At least they are taking it seriously Sue, I’m just worried about the toll it’s taking on you, and of course it should never have been so badly mismanaged. Strange that all these people forget about the carer, especilly the Carers Assessment, before discharge, but the buck always ends up with the carer! We had continual problems with all four parents for years. My husband died of a massive heart attack soon after his dad died. I’ll always believe it was caused by the stress of caring for all the parents plus our brain damaged son. That’s why I keep saying look after yourself, if possible.
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@bowlingbun….I’m sorry you have had to go through such a tough time over the years. I don’t have it as tough as you do. I’m just relieved that I can finally say how I feel and I can finally see a light at the end of the tunnel. It’s not going to be easy I know to get there but I think these tough times have to happen for us to move forward for a better future.
You are right though, they don’t think about the carer at all. I said to adult social care that a risk assessment hadn’t been done before Phil came home and that it should have been!!!
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Not having a good day. Just had a call from the PICS team. Phil isn’t working with the rehab plan and they’re stopping it. PICS are now applying for care from social services which Phil has to fund himself. A financial assessment will then be done after the care plan is in place and a social worker will then come out.
I’m going to have another talk with Phil tonight as he has to appoint his own solicitor re us buying him out of his share of the bungalow. I’ve got some info from my solicitor now with regard to this and am going to book an appointment to see them as well.
To top it all Phil has called 111 and an ambulance is outside our home at the moment!! The PICS lady said he’s called 111 as he’s been having blank moments!!!
I don’t understand how he could have let it all come to this and is not interested in helping himself at all!!!
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Aww @Sue24 heartaches for you it’s a messy mess…I hope the paramedics are helping Phil
Good on you for getting legal advice. Right now it’s SO important.
I just want to gently offer - without excusing him - that all this is, like I mentioned VERY reminiscent of how everything started before…the difference being YOU are wiser and have already tried everything and done everything there was to do so perhaps this is the only way forward…a big disruption…
I just don’t think Phil can strategise or plan ahead…lack of mobility, weight and health issues are compounding and the heart-arrythmia is worsened by poor circulation …SO whether he is intentionally or unintentionally ‘doing’ this, is kinda not here or there…because we all know the most likely outcome…
If he gets readmitted anywhere - it gives you breathing space, and TBH him having his own solicitor means you abdicate responsibility over to the solicitor…irrespective of ‘mental capacity’ - is that possible? @Sue24 @Charlesh47 Thoughts?
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@Sue24 Cyber hugs. Everything takes so much time though doesn’t it? Is it not possible for the paramedics to take Phil to hospital for his own safety? It really does sound as if is lacking mental capacity potentially and is a danger to himself? It sounds as if he needs 24/7 supervision? Please let us know how it goes. This is such a horrible situation for you. Just do not let Phil prevaricate re a Solicitor.
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Thanks guys. The ambulance guys have gone without taking him in. To be honest I just monitored the situation on my ring doorbell camera from work and didn’t go home.
I’ve spoken to adult social care again just to make them aware of the situation.
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Sue, you did the right thing. If Phil can’t be bothered to look after himself, then why should you?
I am wondering if these “absences” are indicative of something else going on - but have they only started since he was home or have they been going on a long time, but he’s only admitting to them now? Has he ever had a brain scan? Would he even fit in a scanner? (My mum had such a deformed bent back towards the end of her life that she didn’t fit, although only about 11 stone).
He must now take responsibility for his actions, and I’m relieved that he called the ambulance service.
You might have to ask the social worker to arrange “emergency respite”, those tend to be “buzz words”. We are here to give you as much support as possible.
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@Sue24 I agree with BB - well worth saying he needs ‘emergency respite care’ and that the NHS have a ‘duty of care’? I also agree that a brain scan might show what exactly is going on…thinking of you and hope your evening is not too difficult.
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@Sue24, just been catching up. It’s good Phil phone for help, the team trying to help him should understand more. He been away from you and home for 6 months and he might be missing the hospital setting which can happen to people who are very ill. You see them regularly at A&E or in mental health unit they can’t stand being outside they rather be in. Let’s hope something is done.
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@bowlingbun… the paramedics spent two hours with him and couldn’t find anything wrong. He’s had these vacant episodes from time to time over the last 7 months in particular when he was firs in hospital. Think they’re linked to stress. He hasn’t done anything to help himself and has been given every chance. Unfortunately there’s nothing left that I can do now.
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They’ve also done brain scans when he was in the hospital and found nothing wrong
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@Sue24 it does sound as if the absences are non-epileptic seizures related to severe anxiety. It also sounds like he wants to be cared for rather than working hard to gain independence and mobility. Therefore a care setting would be more appropriate. I think @Michael_1910123 has point, he likely has become institutionalised. Being alone and having to structure his own routine at home is something he’s not used to and doesn’t appear able to adapt to or achieve.
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@Melly1….I think you’re absolutely right. He’s had everything done for him for the last 7 months and can’t/won’t manage/try. I think the vacant episodes are the pseudo seizures that he previously had in the hospital. He also told me last week that he’d had a couple in the early weeks of being in the care home.
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Hello Sue - it sounds like you’ve been having a really tough time recently with looking after your husband. After reading one of your earlier posts last week I contacted our helpline advisers and have received the following response. I appreciate that things have moved on since then but I hope this information is helpful.
Wishing you well
Michael
Sue can ask the local authority to review the care package her husband has. In England, a service user can make a request for a review under S27 Care Act 2014.
Stripping the bed is housework but can also be considered under the Care Act 2014, under the eligibility outcome of ‘maintaining personal hygiene’ and ‘maintaining a habitable home environment’.
It is unreasonable for the care workers to allow Sue’s husband to sit or sleep back in a bed which is soiled as this can cause other problems for him and can leave him without proper hygiene.
I suggest the first step is to ask for a review and to state in the interim that the care workers strip the bedding.
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@Michael_CarersUK…thank you for taking the time to contact me and for forwarding this advice into me. The carers have since advised me that they are happy for me to ring their out of hours number if anything happens overnight and they will
Come out. I’m currently in communication with the BCP social work team for the hospital and they are looking into things for me.
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This is all so frustrating!! Phil’s idea of exercising his legs is to get up from his riser recliner chair and stand on the spot and move his feet. Also he thinks that by raising and lowering the leg rest that’s exercising his legs. I’ve said to him until
I’m blue in the face that that’s not enough exercise. The carers have just been in and asked if he’s been walking and he said yes!!! They then asked him if he wanted to get up and walk to the kitchen, he initially said no. Then agreed to try and walked to the kitchen on his frame. He’s made a roll for tea. They then asked him if he wanted to make a cuppa (kettle in front of him and cups) and he said no he couldn’t!! They’ve just encouraged him to make himself a coffee. They’ve now had to explain to him again that he needs to get up and walk every hour!!!
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Hear you @Sue24 Watch out for the arguments and exhaustion after the carer’s gone.
Sending you big hugs
I don’t think he’ll listen to you - only to someone he has to ‘perform’ for, which puts you in a no-win situation…ie a situation that isn’t going to improve for you…all your plans are the best way I think…
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They need to treat him more like a toddler, not asking him if he wants to do something as that gives him No as an option. Instead, to say “Now we need you to make a cup of tea for us. I’m really thirsty today”. Again, not just for himself, but them too, and you of course. I’m sure you would be happy to let them have a tea bag and drop of milk. Maybe also get them to say it would be nice for him to do something for you as you have been doing so much for him?
If he is to stay home he needs to stop solely thinking of himself.
Easier said than done of course!
Would it work giving him specific walking targets, ie to the front door and back?
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Thanks guys, I don’t think he’ll do anything different to what he’s been doing. I’ve reached the conclusion that you can’t help someone who won’t help themselves and it’s his life he’s ruining but I’m not going to let it ruin mine anymore.
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@Sue24 Sending hugs. You have had the patience of a Saint the last few months going the extra mile to get Phil the extra support in rehabilitation. He sounds very similar to my husband. I totally agree and will support you 100% to work towards getting Phil into Sheltered Accomodation/Care Home. You just CANNOT help someone who will not help himself and sadly, I doubt he will change. Stay strong. I agree that you must NOT let compassion change your plans and he must not be allowed to ruin or impact on your life anymore.
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