As you will know from my Dad, Georgepa's post we have had an exceptionally horrible couple of weeks as my wonderful Mum V enters what appears to be the final stages of PSP.
As Dad described - what a rollercoaster ride it has been, truly awful for my poor Mum and equally awful for my lovely Dad. As their daughter, it has been 2 weeks of adrenalin, anxiety, huge sadness and this horrible feeling of limbo.
Obviously when Mum went back into the Hospice, my husband and I went down to Devon a 4 hour hour car journey, not knowing what to expect and whether we'd even make it in time. Mum came home and we spent several days sitting around her, with her, some days she was "present" other days she really wasnt.
Thankfully Dad and I have been honest with each other from the start of this horrible illness and we decided that Guy & I should come home, what could we actually do? Yes, make endless cups of tea, cook food no-one really wants to eat, be company and support for each other but ultimately it felt like we were sitting around waiting for her to die and that wasn't how we wanted it.
So as a daughter, you then come home filled with guilt (unnecessary guilt I hasten to add) you jump every time the phone rings, you get up in the middle of the night to check all your phones incase for some inexplicable reason they decide to stop working. You simultaneously cheer every time you call home and get to hear your Mums voice but then come off the phone & sob because it might be the last time you ever hear it. You don't make any plans in case your needed at the drop of a hat. Then you wonder if you should be putting your life on hold?
Do you let people know what's going on? Do you wait until you know "this is it?" How do you answer the questions "how's your Mum doing?"
As a self employed Life Coach, I've re-scheduled my clients - how can I be inspirational, motivational and generally upbeat when you're listening out for the phone and when their problems seem like minor irritations compared to what you're going through? Do I book work back in only to cancel it to race down to Devon?
All these questions go through your head constantly as a daughter living too far away right now. All I really want to do is be with my Dad, to hug him, to tell my Mum I love her as much as I can but there have been so many people at home, all doing wonderful jobs of caring for my Mum that it just feels too crowded, the wrong thing to do, she'd hate it. The truth is Mum and Dad need some time together and I really want them to have that but what is best? What is right? Where's the sodding hand book that tells you how to deal with this?
I don't know any of the answers, Guy and I will be going back to Devon in the next couple of days unless we're needed sooner. I'll hug Dad, tell Mum I love her and take one day at a time because that is all I can do, all any of us can do.
So to all sons & daughters out there, I feel your pain, your helplessness, your huge sadness at losing a parent. If you're a long way away, don't beat yourself up, do what you can, you can only do what you can manage and I'm sure you're doing your best!