The Last Days At Home

5 minute read time.

The Tuesday after the fundraiser was strangely quiet.  Gordy spent virtually the whole day in bed as he was completely exhausted.  He was wedging his feet up against the wall at the head of the bed to try and ease the swelling.  We tried to put together a leg rest with the washing basket and pillows but as soft as the pillows were, they still hurt his skin.  How he managed to sleep with his feet up against the wall I do not know, but sleep he did.  People were sending him messages on Facebook and SMS texts but Gordy couldn't use his mobile anymore and had forgotten the password to get into his laptop.  His frustration was heartbreaking.  He got up a couple of times for something to eat, but ate very little and could only manage complan drinks.

Wednesday dawned and Gordy was extremely disorientated.  He couldn't remember if he had taken his medication and we couldn't find the drugs list and didn't have a clue what he should or should not be taking.  He had been so fiercely independent from day one of his diagnosis and had dealt with everything himself, refusing to let any of us help him.  He was in so much pain he was drinking Oramorph like lemonade and we knew we had to get help.  I called his Macmillan nurse and she came straight out to see him.  Now while I have to say that I have nothing but admiration for the work that Macmillan do and the support and help they give sufferers and their families, I have never met such a patronising, condescending woman in the whole of my life.  She spoke to us as though we were complete idiots and to Gordy as if he was a 3 year old.  I know he was confused but I thought her manner was appalling.  At this point I apologise to all Macmillan nurses who are good at what they do but I can totally understand why Gordy avoided her like the plague throughout his illness!

Following a lengthy discussion Gordy agreed to his medication being administered through a pump drive with the phrase, "Let's crack on then".  I knew then we were almost at the end and the look in Gordy's eyes told me he knew it too, but the rest of my family didn't seem to realise just how serious things had become.  Gordy came into the kitchen with me to have some breakfast.  He ate a couple of pots of yoghurt and some blueberries.  That was the last meal he had.

The community nursing team came out to fit the driver and within a couple of hours Gordy was sleeping almost continuously.  As Gordy did not want to go into hospital and there were no places available in Teesside Hospice the team arranged for a bed and commode to be delivered.  The bed arrived almost immediately and they put it into the living room.  We decided not to bring him downstairs at that point because the commode had not been delivered with the bed and they said this could take a day or two!!!!

We took it in turns to sit with Gordy but he was asleep most of the time.  Late afternoon he tried to get out of bed to go to the lavatory at the only point when there was no-one sitting with him and we heard the most appalling bang.  I raced up the stairs and he was completely disorientated, not knowing where he was or who I was.  Mam came up and we managed to get him to the loo but couldn't get him back into bed properly.  Dougy came over (thankfully him and Paul were staying with Dougy's ex-wife who lived just over the road) and helped us to get him comfortable.  I started to panic a little but kept quiet.  I knew without a doubt that we were in for a very difficult night as the Marie Curie nurses would not be coming until the Thursday night.

Later that evening Gordy couldn't get out of bed but so desperately needed to go to the loo.  Thankfully Dougy was there and he helped Gordy to use the bottle that had been left but he was so distressed and convinced he was going to wet the bed.  I felt like screaming.  Why had they left Gordy and us alone - we were not coping at all.

At midnight I sent Dougy downstairs to get some sleep with Mam.  We were all exhausted but I said I would sit with Gordy until 4am and then we could swap.  4am came and went as Dougy and Mam were sleeping and I thought it best to leave them as long as possible so they were rested.  At 7am Gordy woke up in a complete panic.  Mam was just coming up the stairs and we managed to get Gordy to the loo where Dougy took over.  We could not get Gordy back into bed so we rang for Paul to come over to help.

At that point I knew that Mumsy and me would not be able to cope as Paul was going back to Dubai for a few days and Dougy would not be there 24/7.  Although it absolutely crucified me to do it, I called his GP and asked for Gordy to go into hospital.  His GP agreed that there was no way on earth that we could cope.  Although Gordy had lost an extreme amount of weight he was over 6 feet tall and still weighed too much for me or Mumsy to lift him. 

I then had to get home because I had a cake to decorate for somebody's birthday.  While I was at home Mumsy rang me to let me know that the GP and the Macmillan team had managed to get Gordy a room at The Butterwick Hospice in Stockton, just over the river from Middlesbrough.  I cried with relief as I knew how good the hospice was as one of my Aunties had passed away there some years ago.  So Dougy took Paul to the train station and then he and Mumsy went to the hospice with Gordy.  Even now I do not know why Paul went back to Dubai that day.  All he said was he had to go for business purposes but would be back on Monday.  I knew Gordy wouldn't be with us on Monday but didn't say anything as I felt at that point that Paul was running away, and to be honest I still feel that way.

The cake got collected and I got myself ready and went to the hospice to spend the night with my lovely brother.  But that part of Gordy's story will have to be told in my next blog post as I can't see for tears now.

Thank you for reading.

Much love and big squidgy hugs,

Nin xxxx

Anonymous
  • FormerMember
    FormerMember

    A heartbreaking blog, Nin ....... sending you a big hug.

    Love, Joycee xxx

  • FormerMember
    FormerMember
    Oh my love, I'm in tears reading this and feeling so sad for you all. Your an inspiration. Mandy.xxx
  • FormerMember
    FormerMember

    I'm so sorry for the fear and desperation you all felt....I can sense it so clearly through your writing and remember the stomach churning panic from the steps on my Dad's journey to The End.  Every day dawns with a new struggle in that time doesn't it?  Nothing is predictable on those days apart from the uncertainty and fear of being unable to solve the problem or help.  You did so well though to enable him to stay at home for so long and I am sooooo glad he got a Hospice place....they're so very hard to get round here too....but I am convinced they make a massive difference to everyone's experience in the last part of The Journey.  My Dad sadly died in an understaffed Hospital which has added to the heartbreak of it all.  I am happy though that wasn't the case for your lovely brother.  I can totally understand why you need to write this in stages....it's so painful but necessary to revisit the whole experience to slowly come to terms with it.  What is always so very clear in your words is how much you and your Mumsy love Gordy and how you did everything possible to comfort him and ease every and any kind of pain he felt. 

    With much love and sympathy from one heartbroken daughter to a heartbroken sister  XXXX

  • FormerMember
    FormerMember

    Hi Everyone

    Sorry for making you cry and I wouldn't blame any of you if you just passed my future blog posts by but I really do need to get this out.

    Tim - I know Gordy should have been in the hospice earlier but he just refused point blank to give in until there was absolutely no alternative.  His courage was amazing but watching him suffer so much pain and discomfort just to stay at home with us as long as he did was heartbreaking.

    Sparkles - I am so sorry that your darling Dad passed away in hospital.  I'm totally in agreement with you regarding the better care end of life patients receive in hospices.  I truly think that the government and hospitals need to rethink their policies on end of life care and have dedicated wards which are fully staffed for such purposes.  Sadly that is something I don't think I will see in my life time.

    Much love to you all and once again my sincere apologies if you are finding my blogs too upsetting.

    Nin xxxxx

  • FormerMember
    FormerMember

    Oh Nin, please don't apologise ever for them being upsetting... we sort of cry with you if you know what I mean...it was so beautifully written and its more feeling with you...  you need to say it and i think it helps others too... so keep blogging and we'll keep reading.

    biggest hug to you

    Little My xxxx