What can I say? Your love and support, over the past few days has totally overwhelmed me.
Steve's last few days were very peaceful. He slowly drifted away. Boxing night, he started to show slight discomfort, so a shot of morphine was given. He never really was awake after that. A driver was attached on Tuesday morning. We spent the day, cuddling up to him at various times. He was in his own bed, so plenty of room for all of us. Early Wednesday morning, my sister popped her head around the door, to see how we were. Noticed then that his breathing had changed, my daughter came down and confirmed the end wasn't far off. So we got his daughter up and phoned his son. Five minutes later, after a few gasps, I told him to let go and that I loved him, he breathed out and was gone. Unfortunately, due to the hard frost that night, his son arrived a couple of minutes too late.
We all have to die, I would like to think that Steve got it as perfect as it could be. His daughter had to fly back to the States that day, his son due to leave for Scotland. So both got to say goodbye at the end. To see him at peace, in his own bed, after all the suffering of the past six years, is going to be a great comfort to all of us.
How am I now? Don't know is the truthful answer. Numb, tears have dried up. I have spent the last six years crying, perhaps there is no more left. No doubt tomorrow will hit me, have to start doing the official stuff. All I have managed to do so far, is sort the undertaker, arrange the date for the funeral and register the death. This has to be the only downside of dying this time of year, nobody is at work.
Tonight is the first time I have been on my own. I thought it would be worse, but thanks to Steve going regularly to respite, I am, sort of use to him not being here. I did get rid of all the crap equipment, straight away, it's all in a spare bedroom. I can cope with his personal stuff, but everything with PSP on the label, is out of sight. The car has to go next, but obviously got to sort the finances out first.
I am reading all the posts, sorry I haven't replied to any, but I am sure you all understand. The journey Steve and I have been on with PSP, has been hell. The one thing that I definitely got right, was that brave move, all those years ago, when Steve was first diagnosed, join this site. There is NO WAY I would have survived, without the love and advice from you guys. The knowledge I have, came from here, the strength to get up and carry on each day, you made me do that. AND that huge shoulder to cry on when things got really bad, well words can't describe. I would love to name everyone, but know I would forget someone, so forgive me, but I do have to name a few, that have been very special. NannaB, Easterncedar, Goldcap, Jzygirl, GeorgePa, Jimbo, Strelley, SABean, Debbieann, Rolley, the list goes on, with a special thanks to Peter Jones, who's non stop humour as got me through many a dark night.
I will run away as far from PSP as I can get, but I am not going to desert my friends and life savers. I will still be around.
One thing I would ask each of you to do, in Steve's memory and everybody else that lost their battle with PSP recently. Is take a step back, look at what you are actually doing for your loved one, not the things that you can't do. Realise, that yes, you are doing a brilliant job. Looking after a person 24/7 on your own, is extremely hard,,yet each day, both of you survive. Only one person is making that happen, that's YOU!!!!
I don't know what else I can say, except thank you from the bottom of my heart. It's been a privilege and honour to share all our journeys.
Lots of love