Lost and confused

[TraceyLG]

Hi, I’m totally new to this so I apologise if this is in wrong ‘area’, inappropriate or incorrect in any way. I also apologise for rambling, I just need help please.
My beautiful 80 year old Mum was diagnosed 12 months ago and thankfully her decline has been extremely slow (or so I think).
She fell 2 weeks ago and was taken into hospital with suspect heart attack. I live in Devon, my mums in Northamptonshire. Obviously I rushed up immediately - gaining several speeding tickets I shouldn’t wonder!
As soon as I mentioned she had dementia they started treating her like a child. She had been in several wards: 3 times they moved her yesterday. The latest one is horrendous. The others on her ward are in the extreme state of dementia. Mums convinced they have moved her there to die. And if they don’t help her soon: she will be right. She had completely given up and wants to be with my dad who passed away 10 years ago.
I’ve tried to get a care plan started before I have to return home but am literally being pushed from pillar to post. I’ve visited several homes and have been told I need to wait for the go ahead from the hospital.
I tried to explain to the consultant, junior doctor and a ward sister that Mum is completely terrified and was begging me to bring her home. I asked them please that they needed to help her.
I was quite literally bullied into a corner with three of them talking at me all at once, and was told in no uncertain terms she was safe where she is, she couldn’t go anywhere as she hadn’t got the mental capacity to make that choice. The consultant even went as far as shaking the doors at me to show they were locked. All I wanted was for them to explain to Mum, gently, that she couldn’t go yet as she was still poorly. Instead, all she could see was her very upset daughter being shouted at by 3 aggressive people. I was even told my attitude and being upset wasn’t helping Mum.
I don’t know where to turn to next. I literally am lost.
Any and all advice gratefully received.
I do have LPA for both financial and healthy etc.
Thank you

 

[Amy in the US]

@TraceyLG, I couldn't just read and run, although I don't know how much help I can be. First of all, welcome to Talking Point. I am so sorry to hear about your mum's diagnosis, hospital stay, and the awful time you have been having.

This is the club no one wants to have to join, I'm afraid. There is a lot of experience and advice here on TP and I do hope you will find it helpful. It's been a lifesaver for me.

Don't worry about where you have posted. There are a number of subforums, which you might like to explore when you have time.

First of all, it is always hard to care for a person with dementia (or PWD for short). It is very hard on a PWD to be in hospital. It's a confusing place and can be very disorienting. Clearly this hospital is not doing a good job communicating with you or helping you.

I would strongly advise you to contact the PALS office at that hospital, first thing in the morning. They should help advocate for you and your mother, and offer assistance. Do not let them fob you off; you may have to be persistent and insistent about what your mother needs.

I am not in the UK and have a limited working knowledge of the system, so will leave it to others (once they are up Tuesday morning) to advise about assessments and so on.

I can say that first of all, you need some clear information about what medical issues landed your mum in hospital and what is being done. If she had a MI (heart attack) you should be able to talk to the cardiologist about that, and so on.

I am unsure if they are talking about a discharge just yet, or if your mum is still not medically fit for discharge.

If she cannot safely be discharged home with a care package (did she have one prior to her recent admission?), then you may be looking at a care home, a rehabilitation facility (if there is an appropriate one in her area), or a care home of some sort.

You can go and look at all the places you like and nobody can stop you! You likely cannot begin the process to move her, without some other process taking place. It would help the experts here if you could clarify if your mum would be self funding or not, if you know, please.

Again, I am sorry, but you will need to wait for some UK posters to discuss those issues with you.

I do want to say, in general terms, that as you clearly live some distance from your mother (I am woefully ignorant of the geography but will look it up), when and if the time comes to consider a permanent care home placement, please consider a care home near you. I know this may sound terrible right this moment, but it is so much easier to visit and to manage care for someone nearby, than at a distance. (I have done this with my own mother and not having to make a long-ish journey every time there is an incident, is a huge relief.)

There may be siblings or other family to consider and consult, of course, but please do consider this as an option.

One bit of practical advice: have any future conversation with staff, nurses, consultants, whomever, out of sight and hearing of your mother. Even if they are not shouting at, or belittling you (if you have the energy I would report their sorry selves!), she may well not understand a lot of that conversation and it may upset her.

When your mum asks to go home, try to stay calm (easier said than done, we know, but she will pick up on your emotions and nonverbal cues). Tell her, as empathetically and kindly as you can manage, that you know she wants to go home. Something like this:

I know you want to go home, mum. Nobody likes being in hospital. I'm sorry you are so upset and I will do everything I can to help you. I don't know just yet when you can leave. For now, the doctors want you to stay here to build up your strength. I am going to get a cup of tea and a biscuit, I'll bring you some too.

If you can find the right words to address her emotions (fear, frustration, anger) and to reassure her that you hear she is upset, you are listening, and you gets, sometimes it can help. Shifting blame (the doctor, always blame it on the doctor, not you) and reassuring you will help (phrases like, I will look into it for you, I will take care of it, I will help) may be helpful. At the end, distract and redirect. Find a phrase or sentence they gets a good response, and then repeat it exactly, word for word, as often as needed. Avoid complicated explanations. Do not try to reason or use logic! Liberal use of please, thank you, and help, may be useful: please, mum, would you help me? The nurse needs your help, to get your blood pressure, please. It would help so much if you could please take this pill.

I hope something in here has been helpful. You are not alone on TP!

Please don't hesitate to keep posting, and do ask questions. Very best wishes to you and your mother, and I hope you can get some sleep. Hospital stays are grueling and you need to look after yourself, too.

 

[Louise7]

Some really good advice from Amy. I've had quite a lot of experience with hospitals - my Mum is there at the moment again - but from experience it's not unusual for someone to move wards a few times. It's common after admission to be placed in AAU which is an assessment ward, then get moved to a general ward depending on the health issues. Some hospitals have what they call 'dementia wards' but as you have found this will cater for people at different stages so can be difficult for those at early stage.

As Amy has said, first thing you need to do is get an update on your mother's health to find out the current position and get an indication on when she is likely to be fit for discharge. From previous experience communication isn't necessarily as good as it should be and it's possible to be told different things by the doctor, ward nurses etc so best to speak to the person in charge of your Mum's treatment, either the consultant or the cardiologist. Be firm, find out when's best to speak to them and speak calmly to establish what the current position is. As above, try to discuss this away from your Mum if you can to avoid any potential distress.

My Mum was getting restless and asking to go home last night so I told her that she needed to stay there until she got a little bit better as we don't want her to have another fall and hurt herself again, plus it is freezing outside so she's safer and warmer where she is. You know your Mum best so try saying something that you think will but her mind at rest. I have found hospitals to be really stressful places when you are trying to do the best for your Mum and it seems like a battle to find someone to talk to who can answer your questions and let you know what's going on, but remaining calm, putting on a smile and being cheerful (when I feel far from it!) makes my Mum calmer and happier. Not the easiest thing to do, but I find that it really helps. Plus I always take in some treats in my bag such as chocolate, snack biscuits, fruit, yoghurt etc and if Mum starts getting upset distracting her with something to eat or drink always seems to work!

With regards to getting a care plan in place prior to discharge, as above the process will depend on whether your Mum will be self-funding or reliant on social services help so post back to let us know and we can advise you from there. Good luck - dealing with hospital stays can often feel like some sort of endurance trial but there's lots of us here who have been through the same thing and you'll get loads of useful advice and help here.

 

[Amethyst59]

Loads of good advice for you already...if it helps, wards in my local hospital (Kent and Canterbury) also have access to a dementia matron. Ask PALS if yours does too. S/he may be able to advise you too with reference to a safe discharge.

 

[TraceyLG]

Some really good advice from Amy. I've had quite a lot of experience with hospitals - my Mum is there at the moment again - but from experience it's not unusual for someone to move wards a few times. It's common after admission to be placed in AAU which is an assessment ward, then get moved to a general ward depending on the health issues. Some hospitals have what they call 'dementia wards' but as you have found this will cater for people at different stages so can be difficult for those at early stage.

As Amy has said, first thing you need to do is get an update on your mother's health to find out the current position and get an indication on when she is likely to be fit for discharge. From previous experience communication isn't necessarily as good as it should be and it's possible to be told different things by the doctor, ward nurses etc so best to speak to the person in charge of your Mum's treatment, either the consultant or the cardiologist. Be firm, find out when's best to speak to them and speak calmly to establish what the current position is. As above, try to discuss this away from your Mum if you can to avoid any potential distress.

My Mum was getting restless and asking to go home last night so I told her that she needed to stay there until she got a little bit better as we don't want her to have another fall and hurt herself again, plus it is freezing outside so she's safer and warmer where she is. You know your Mum best so try saying something that you think will but her mind at rest. I have found hospitals to be really stressful places when you are trying to do the best for your Mum and it seems like a battle to find someone to talk to who can answer your questions and let you know what's going on, but remaining calm, putting on a smile and being cheerful (when I feel far from it!) makes my Mum calmer and happier. Not the easiest thing to do, but I find that it really helps. Plus I always take in some treats in my bag such as chocolate, snack biscuits, fruit, yoghurt etc and if Mum starts getting upset distracting her with something to eat or drink always seems to work!

With regards to getting a care plan in place prior to discharge, as above the process will depend on whether your Mum will be self-funding or reliant on

 

[Frank24]

Lots of good advice! I had a similar experience when my mum went into hospital for a bowel cancer operation and she struggled being in the hospital setting which I believe can be detrimental to someone suffering from these type of issues so seeing your loved one lost and wanting to come home is a terrible wrench. I also live away from my mum and was having to make stressful journeys at great expense so I know how horrible it feels and stressful. I did speak to PALS but eventually my mum was approved for release. Often there is a shortage of social services support and this is what caused a delay in my case. I was telephoning three times a day and communication was really poor and as a relative and LPA over health and welfare you feel terribly powerless. Good luck

 

[TraceyLG]

Hi Frank
I am so sorry for the delay on responding. I lost my log in details! what a dope!
I too am in constant contact with the hospital. I appears to me that the left hand doesn't appear to know what the right hand is doing most of the time.
She is still in the hospital, and I am still waiting for PALS to call me back yet again.
I am checking my phone every 5 minutes to see if someone has called, even though I have got it on the loudest setting known to man.
I am now back in Devon as even Mum said that there was nothing i could do there whilst she is still in hospital but it hasn't made it any easier. To top it off, they lost her dentures over 2 weeks ago. I had to contact a dental surgery who would go to the hospital myself to get a new set made.
A dietitian was even sent to mum to see why she wasn't eating. Errr, because she has no teeth you muppet!
On top of it all, my cousin (who is very close to Mum) was taken into a hospital on the same day as her with a heart attack and two bleeds on the brain and is currently in a critical condition. there is no way I can pass this on to my mum: it would finish her off.
I have decided I want to stop the world because I want to get off

 

[TraceyLG]

Thank you so much for your response, it was very much appreciated. I did reply but I was so tired and was in such a tizzy, I sent your message to me back to you. Doh!