Documenting where we are quickly before it changes again!
Forewarning; the following text will have chucks of info missing for privacy's sake, but it's as good as my currently fucked up brain can give.
Dad has symptoms that have got out of hand in the last week. They are not pain issues, but other symptoms. Some caused by the breaking down of his body and others by the breaking down of the mind.
Dads care needs are now more than one person can handle physically. (OK, one overly skinny bird in her 60's with a back problem and her not so overly skinny crip daughter, which probably equals one whole healthy person).
The hospital team wants to make plans for discharge. There are only two options available to us, bring him home or put him in a cottage hospital.
Everyone agrees that even with 3 carers a day, mum and I will not be able to manage his care at home and that a cottage hospital is best option.
Sorted, right?
Wrong.
We have had 2 days of Dad begging and pleading for us to bring him home. Today we had tears, Dad isn't a crier and he doesn't emotionally blackmail either. He is terrified, missing his family, aware of his limited time and feels lonely and insecure. He is desperately unhappy, which, in turn, is making us desperately unhappy and the guilt. oh my god the guilt is like a thousand Cliff Richard tracks all playing at once for 49 hours non stop.
Tomorrow at midday mum and I have a meeting with the specialist, OT, Physio, Social Work etc etc to discuss where we go from here.
I've just spoken to mum on the phone, neither of us can do this to him, neither of us can live with ourselves. If he is to come home then we demand all eventualities covered. We want a nighttime phone number to call for nursing help if needed. We want help to be with us asap at anytime of the day we need it. 3 carers a day just won't cut it. Whether or not our demands will be able to be met is another matter, but we will call their bluff and not back down and see what happens.
I just couldn't convincingly go into that meeting tomorrow and demand that he be kept in a hospital and neither could mum, because our hearts are telling us otherwise. We will still look at it as an option, but right now I feel the guilt of breaking his heart far out ways any physical or mental exhaustion we would feel if we nursed him at home. If we are told there is no back up support available for us 24/7 then.... well I just don't know what we'll do other than cross that bridge when we come to it.
Oh, and I have Tem@zepam. After 3 hours sleep in 3 days driving was becoming a problem, not to mention shivers, increased muscle spasms, flu like symtpoms, diahreah (your welcome), permanent headaches and that weird thing where you constantly bounce your leg up and down with your toes and are not aware of it until someone asks you to stop wobbling the table. I finally gave in and went to the doctors. If I don't get decent sleep soon I will ceases to function. I only intend to take one every 2 or 3 nights to ensure at least 3 nights of decent rest a week, it's not the type of drug I like to take, for obvious reasons and I don't feel totally comfortable with it, but I can also see my mental health is heading for a scary place at the moment, I can't afford for that to happen.
I can not believe how much writing this blog is helping me, I always thought people were sad to saying that! It's become a necessity for my sanity, you will probably get not much else but this journey in the near future, I need to use this place as a tool for my advantage, I completely understand if you feel the need to step away from the journey, no hard feelings, just remember to pop by in a few months with coffee and kitk@ts.
