So last night was horrible, I went to bed ready to sleep and feeling exhausted and then all of a sudden a massive feeling of dread and panic washed over me, and 1000 thoughts went rushing through my head, after getting up and having a cigarette, then going back to bed, then getting up again having some paracetamol and more cigarettes I finally calmed down and got some sleep (albeit disturbed), then this morning looking on this site it was suggested that writing things down, my thoughts, my feelings, my worries as it may help to off load, even if it is to a laptop and you won’t get any response…. So here goes….
The lyrics to Queens “ The show must go on” springs to mind, specifically “Inside my heart is breaking, my make-up may be fading, But my smile still stays on”……..
I am so worried about everything and feel guilty that a lot of my thoughts are selfish and just keep thinking “WHAT IS GOING TO HAPPEN TO ME!!!????”…
I am so worried that I don’t know how much time we have left together, he hasn’t been himself for a while now, and feels like he is getting worse and worse by the week (especially the pain), and we hear “he might have an infection” so more medications are thrown at him “it could be exhaustion” well duh!!! He hasn’t slept properly in months of course he is exhausted!!! But my worry is… is this part of the progression of the disease? Is it just down hill from here? Why can’t they sort out the right meds so he is not in pain???
Then my mind goes to, we still have a lot to discuss and sort out. We need his will to be put into place. We need to tell family and friends! I feel by not telling them I am robbing them of time, but then I need to support and abide by his wishes. Does he want to plan his own funeral or just leave it to me?
Then thinking specifically about the will, if it’s not in place then by law what I will be left with will be substantially reduced which comes with its own worries.
Also should he have an Advance Directive and give me power of attorney just in case the situation deteriorates fast, but when is the right time to do this and have these conversations, am I just trying to do too much too soon?
And what is going through his mind, how does he feel? Whats his thoughts? Worries? Concerns? Or is it just a case of hi, wanting the pain to go and doesn’t have the capacity or inclination to deal with anything else!
Then my mind jumps to the selfish part, What about me??? I don’t want to be alone! I don’t want to have to start again! What about the house??? I will need to sell but then where will I live? What about all our possessions? They won’t fit into anything I can afford so do I sell them? Throw them away? Give them to charity?
Then there are the thoughts of having to stay in our home for months alone whilst I sort things out and sell the place… the thought feels me with dread.
Then after all this and more comes flooding into my head, I realise that am being selfish he is here still and we need to make to most of what time we have left together.
I have been offered a job to start on the 12th October, money isn’t great but it will pay the mortgage at least, and have another interview on Monday, and think that job will be better for me (more money too) if I get it, but then I am thinking is this the right time to return to work, shouldn’t I stay home and care for my husband and spend as much time together as possible, but if we have the full 12 months left then if I don’t work all our savings will be gone and we could lose the house.
It’s hard to know what is the right thing to do…… I want my mum lol
Well I think that’s a lot of my worries and concerns although there are always more. Strangely I do feel a little better although there are no answers and there are likely to be a lot more questions, but hopefully for today at least this has relieved some of my anxieties.
