the week will be spent trying to find suitable care for his mum’s partner and potentially travelling backwards and forwards to Cornwall, which is an eight and a half hour drive away.  The house still needs clearing, which may mean that I have to stay behind in the house for a couple of days after Monday, we are not sure yet.  We are still waiting for people to get back to us.  It seems that the more in a hurry we are, the slower everyone else moves.  It is very, very frustrating.

 

We decided that we desperately needed a break and have left Jason’s sister behind to hold the fort while we popped home to see the children and make sure that my parents weren’t buckling under the pressure.  We couldn’t leave until after his mum’s partner was in bed, just in case he fell, getting from bed to chair, so we spent the whole day working, the whole evening working and then left Norfolk at 11.30 last night.  We got home at half past two in the morning.  We are zombies.

 

Having said that, it is wonderful to be in our own home with our lovely children and our very, very comfortable own beds.  The house is clean and tidy and smells of home.  I cried when I came through the door.  It will be very, very hard to go back.

Advertisement