Bedside observations

We are taking turns, me and Helens family, to stay with her in her room at the hospital every night, so that there is always someone by her side, and tonight it is my turn and I am writing this as I am sitting next to Helen.
This morning Helen was extremely drowsy, she perked up a little bit later, but has been extra tired all day. Now in the evening her mind has been running away with her and she has been telling me long, fantastic tales about all kinds of things, and she is herself totally convinced that they are all true.

Helens short-term memory is very damaged, she rarely remember anything more than a few minutes, be it a phone call, a meal or a conversation.
She is also most of the time very confused, rambling, almost deliriously, taking isolated words from recent conversations and spinning wild stories around them.
Parts of her long-term memory is still ok, but mostly memories that are older than 5-10 years.
The confusion comes and goes in waves. Perhaps deep, deep inside she is aware of her situation, but in the confused conversations we mostly have she doesn't show any signs of it.

As much as it hurts me to say it, but if a sane Helen from a month back would view this scene in the hospital room tonight, she would say:
"Enough is enough. It has been three weeks since my epilepsy seizure, you have had plenty of time to say goodbye, now give me that suicide pill."

Sometimes when I am alone with Helen and she calms down we can have "normal" conversations, when she is almost clear-minded.
I have had a couple of these conversations with her over the last week and we have touched on the subject of her death.
She says the most wonderful things, like "Here in life we walk next to each other for some time, and sometimes we simply don't get a lot of time." and "We have had some very good times together and some very bad times together, I think I have lived a lot in my 33 years." Helen told me that I must find someone new to love and that "she must bring chocolate into your life" :)
She says that she has understood for some time that the treatments haven't been working and that she is very tired of them, and she is looking forward to getting rest.
For me it has been extremely calming to have these conversations, to realise how at peace Helen is with dying.

The hospital is discharging Helen tomorrow and she will be coming home to our flat to spend her last time there.
They have put a proper hospital bed in our flat, a new wheelchair and lots of various other aids to help care for her.
They have also removed a basin and the tub from the bathroom, so it will be possible to access with the wheelchair.
And there is a home-care service that will come a couple of times per day to help with basic needs, and a nurse that will come to administer medicine.
And we get a special alarm we can use to call for help in emergencies.

So me and Helens mum can spend our time looking after Helen and serve her all the treats she asks for :)

Hey God

I treat you with some scepticism. I actually have quite a bit of a spiritual streak in me, but I have turned away in contempt from all the "organised religions" that have become more of political organisations, interpreting the "bible" in their own way so as to gain more power, wealth and control over people.

So yes, I have great doubts about you, your existance, and frankly, your skill at running this place.

I believe that you have been involved in the creation of all the people in this world, and I do believe that you love them all.
I can tell you, as if you didn't know, that at the moment a great deal of these people are sad for my wife Helen.
It is in your power, with one single act, to make these people a lot happier.
I know I don't need to tell you what I am asking for, and I know that what I am asking for is a really tall order.
But I know that you have it within you.
If you are an omnipotent God, with the power to affect everything, then my oh my how you have chosen to test me over these last couple of years.
I don't know why, it is not as if I am a nasty person or anything, I don't see what I have done to deserve this, and don't give me that nonsense about how incomprehensible your ways are, your management skills are at best questionable, just look at the state of this planet.
Part of me wants to be really angry at you and hurt you, but on the other hand perhaps you just don't have very much power. And you are soon about to meet my beloved Helen, and she is going to give you an earful, you can _believe_ that.

I am not testing you, you do as you please. But you have the power to fix this. Just this one thing.

/Dan

Not good news this time

I haven't written here in over one year.
We have had a very tough year, Helens cancer came back in August last year and she has been getting treatments ever since. It has been quite a lot of treatments and for some periods she has been quite ok, but now she has gotten much worse and she had an epileptic seizure one week ago.

The doctors are now convinced that there are no more treatments that will have much effect on the cancer. Treatment is now aimed at pain relief and a vague estimate is that she can live perhaps another 2-6 weeks, with increasing confusion and decreasing alertness.

Helens mind is already clouded, her memory is poor and she suffers greatly from confusion. She is not aware of how seriously ill she is and she is not in pain and her cheeky attitude still peeks out now and then. Her parents, sister and one brother have travelled here to Sweden, and she still recognizes everyone, and I am so happy that she has gotten a chance to see them before it is too late.
It is a strange feeling, the person in front of us in the hospital bed is 100% Helen, but still there is so much missing. And then the knowledge that soon she will not be there at all and that all we will be left with is the memories of her.

I am preparing a small book about Helens life. If you have any memory or story about Helen, if you have any greeting you want me to convey to her (I can also set up skype calls), or if you have any photo of her, then please email that to me at this address wordsformelly@hotmail.co.uk
Also send me an email on that address if you want a copy of the book when it is completed.

with many tears
Dan