Its been a tough week, think this is the first time I've been able to sit down and gather my thoughts between work and the ongoing situation with my Dad.
Firstly to answer a couple of point raised. I've told my Mum to raise NHS Continuing Healthcare with the doctor but that doesn't seem to have got through, to be honest not sure if she's remembered to ask.
In terms of potential funeral arrangements we have a local independent funeral directors that my family have used for years who are very good so that's all in hand should the worst come to the worst.
The drops in blood pressure have been an ongoing issue, not to anything like this extent but it has been an issue that nobody has ever really got to the bottom off. After lots of testing in the past the advice we ended up with was to just sit it and and to eat ready salted crisps when it happened! He does have a pacemaker and had his routine check recently.
The biggest issue at the moment is that day to day we get wildly different updates on his condition and how this is likely to play out. This is not helped by the fact the hospital have a policy of only talking to next of kin and therefore won't speak directly to me. By the time information comes to me it may not be entirely accurate. My Mum has requested repeatedly that they speak directly with me but so far they have stuck to saying it has to be next of kin. I've mailed PALS about this as I haven't been able to get through to them on the phone, awaiting a response.
Earlier in the week things seemed a bit more positive. They were talking about delirium, as mentioned on here, rather than dementia and talking about him going into some form of care, initially for no more than six months, until he was at a point he was safe to come home. He has had more what they are describing as 'episodes' but they were starting him on new medication to try and stabilise his blood pressure. So we were looking at two more weeks in hospital as a minimum while the new medication takes effect then up to six months in care so they can ensure it is working correctly and he can recover from delirium.
Then at 4:30pm yesterday there was a very odd call from the hospital, unfortunately my Mum doesn't know who from as she isn't noting it down as I've asked her as she's getting too upset by the call. It was someone talking about my Dad being discharged and sent home in the near future. They were talking about my Dad having severe dementia and that every time he got out of bed he collapsed so the plan was to send him home and him be bed bound. This doesn't sound right to me as surely its not safe before you even consider the ability of my Mum to cope. I've said to my Mum that they won't be able to send him home without her agreeing she can care for him - to be honest that's an assumption on my part.
I told my Mum to wait until Monday and phone and ask to speak to the doctor dealing with my Dad and we'd go through what needed to be asked. Of course she's ignored that and phoned again this morning and got someone who is just covering the weekend and didn't really know the situation who has said something different again. However having been told yesterday that he was bed bound when she phoned the nurse said he was up and about and sat in the lounge watching TV. Then bizarrely she went and took the phone to him which came as a bit of a shock as nobody has spoken to him since Boxing Day and we've had weeks of being told he doesn't even know his own name let alone who we are. He was certainly confused, was talking about a house he used to live at for example, but he knew who he was and knew who my Mum was. Was talking about how he didn't understand what and happened and why his health had deteriorated so quickly. This has massively upset my Mum but I've been trying to persuade her its good news really as that surely is a much better repose than him not knowing who he is or who she was.
I really need to get past this next of kin restriction so I can speak to someone and try and push for a clear picture of his current situation and the plan moving forward. Hopefully PALS can hope with that. I do have some papers relating to power of attorney which my parents both had drawn up when they updated their wills several years ago. Might have to look into if that can be used.
