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Struggling to get answers - Page 2 - Carers UK Forum

Struggling to get answers

Tell us a bit about yourself here.
I'm sorry to hear that dad is so poorly.
Now is the time to ask the doctor to arrange NHS Continuing Healthcare for him.
This would then mean it might be possible for dad to be transferred to a nursing home near your mum, so she could be with him more.
I would urge you to consider final arrangements at this point.
Find out the charges of the local funeral directors, and how much your parents can afford.
I know this is all horrible to think about, but situations can change very fast and you need to be prepared for the inevitable.
I too am sorry to hear that.
It is better knowing than wondering what could be wrong . The it's and buts are extremely stressful as you know x
The sudden drops in blood pressure are a worry: did they say anything about his heart rate? A few years ago my Mum had similar issues and it turned out that her heart rate was dropping almost instantly from 60bpm to 15bpm, cutting off blood flow to her brain so that she passed out. It would reset after a few minutes but they gave her a pacemaker. Problem reduced, if not entirely solved.

The Do Not Resuscitate thing comes up all the time, just in case. It's not necessarily a bad sign, although taking everything else into account, it's not looking good. But it's something they seem to discuss automatically when people are over 70. Because, I suppose, anything can happen, and the older you are, the more likely it will. Something to look forward to... :roll:

Anyway, I'm hoping for whatever is best for you and your family.
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.
Definitely time to use that Power of Attorney. It gives you an absolute right to be treated in the same way as if you were your dad. Full disclosure. Print off a copy, give it to the hospital and ask for a copy of his full notes for the last week, in an accompanying letter headed "Subject Access Request". This is a legal request that must be complied with, within a month!
Insist that the hospital communicates with you, via email ideally, so you have a written record you can share with mum.
It very much depends what your Power of Attorney relates to. If it's finance and property, no way is it going to help. If it covers health and wellbeing, you're in.

To be honest, if the next of kin (your Mum) is asking the hospital to deal with you, that should sort it. It certainly worked for me when my sister had her last spell in hospital. I suggest you sit with your Mum if you can when she phones to talk to the doctor and you sit in on the call on speakerphone. She can tell the doctor there and then but you'll still know what's going on.
bowlingbun wrote:
Sat Jan 15, 2022 3:59 pm
Definitely time to use that Power of Attorney. It gives you an absolute right to be treated in the same way as if you were your dad.
Typically the solicitor who with all this and who holds the papers is on holiday and is a bit of a one man band. I'm sure I've got a copy somewhere so time to get in the loft and find it and see exactly what it covers.

Edit: been in the loft. I have two sets of power of attorney papers for each of my parents. One for property & financial affairs, the other for health & welfare so that should defiantly cover the current situation. There's also a note which states it applies based on the situation at the time the person needs to make a decision so even if it is something like delirium from which he will reoccur this still applies which he isn't in a fit state to make his own decisions.
Charles_2112 wrote:
Sat Jan 15, 2022 4:05 pm
It very much depends what your Power of Attorney relates to. If it's finance and property, no way is it going to help. If it covers health and wellbeing, you're in.

To be honest, if the next of kin (your Mum) is asking the hospital to deal with you, that should sort it. It certainly worked for me when my sister had her last spell in hospital. I suggest you sit with your Mum if you can when she phones to talk to the doctor and you sit in on the call on speakerphone. She can tell the doctor there and then but you'll still know what's going on.
I need to get in the loft and find what it covers. I understand they can't just discuss things with anyone but when my Dad is in a state of confusion and my Mum is asking them to deal with me it seems strange they make it so difficult.

Being realistic if they are talking about sending him home and him essentially needing 24/7 care how on earth are they expecting to sort that without invoking others in the family and just leaving it up to an elderly woman.

Edit: power of attorney covers health & wellbeing so need to point that out to them and say they need to speak with me.
Wonderful news!

Some hospital staff may not understand the full implications of a POA, if this happens, just tell them to have a word with their management.

Alternatively, go to the Office of the Public Guardian website and they will have full details there.
Great - that makes it so much easier!