Struggling to get answers

New to Carers Connect
1

Hello, another newbie here who found the forum during never ending googling trying to work out what I should do. Apologies in advance for the long post.

TL:DR, my Dad has been in hospital since Xmas Day and every time we call we get told something different about his current status from he’s fine and will be discharged in the not too distant future to scheduling a visit as he is unlikely to recover. How do we get to speak to someone who can give us answers?

Bit of background, my Dad is 83 and has been in declining health for several years. He has a pacemaker, mobility issues, poor hearing and vision among other things. Although nothing really life threatening.

Things are made worse by a refusal by my Mum & Dad to accept there are any issues. When I suggest having work done at the house to make things easier I get a response along the lines of not wanting the house to look like an old persons house! Against my better judgement they have insisted on staying in a home that is to big for them to manage.

I’ve moved back to the area several years ago, in part to be better placed to assist but I also have my own health issues so I’m struggling to balance dealing with those and not feeling like I’m leaving them to deal with everything themselves. I’ve recently been diagnosed with severe anxiety & stress and have other health issues which stem from that.

On Christmas Day my Dad collapsed. The paramedics arrived within seconds and ruled out a heart attack. He came back round pretty quickly and was able to answer all their questions checking his cognitive function. He had recovered to the point that he was insisting he didn’t need to go to hospital when they were loading him into the ambulance.

He spent several hours in A&E and was eventually admitted to an acute ward. The next day both myself and my Mum had conversations with him on the phone and he seemed his usual self. The next day he phoned my Mum several times and seemed confused, asking to be picked up from work and things like that - he’s been retired for nearly 20 years. From that point on we haven’t been able to speak to him. I assumed at first that his mobile was out of battery and he didn’t realise he had a charger.

We can’t go into the hospital as there is no visiting and we’re struggling to get a straight answer. Following the confused calls we’ve been told various things, at one point they were even talking about arranging a visit as he was unlikely to come back out. But through all of this nobody has been able to say what’s wrong. We’ve been told he hasn’t had a heart attack, stroke or TIA, he’s had a CT scan, possibly an MRI (we’ve been told he was having one, then he wasn’t, then he was again, then he wasn’t). I spoke to the ward nurse about the lack of contact and she gave me a number for a phone by his bed, which he doesn’t answer, but I specifically asked if he was in a fit state to have a conversation and that I didn’t want my Mum being upset if she called him and was told yes, than a couple of days later we’re told he doesn’t even know what his name is.

While all this is going on we also can’t get a straight answer on what happens moving forward. One minute they’re talking about doing mobility assessment as he’s being discharged shortly, the next we’re being told he won’t be coming out any time soon.

My Mum is getting herself in a complete state, a combination of thinking the worst all the time and now believing they are going to send him home in a state she can’t cope with. I keep telling her they won’t just send him home if he doesn’t know what is going on and can’t care for himself but to be honest they way they’re talking I’m not sure I’m certain of that myself.

Everything I read says you can’t have onset of severe dementia that quickly without something triggering it, ie: a stroke or a blow to the head, but all we get told is all the tests are coming back clear.

Feeling pretty useless at the moment and not sure what to do next.

2

In theory, hospitals have a PALS department, for Patient Liason, but I never found them helpful.
When dealing with Royal Bournemouth, as far as my mum was concerned, the best solution was to ring the CEO’s office, speak to his PA, who then kicked the right people to get proper answers I needed.

I’m not suprised in the least that you are now suffering mental health issues, so did I.
Mum was in and out of hospital for years, I’ve lost count of the battles I had.
They live in a “bubble” focussed totally on patients, never seeing the bigger picture.

3

‘Dangerous Discharge’ comes to mind if there is no infrastructure to support the patient at home? I used ‘duty of care’ when I was trying to get help for my late father. I agree it is always a fight though to get help put in place and I can understand you feeling exhausted and stressed.

4

I would suggest that from now on you kept a diary of who you speak to, name, phone number, and status, ie. doctor, PALs etc.

Also keep a note of all the odd things dad has said so far, and then a diary of all conversations with him.

He is 83, and might be nearing the end of his life.

When my own mum was very ill, with tears rolling down my cheeks, I googled “Signs of Dying” and found some articles written by people in the hospice movement. Mum rallied, and lived for 2 more years, but I’m so glad I read the articles, written by people in the hospice movement. They explain how the body very, very slowly starts slowing down. Mum rallied, got better, but each time didn’t get quite back to where she was previously. After a stroke, she couldn’t read, watch TV, or hear properly. We had always enjoyed wide ranging conversations on all sorts of subjects, this ws devastating for both of us.

My husband and I had both sets of parents until our children were grown up, but inevitably that meant we were going to lose them in quick succession. At one time as well as our disabled son, all four parents were entitled to highest DLA care, all nearby, all saying they were fine to everyone else, when they were not!

One died without warning or plans being made.
Avoid this at all costs. I found my husband dead in bed at 58.
Fortunately, I’d already dealt with another death in the family, but the shock was horrendous.
The more you think about what happens from now on, finances, funeral directors, the less you will have to do when the time comes.
A lot depends on finances of course.
Do you have Power of Attorney for both parents?
Do they claim Attendance Allowance - if eligible?
Are their financial papers up together?
Do they own or rent their house?
Are you an only child?

If there is anything practical you are worried about, share it with us, someone should have an answer.

5

Bowlingbun is right about taking notes of who you speak to and when. Ask to speak to a doctor. If you get the same runaround, ask to speak to the Matron in charge of the ward. I find they’re often the best people to talk to if you’re getting nowhere.

I also suggest you have a list of specific questions - all the things you want to know - and keep the phone call going until you have answers you understand. And make sure they know when you don’t understand. I’m used to a lot of medical terminology from my old job and I will either summarise what I think they’ve told me and ask them to confirm if I’ve got it right, or just straight out ask them what they mean.

6

Your dad may have had delirium. It mimics dementia.
When my late husband was in hospital, at one point,the staff hadn’t read his notes about how to treat him with his dementia. The staff nurse asked me if he could be aggressive. Yes he could if staff didn’t tell him step by step what they were going to do. I explained that to her. She them told me staff were refusing to attend to his personal needs! My daughter was livid. Emailed the matron of that ward and to PALs. Matron was mortified and discovered which staff refused ( agency) and told them they weren’t allowed to work on her ward again. So I agree with Bowlingbun and Charles. Matron and Pals are a good place to go. I understand during the pandemic it’s more difficult for you.

7

Thanks all. Got the name of a doctor and have spoken to his PA and asked for a call. Depending on how that goes will see if I need to speak to PALs or not.

‘Dangerous Discharge’ would certainly apply if they are sending him home with worse mobility than he went in with and dementia. It was a struggle to cope with him as he was, although as seems common he refused to engage with anyone outside the family so getting assistance was a non-starter, if he’s now worse it would be impossible, at least without some changes to the home and assistance which would need to be put in place before discharge.

At 83 I’m certainly prepared for the worst, well as prepared as you can be, but its the unanswered questions. To deteriorate that quickly with no explanation is a concern.

I had a look on the NHS site about delirium and that sounds exactly what they are describing and would explain the sudden onset. Looking at causes the NHS lists ‘urinary catheters’, ‘not drinking enough fluids’ and ‘not keeping the genital area clean and dry’. He has incontinence issues and we’ve recently been dealing with quite bad, for want of a better term, nappy rash, he also refuses to drink as much as he should as it just makes him urinate more. I wonder if they’ve given him a catheter as on one occasion we were told he was having a water test but then several days later they were saying they were still trying to get a sample, seems it is not easy to get a sample from someone on a catheter.

8

It’s really easy to get a sample from someone with a catheter, as it drains into a bag!

My mum also tried to avoid drinking as much as she should to avoid walking with her Zimmer frame to the toilet.
I arranged a non smelly caravan toilet next to her bed, but instead she struggled to the loo, and fell over, and was then admitted to hospital, again and again.
Finally I worked out what she was doing.
Rather than move her feet to flush the loo she was twisting round, the bony protusions on her spine would squash the nerves to her legs, and she fell, without warning. In the end, the hospital told he she must never ever try to stand again.
This was the day after the Discharge Nurse said she was “fit for discharge”!
I asked if she had seen mum walk? “No”.
Had she had a full physio assessment? “No”.
On the way home this morning they said that a third of patients in a hospital on the Isle of Wight were fit for discharge and had to be gone by Friday. I can’t help wondering how many had been given a proper discharge assessment???

9

This is very much concerning my Mum at the moment. I’m trying to reassure her by saying they won’t send him home if he isn’t really and / or safe but given the pressure the system is under at the moment not sure I entirely believe what I’m telling her.

10

Just a quick update so as to not leave the thread open ended.

We’ve been able to speak to a doctor today and its not good news. They aren’t really sure what is causing it but he has collapsed again this morning, his blood pressure drops very low and they think that is want has led to the confusion.

It sounds very unlikely he will be discharged and if he does it is likely to be to end of life care as the doctor said even with adaptions to the house we wouldn’t be able to cope and he would need to be monitored for further incidents which would have to be responded to quickly. Also got asked if we want him put of life support if he reaches that point which obviously isn’t a good sign.

I guess at this stage its probably a good thing that he doesn’t know what is going on. Doctor said he isn’t in pain and is comfortable which I suppose is all you can ask for.

11

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.

12

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

13

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… :unamused:

Anyway, I’m hoping for whatever is best for you and your family.

14

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.

15

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.

16

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.

17

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.

18

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.

19

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.

20

Great - that makes it so much easier!