This is the title of one of my favourite novels. It also seems to be the way PSP works.
A little more than 15 months after the final diagnosis, Bugs died at 6.30am yesterday. She had been in hospital since mid October. Firstly admitted because of urinary retention, then developed UTI. A CHC assessment was completed and eventually rejected. Meanwhile the care package was being sourced and when finally in place, another UTI prevented her discharge and the package went elsewhere. In the meantime Bugs condition worsened - hallucinations and aggression towards staff, rapidly reducing ability to eat, speak, mobilise - just about everything.
I was able to persuade the ward Sister to look at the CHC again as I felt circumstances had changed. Guess what, every category bar 1 was upgraded (2xA, 1xC and rest B's) That same afternoon the Neurologist visited Bugs and advised that she thought things had moved so fast the a palliative care regime was now appropriate. Tear up CHC and submit Fast Track application.
So many false hopes- typical PSP
I was in shock. Bugs swallowing had become almost non existent and so PEG was the only real option. Bugs had always refused this in the past but this last meeting with the Consultant might have indicated yes. However, Bug was so confused with the dementia like symptoms that they felt she lacked capacity. I had 4 meetings to try and fully understand this but finally had to accept the clinicians view that the benefits - v - the risks were such that it was not worth proceeding. It would have given some longevity but so many things had gone , not just downhill but off the cliff edge, that improved quality would not happen.
Meanwhile CHC arrived along with hospital bed etc. Cats loved the air mattress - jumped on and started kneading/ treading. Little claws - they didn't give me a puncture repair kit. Told Bugs this and got a brief smile, nothing more. By the time everything was ready, Bugs was too ill to come home.
Last Friday, Bugs seemed more distressed than usual and I was worried about dehydration again but the Doctor said she was not and a final discussion about IV fluids took place. The Doctor (he looked so young that I thought he might not have started shaving but has was actually the most thoughtful and careful with explanations and time) said , just like the PEG discussion, that it would not benefit Bugs. To help her, they introduced medication via a syringe driver and from last Sunday, Bugs never awoke. I stayed at the hospital from Tuesday so know she was ok and well cared for.
I am still trying to understand my feelings. At the moment, I am inclined towards giving thanks for this final phase being relatively very short. I expected some of the symptoms to worsen gradually but everything just crashed. When I left yesterday, arrangement were being made for brain donation. I hope this final act will help others in the future.
Why the title, it occurred that this is PSP. It just chips away at the person. Little bits are lost day by day. Someone asked me yesterday if I was ok coming back to an empty house - well I have been since mid October when Bugs went into hospital. More than that though, the person in the armchair all this year was not the Bugs I married nearly 40 years ago - little by little things changed certainly over the last 6 years and probably more. I have been saying goodbye for many months/years.
I am writing this from a carer's perspective. I know many of the people with this illness read and contribute and I am truly sorry if anything I have said causes upset. It is just my thoughts.
I have never been in a position to offer the advice and information that many of you contribute - not through lack of knowledge but experience. Now I have a great deal of the latter so maybe I will be able to add something in the future.
I read earlier comments about Christmas greetings. There is a pile of cards in the lounge. People mean well. I just wish all of you "a good as it can be time" over this season and into the new year but above all, times of peace.