Making decisions

It's hard to know what to say about how life is surrounding my dad right now.  For the past 3 days he has remained in his bed and sleeps more hours than he is awake.  I do my best to offer him snacks and any kind of food that he will eat, mainly sandwiches with all the crusts cut off and cut into bite sizes.  The most he has been taking in a day is half a sandwich.  He still manages to eat his favourite crisps and because he is sitting in his bed, I put the crisps into a bowl so that he doesn't cover himself in crumbs. When he gets to the end of the bag he turns it upside down onto his hand.  Any remaining contents usually find their way onto his jumper.  He wonders why he is in good favour with 'dug' who creeps up beside him, licking her way up his jumper hoovering up the crumbs with her tongue!

I've taught him how to pick them up by licking his finger and chasing them around the bowl until they stick.  He looked at me wide eyed, showing me his sodden finger covered in crumbs and smiled.

"I've learned something new today!" he said.

That was a couple of days ago.  Yesterday he didn't finish his crisps and ate even less of a sandwich.  He managed to get up from his bed to let me take him to the toilet.  He struggled to steady himself but he held onto my arm as we walked the short distance from room to room.  Every time he questions me as to why he now needs help to go to the toilet and every time I give him the reasons in a manner that he'll understand without getting too technical.  It sounds terrible but I have to watch through the crack in the half open door so that I can see when he's about to stand up.  I always tell him to call on me before he does this and he'll say "Right, okay," but he never does.  I still ask, just to let him know that I'm right there.

One time I thought I'd have time to put a load of washing into the machine before he would need me.  I only took a few minutes and by the time I'd gone back to watch him through the door he was already standing and pulling at the net pants that he now wears.  He has no caution or awareness of the catheter tube and the pants can be easily caught on the connection.  Dad isn't gentle when it comes to doing things.  ANY thing.  My struggles when showering him would see us in a tussle over the shower head and the drying process meant aforethought to make things easier...for me!

The trick is to keep his hands occupied with something while you carry out whatever duty needs done with as much speed as there is care.

There have been no such tussles of fights lately.  All I can do is watch him from the living room on the little monitor while he sleeps and listen out for any change in his breathing.  I don't wake him up unless I see him stirring then I go and offer him a drink.  I keep blackcurrant and apple juice by his bed.  If he coughs during the night I go and make sure he takes a few sips.  He still isn't drinking nearly enough and his urine is very bloody.

I've sat at the bottom of his bed with 'dug' as he sits halfway up watching the TV.  I sit with my laptop and go between watching my own stuff and commenting on what dad is watching.  Mostly he is not paying attention and simply nods off to sleep again.  I sit until I no longer see the point and leave him to rest alone for the remainder of the night.  I'm not sleeping too well at all as I am afraid that I won't hear something that I should.

I am finding this time of his care the most difficult.  Mostly because I feel like I should be doing more or fear that I have missed something.  I'd do anything to be able to take him out in the car and go for our usual coffee and cake.  There's a strange realisation of so many simple things that won't ever be again.  He's still here...still breathing...and comfortable.

I'm still here...still breathing...

I've put an end to the Guardianship process.  Finally after months and months, a mental health nurse was due to visit around the 24th April.  I also had another visitor from the hospital.  I can't remember her title but she simply came to verify that there was just cause for dad's welfare and finances to be taken out of his hands and placed in mine.  Another appointment was due for dad and I to go and have an 'interview' with the GP but this isn't possible now.  I explained to his secretary about the circumstances and said that I doubt very much that my dad will be around for the conclusion of the Guardianship and to be honest, I'm not really sure what benefit it would be to me any more.  She totally understood.  I decided to call the solicitor to explain my decision.

This wasn't met with nearly as much compassion.  In fact, it was met with absolutely none at all.  She gave me a whole lot of legal jargon.  I said that I didn't think a piece of paper was going to make any difference to anything I'm doing for my dad any more.  All of the district nurses and doctors and any other individual who has had to visit in the last few months for whatever reason have given me no cause to worry that any decisions made on my dad's behalf would be questioned.  In fact, quite the opposite.  It is them who have been extremely grateful for my own personal understanding of dad's care which means they aren't dealing with a nut case of a daughter who can't see the reality of the situation and wants to question everything they put forward.  I am more than happy that when the time comes for me to need to ask for additional support that it will come without issue.

The solicitor said "I don't know what you're doing to pay the bills but if you're going into your dad's Bank Account without his consent then that's illegal."

How the fuck do you argue with that??

I told her that all of the bills (not that it's ANY of her bloody business) are in my dad's name and come out of an account where his care allowance goes into.  The monthly monies paid in are sufficient enough for the bills to be covered so I don't need to worry about that account at all.  When he's no longer here, what would that matter?  I'll have to start everything all over again anyway and close his accounts down.  The other thing she mentioned was his care and the decisions I might have to make later.

"Even though you seem to have everyone agreeing with you for now there might be something later that you're not able to decide for him," she went on.

I told her that ever since my mother died it's been nothing but appointments, solicitors, red tape and ticking boxes.  All of this has totally overridden the personal side of our lives.  Real emotions being trampled on by worry and stress.  It needs to end.

"I'll cross all my bridges one at a time," I said.  "I'm absolutely beyond the point of caring any more.  I'd like to be able to care for my dad from here until the end without any more paperwork."

"Well," she said, "if you discontinue now you won't be able to do it again without starting from the beginning."

HE WON'T BE HERE FOR THE END OF THIS ONE YOU DAFT COW!!

So that's where I'm at right now.  That...and waiting for the Gas Engineer to call so that we might have some heating and hot water before this day ends!  The shower isn't electric so I'm stuffed at the moment.  Dad's tucked up in his bed and snoring under his duvet.

This is the worst part.  The unknown and the days ahead.  I can only think one day at a time.

Sometimes the worst place you can be at is in your own head.

One day...it will all make sense.