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Carers UK Forum • Struggling to get answers
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Struggling to get answers

Posted: Sun Jan 09, 2022 12:29 pm
by Dave_1974
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.

Re: Struggling to get answers

Posted: Sun Jan 09, 2022 1:36 pm
by bowlingbun
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.

Re: Struggling to get answers

Posted: Sun Jan 09, 2022 2:12 pm
by helena_2006
'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.

Re: Struggling to get answers

Posted: Sun Jan 09, 2022 2:51 pm
by bowlingbun
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.

Re: Struggling to get answers

Posted: Sun Jan 09, 2022 3:00 pm
by Charles_2112
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.

Re: Struggling to get answers

Posted: Sun Jan 09, 2022 6:43 pm
by Pet66
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.

Re: Struggling to get answers

Posted: Mon Jan 10, 2022 10:33 am
by Dave_1974
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.

Re: Struggling to get answers

Posted: Mon Jan 10, 2022 11:54 am
by bowlingbun
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???

Re: Struggling to get answers

Posted: Mon Jan 10, 2022 12:57 pm
by Dave_1974
bowlingbun wrote:
Mon Jan 10, 2022 11:54 am
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???
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.

Re: Struggling to get answers

Posted: Mon Jan 10, 2022 2:04 pm
by Dave_1974
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.