Morning everyone, I hope you’re well this morning and as rested as can be.
I’m feeling like an imposter really as don’t give hands on care although that will come soon I guess.
I’m looking after my mum and dad, both late 80’s in their own home. Dad has likely got dementia although he refuses to go to the GP, some days better than others. He has always sorted finances out so I am slowly taking that over to help them, mum is set in her ways and doesn’t understand or want to try to sort things out which can be frustrating. Dad had a fall a week ago and needed to go to hospital for scans as they queried a fractured neck, thankfully not but such an upsetting experience. On top of this, and probably the more stressful is issues with my eldest brother who is in a care home. He has a brain injury from childhood and is 64 now. He had been in a care home for 11 years but sadly his behaviour became very challenging and he injured another resident and was asked to leave. It took weeks to find another home who would accept him, the one he is in now is lovely with great staff. I have tried hard to find out why his behaviour has changed and to some degree it was the poor care in the last home. However he is being aggressive with the staff when they are helping him get ready in a morning. It’s so upsetting to hear he’s lashing out and did hit one in the mouth last week 
. Mum and dad struggle to understand so I am trying to help all 3 along with working full time in a new job after leaving the NHS after 27 years. My husband has just lost his job too and son has been diagnosed with Crohn’s disease which he’s not really dealing with. I’m the youngest of 4 children, 1 lives some distance away and doesn’t visit parents or brother in the home, my sister lives 3 doors away from my parents but is little help to them and doesn’t visit brother either. I feel overwhelmed with it all but am the only person who can support them. I’m worried the new fabulous care home will want to move my brother on and l just want to find a solution to his behaviour but as he has some capacity it seems like lots of support options aren’t available. I’m sorry for the long post, and not sure anyone can help really
Hi @Chrissy2k2 and welcome. Phew! Just reading what you’re dealing with made me feel exhausted! That’s a real handful…no wonder you’re feeling overwhelmed.
First, let’s talk about you. You desperately need a break, and to do that you need to offload some of what you’re doing. Ask for a social worker to do an assessment on your Dad while he’s in hospital. The chances are that after a fall he’s going to need extra support, if only for a while. That should help take some pressure off as the extra support can also identify other issues. Whether or not he wants to acknowledge them.
Sticking with your Dad, you’re also within your rights to inform your Dad’s GP of your concerns about your Dad’s memory issues. The GP can take note of what you say and may be able to organise an older person’s “MOT” to give him a once over…
Your brother may be very unsettled by his recent move, or it’s possible there’s something he doesn’t like about how workers handle him to provide care. Worth asking them to look for a pattern - same worker, approaching from the same side, or from behind where he can’t see them…it depends on how his brain injury affects him, but I remember supporting a carer whose loved one had a serious brain injury, and he got violent with people who approached him from behind on the left side, because that was the side he was deaf and blind in. So when his arm got grabbed, he felt threatened. Workers then learnt to approach from the front and right and to tell him what they were going to do. Little things can make big changes. You know the little things like that within the family, but they’re often the things that care homes can miss.
Anyway, once again, welcome! Do have a look round, especially at Roll Call and some of the other areas: lots to see!
Thanks for your welcoming reply Charles, really appreciate it.
In my haste to offload I should have said that Dad was discharged the same day bruised and sore but without major injury thankfully.
There has been a catalogue of errors in brothers former home, I think care was done ‘to’ him rather than for him. He’s paralysed down one side and epileptic, I was sure that there was some physical issue that was making him behave that way so have sought help from his epilepsy nurses, still waiting for the assessment and a cognitive one by the frailty team. His behaviour is challenging around personal care, the staff are great but I’m so worried that he’ll be moved on again, if somewhere will have him. I’m so upset that he’s been so disruptive to staff that are trying their best.
Thanks again Charles, I’ll definitely look at the other threads. Have a lovely Saturday
Hi, welcome to CUK. I don’t have much in the way of additional advice as Charles has already given an excellent reply, but just wanted to say hello and to reassure you that you do belong here and are most definitely a carer! No wonder you feel overwhelmed with everything you’ve got going on.
I know you’ve said your siblings don’t offer any help or support but there are four of you, is there any way you can gently encourage the others to step up a little? Maybe they don’t realise what a lot you’ve taken on and think you are managing okay with it all. Sometimes people will let us get on with it until we shout out loudly that no, we can’t manage everything.
Are there any friends or other family whom you can get some support from?
It may be blindingly obvious, but unless you look after you, you can’t look after anybody else. It would definitely be worth approaching your local authority for a Carers Assessment, to take your needs into account.
Kind regards, EEG
Hi eastendgirl, and thank you so much for taking the time to reply, appreciate it so much when everyone’s so busy.
I am the youngest at 53, my eldest brother is the one in the care home. My sister helps to some degree but doesn’t handle stress well so it becomes even more stressful than needs be. I’m more laid back (like my Dad), so it’s less stressful for all concerned to ask me. Both her and my other brother have taken advantage of my parents and eldest sibling in terms of lending money and their good nature, so it’s not really an option to ask them to help sadly. My husband and children are a great support and I maybe need to not worry quite so much, but it’s hard isn’t it. Thanks so much again, I’m very grateful
@Chrissy2k2 you’re very welcome. What you’ve said about your brother could mean that:
- He doesn’t like being pulled about
- It hurts - because he can’t move it doesn’t mean there’s no feeling, and he may even be oversensitive. Does he try to take clothes off at all? That could be a sign of oversensitivity or overheating, which can induce oversensitivity.
- The way he’s approached can make a difference. As you say, “done to” - likely to be an unpopular one!
- Or he may just resent being cared for. Does he have a thing about men/women doing the caring? I remember one man who had a brain injury as a young man rejected all care by male workers. He’d always been one for the ladies and we realised he must have felt threatened by men offering care.
Again, these are just thoughts and ideas: things that might be worth considering if only to discard - you may find there’s a trigger that is causing this behaviour that can be avoided.
Thanks Charles. The one factor that seems to trigger him unfortunately is black staff. He has never been like this however the agency staff at the previous home were all black and there were several episodes when he was injured. The staff in the new home are nearly all permanent staff and very good, but the issues are continuing when they get him up particularly, I am reassured by their care so I feel it’s either a physical issue, dementia maybe or a habit he’s formed. It’s so upsetting to hear how he’s behaving
My son was brain damaged at birth, some parts of his brain work perfectly, others don’t.
Who 9other than you) is actually talking to him about his behaviour?
Would he benefit from some counselling?
My son lives in a privately rented flat, alone, with carer support.
Some carers are brilliant, others not so.
Apparently my son has just said to his (and my) favourite carer that he doesn’t want one of them caring for him any more. Eldest son and I can quite understand why. Another is equally useless, apparently I’m not alone in disliking him.
If my son prefers female carers who can cook proper meals for him, I’m not in the least surprised. I’ve always said what he needs is a “Mum substitute”!
However, we also need to find a “Dad substitute”, ideally a retired engineer or similar who would love helping with steam engines and going to rallies.
The Care Act makes it clear that people have a RIGHT to choose who cares for them, but this is often overlooked.
Where I live, social workers (I don’t like the term care manager when they don’t care at all!) just want to appoint an organisation to give care for 52 weeks and then close the case. This really isn’t good enough, something I seem to be having an endless battle with them over!
Thanks Bowlingbun. You’re absolutely right, everyone should have the right to choose who cares for them, it’s such a personal thing isn’t it. I asked for a mental heath assessment, the initial appointment would only be provided by telephone, despite telling them that he won’t often talk to you unless he chooses, depends how he feels. He’s difficult to hold a full conversation with at times so asking him to explain why he does something is often ignored or you get short shrift, so it’s not an easy task. I wonder sometimes if it’s an attention thing, he gets lots of attention when he behaves badly but I honestly do not know, just clutching at straws. He’d been asked when he first moved to this home if he’d take part in anger management sessions and he said yes but not sure what’s happened. His 6 week review is on Thursday so I will find out more but I’m dreading it to be honest
Chrissy.Welcome to the forum
I can see you have been given lots of good advice.
May I just add, …when my late husband was in a nursing home because of strokes vascular dementia and other issues, it took me quite a while to convince staff to knock his room door before entering, then to explain everything they were going to do.ie R… I am just going to take your blood pressure, now going to help you with this etc etc. He obviously was defensive if they bounced in and started ’ messing ’ with him without explaining. He was usually much more accepting if they explained and treated him respectfully. I have has a note put on the door stating to knock before entering. I and my family even did. I would say hello love it’s only me, I didn’t want to make you jump. Whether my post is helping you I’m not sure, but staff really need to learn about your brothers ways . Better for all concerned
In Hampshire there is a “Challenging Behaviour Team”. Their leader gave a talk to a group I belonged to. In the vast majority of cases, observing people and doing things differently resolved issues fairly quickly. I know it’s a difficult subject, but maybe a covert camera would reveal what is happening when you are not there. Maybe talk to CQC about this, and your rights?
Thanks Pet, really appreciate you taking the time to reply, life is so busy isn’t it.
Thats great advice, thank you and certainly something worth trying. He was at home with mum and dad up to 11 years ago, so late 70’s for mum and dad. He seemed to be ok in the initial home after a period of unrest, then lots of longstanding staff moved on and it seemed to change. It’s so difficult to pinpoint a constant trigger though so will definitely suggest your ideas to the staff. He hates getting up in a morning and did whilst at home, his drugs make him sleep lots anyway so often he’ll refuse to get up until nearly lunchtime. Mum and dad are set in their ways so insist on going in the morning so staff try to encourage him to get up and so the cycle begins, but even if he’s left to get up when he chooses it still seems to happen. I feel like I’ve defended him for a long time but not sure if I can anymore and that feels incredibly mean, but it is very frustrating
Thanks bowlingbun. My new job is actually with the CQC so it’s great to see you suggesting them. I’ve had lots of great support from my new team but as you can imagine it’s still difficult. I have no concerns at present with staff in the new home, it’s more from my brother, such a difficult one. I do feel as if he may have learnt this behaviour now, if he’s challenged by some staff about his outbursts he’ll apologise , and seems to acknowledge his behaviour is wrong but he won’t always interact when you strike up a conversation, be it about this issue or in general.
I should say I tried to gain support from the local challenging behaviour team and they refused as it’s only for those with learning disabilities. He does seem to fall into a chasm between criteria
The team I mentioned was also for those with learning disabilities. For years they refused to help my son as I used the word difficulties not disabilities. I thought that word was outdated, not in Hampshire! All our children are unique yet they are expected to fit neatly into an administrative pigeon hole. I understand that the role of CQC is changing, keep us posted.
Is there a specialist Brain Injuries Team in your area? We certainly used to have one here. That can help to cut through some of the problems as they’ll have come across this sort of issue before.
Morning Charles, thank you. Would that be with the local authority? I did arrange an appointment for him with his neurologist who is very good but unfortunately my brother slept all the way through it so he was unable to assess him. He had arranged for the community epilepsy nurses to see him but I’m not sure if that’s happened yet.
Yes same here! Because he has a difficulty from his brain injury and not a disability they won’t help which is so frustrating. The positive behaviour support team is the same.
Brain Injuries Teams are NHS services usually attached to Neurology Departments: if he’s under a neurologist I’d have expected him to be supported by the Brain Injuries Team - if there is one. Ours was cut back immensely a few years ago, but it’s got to be worth asking about it via the neurologist.
Chrissy,
I juggle work and caring. Quite a few of our patients are in care/nursing homes. They nearly all struggle when there are agency staff as they don’t know or understand the residents like the regular staff do. If the agency staff at the old home were mainly black and he got injured, it’s understandable that he reacts when the care is delivered by another black carer. He probably is over generalising, tenses in anticipation and that won’t help.
Is the manager aware of this? Trauma from previous care is a valid reason to request certain carers are avoided. It may be possible to jiggle the rota to avoid black carers delivering his personal care particularly in the morning and they can help with other aspects of his care until he gets to know them and trust them.
The meds and morning issue are tricky. Could he have the meds earlier the night before so they are wearing off earlier so he feels less drowsy? Or could he get up, washed and dressed after your parents have visited? Ideally they’d visit later but sounds like they’re unlikely to want to do that.