Please forgive me for the delay in sending this. As you read on you will hopefully see why.
We had a wonderful Christmas Day. Jeremy was hilarious and very witty. We all kept collapsing in fits of giggles. He managed to get downstairs for both brunch and late afternoon Christmas dinner. This was amazing as he hadn’t been able to come down the stairs or sit at the table for a few weeks.
However Boxing Day dawned a different day and he fairly rapidly deteriorated over the next few days. On Friday December 30th I woke early. (Jeremy had been unable to climb the stairs the two previous nights so had remained in the spare room on our middle floor. He also had not had enough energy to get to the bathroom for a shower, use the toilet or generally move about.) I remember sitting on the stairs waiting for him to come out of the bathroom. It surprised me that he had got himself there. He was ages in there and I became increasingly worried. Eventually I tried the door and it was locked. After calling his name I discovered that he had had a fall. So there he was, on the floor locked in the bathroom. Panic took over but eventually I got him back to bed. Then the next challenge of the day was getting him into the bath. I did but Tom and I really struggled to get him out.
The result was that when our wonderful community nurse visited from the Hospice I landed in a heap. The decision was made there and then to get him to the Hospice. It was with a mixture of relief and sadness. Having left him there I came home and the tears fell as I realised we had reached a very new stage.
It has been amazing having the Hospice taking over the daily nursing. This had got too much for me to manage. It has also provided me with the chance to go to school which for me is such a lifeline.
Here we are today, two and a half weeks later and Jeremy is needing help to fulfil every small daily function and I am sitting typing this next to him. He had a massive seizure on Wednesday night and as a result, since then, one of us has slept at the Hospice to be near him. The last 3 nights we have had the wonderful opportunity for Jeremy to have a private room with another bed in it. Tom occupied it for the first night and I have for the past 2. I have had the best nights sleep since Ben died. I will sleep here again tonight.
The plan is to move him to a nursing home in Alphington on Monday (tomorrow) for his final few weeks. I have been advised we are probably looking at 3 weeks maximum. Alphington is where Jeremy was vicar up to 5 years ago and where Ben is buried. It is where Jeremy will finally be put to rest so this feels like a good move. One of the carers there told me that she had nursed Ben in ICU.
I continue to go to school – my safe place. I am trying to maintain mornings. This is a good balance and only made possible with Jeremy being cared for away from home. Lydia has been travelling the country for interviews and we are so proud of her that she has been offered a conditional place at my old college, BGU, in Lincoln. She has had positive feedback from others but not had firm offers yet. Wonderful that while Jeremy still has a bit of cognitive ability, he has been part of the celebrations.
The boys continue to carry on their lives whilst being aware of everything happening with their father. Simeon has been such a wonderful support to me, helping me choose a nursing home, visiting Jeremy daily, particularly at times that I am unable to. He has been ferrying people around, especially picking up Tom at 1.30am on Thursday after Jeremys seizure and delivering him to the Hospice.
We are looking to the future, aware it will be different, but trying to make positive plans. We are all facing quite significant decisions at this time regardless of Jeremy’s condition.
Thank you for your continued love and support.