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Confused elderly Mum - hospital discharge in N. Ireland

(24 Posts)
roundandroundthehouses Wed 10-Jun-15 11:34:18

Obviously we'll be speaking to the hospital, but I wondered if anyone had experience and knew what we might expect. Sorry this is long. I've specified we're in N.I. as healthcare and social care are integrated here, but tbh I'm on a very steep learning curve!

Mum (86) was rushed to hospital last week following a seizure. They initially thought it would be fatal, but she has made astonishing progress and is now on a rehab ward. She is physically weak but has no paralysis (it wasn't a stroke as we had feared), and may get more of her strength back. More concerningly, she has periods of confusion/obstreporousness (shouting, fighting to get out of bed, pulling at wires). A brain scan showed some damage, probably due to hypoxia, and there may be long term cognitive issues.

Mum already did have some cognitive issues. She was vulnerable/childish, and whilst not diagnosed that we know of, we believe that a serious accident in her 20s caused some brain damage. She's been like it for as long as we can remember, but it has worsened with age. She had been coping in her own home, but not independently. She had lots of support from myself and my sister, who live nearby. Practical stuff like cooking, cleaning, driving, etc. as she could do none of that for herself. She has never been able to handle finances, forms, etc., so we've always done that since Dad died, although we don't have POA. She has very few assets and lives in a privately rented bungalow receiving Housing Benefit. TBH I worried that we were masking her existing difficulties, and before this crisis I'd been trying to persuade dsis that she needed some sort of capacity assessment. This will obviously now be needed following the seizure.

She is definitely worse than she was before, and I really don't foresee that after discharge she'll be able to be alone, especially overnight. We are under pressure from extended family to take her in (neither of us has space), or take turns to stay with her in her own house, as they do with their own mother. But there are eight of them and only two of us. We've both been happy to support her on the level that we'd been doing, but neither of us has the scope to help her full-time due to existing issues with work/health/family.

The answer might be some kind of residential or very sheltered care. But part of Mum's previous issues involved being constantly unsettled in the place where she lived, always wanting to move house. Since Dad died 13 years ago she's moved 6 times, no sooner arrived in a new place than finding fault and looking for the next one. We've been constantly driving her to view flats and houses (often 2 or 3 a week), which she mostly turns down for reasons like an unemptied wheelie bin left from the previous tenant. We can't just refuse to do this as she then makes her own way, hands over deposits, signs up for unsuitable houses - her current one is a badly maintained bungalow with a massive garden, which is on the market - and announces that she's moving on Monday. This has happened more than once, and Dsis and I have to drop everything and organise the move, cleaning, paperwork, etc. Mum meanwhile packs her cuddly toys into a bag and sets them out in the new place.

So we were already in a situation that wasn't tenable for anyone involved. It's actually only with the change of her being in hospital that we can step back and realise just how bad things had got.

Mum will definitely not want any residential care, and is likely to be unsettled and disruptive in any setting, constantly wanting to get out. She is also liable to tell anyone who asks that she is fine, and that her daughters will look after her. She has no understanding of the effect this has already been having on us, even before the new brain damage. We love her so much. We want her to be safe and happy, but truly can't give up any more of our own lives. We're worn out already with the way she was before.

Does anyone have advice on the most likely/best outcome for everyone involved?

TheEponymousGrub Wed 10-Jun-15 22:09:50

Sorry Houses, I have no advice for you but i just wanted to say how I admire what you (and your sister) have done already. (I hope that's okay.)

roundandroundthehouses Wed 10-Jun-15 22:28:15

Eponymous - excellent name grin - you are very kind. Thank you!

roundandroundthehouses Sat 13-Jun-15 10:20:48

Just an update (although it looks like there might not be experience here). She has continued to improve, and was assessed by a doctor as medically fit for discharge. This was on Friday, and by their 72-hour discharge protocol this means she would leave hospital on Monday.

She still has a catheter and seems to have some bowel incontinence. Can walk a couple of steps supported on either side. I couldn't get hold of anyone yesterday to ask about what happens next, and now it's the weekend, so the only day we might get somewhere is also her likely day of discharge.

Most worryingly the doctor I spoke to (who doesn't actually work with her) thinks she has been assessed as having full mental capacity. She is now mostly lucid but, for example, told me yesterday that she was divorced from her husband, when Dad died 13 years ago. I told the doctor this and she said she'll add a note that "daughter sometimes finds her confused".

Mum is very pleased that the doctor "told me I can leave whenever I like". I tried to ask what she thinks she'll do after that and she said "I'll think about that when I'm walking out the door!"

I'm concerned that she isn't in fact anywhere near competent to make her own decisions. What will happen if they try to set up a care at home package and she refuses despite being immobile and incontinent?

Sorry for all the questions but this is all new and worrying to us.

whataboutbob Sat 13-Jun-15 10:21:33

Hello round- like eponymous just wanted to add some words of support. The situation seems complex because there really isn't a diagnosis, it sounds like your mum has a bit of a child like approach to life, was probably propped up a lot by your Dad and now has transferred the role to her daughters. I had an aunt who was much like that, she also had 2 daughters, one was basically a "life carer" till the end (she lived with her till she died in her 60s) the other detached because she couldn t cope any more. Anyway, you and your sister are obviously very caring, all I can say is listen to your own needs too, don't take too much on (easier said than done I know) and where necessary do involve professionals. Sure she won't like that, but not very strong people can also be very powerful in mobilising and exhausting the people around them.

roundandroundthehouses Sat 13-Jun-15 10:27:17

Thanks, Bob. Our trouble is that we were already at our limits. My sister (61) has rheumatoid arthritis. I'm 45 and healthy but still have children at home. One is hard work and currently going through ASD diagnosis, and both have MH/SH issues. Plus work for financial reasons. Neither of us can take on any more sad

roundandroundthehouses Sat 13-Jun-15 10:32:01

You are, btw, absolutely right to say that she is childlike, and that my Dad had propped her up before his death. She has only ever lived "independently" in the most nominal of ways. I didn't grow up with my sisters (I have a third but she lives away), but we had rather eccentric childhoods to say the least!

Annarose2014 Sat 13-Jun-15 10:34:12

Hi, not in NI, but phone today & ask the nurse in charge of your mum to look at her notes and see if they've done a "mini mental". This is an MMSE or mini mental state examination.

If she says they haven't then state that due to your concerns about her lucidity and capacity you insist one be done before any decision on discharge.

roundandroundthehouses Sat 13-Jun-15 10:35:44

Anna, thank you very much. I do think that getting them to understand her mental state is the key.

Annarose2014 Sat 13-Jun-15 10:39:17

You can also request via the nurse that the doctor put in a referral to the hospital in- house social worker team. They are sometimes indeed the ones who do the MMSE. Regardless, you need them cos they are the gateway to community services like home helps.

Annarose2014 Sat 13-Jun-15 10:42:02

They can advise you on what she may be entitled to on discharge, and how to get it. The doctors can't do anything other than write a prescription for her to take home.

cremolafoam Sat 13-Jun-15 10:44:05

Hi houses, I'm so sorry you are going through this.
I have a good friend who has been through this with her mum. She suggests phoning AgeNI on Monday to get advice about what is available. I know it took my friend ages to get sorted- she paid for live in help for a while at great expense, for similar reasons to yourself , until she got her dm a place in Clifton House.
It's absolutely shit that there seems to be absolutely no provision in NI in this situation.
Best of luck AgeNI

whataboutbob Sat 13-Jun-15 10:45:49

Just seen your update- cross posts! Re capacity, i work in a hospital as a dietitian and it does seem to me that they set the bar pretty low for capacity. It seems cynical, but I suspect it often makes it easier for doctors to assess someone as having capacity, especially if they want to go ahead and discharge them. I suggest you make your concerns very clear to the nurse in charge + her doctors. Here in England there are often discharge nurses on a ward, ask if they have one as it is their role to co ordinate complex discharges and ensure safety after discharge. If not, the hospital will still have a legal obligation to ensure (as much as possible) that your mother's discharge is safe. She could be suffering from delirium, a transient dementia like state usually brought about by infection. But even if she isn t, it doesn't sound like she is ready to go home. It might also be a good idea to ask for a referral to social services. Once she is home it will be harder to get these services in place so make a noise now. Your Mum may well hate the idea of SS services being involved, but just go ahead because you need all the help you can get and it probably is not going to get any easier. Also, if you can get POA, go for it even though she may not have many assets (you may also be surprised to discover she has more than you think) it will still make life a lot easier for you and will force various agencies to talk to you a lot more readily than if you didn't. Finance is the more important one, but if you can get Health and Welfare too it is also useful.

Northernlurker Sat 13-Jun-15 10:46:56

Not in N Ireland so don't know how that works but I agree you've got to try and get somebody to take notice of her mental state and lack of competence. Is your mum well known to her GP? Might they be able to help? It is difficult for hospital staff sometimes to know a person's true baseline because people mask so well but GP or district nurse who has seen them previously could offer some insight.

roundandroundthehouses Sat 13-Jun-15 10:46:58

Thanks, Anna. It does seem as if the doctor who pronounced her "fit" only deals with the medical side being stabilised, and the social/care aspect is a different department. There's definitely an in-house SW as I heard her introducing herself to another patient in one of the wards Mum's been in. The doctor I spoke to yesterday mentioned her but said she wasn't around over the weekend. She also mentioned what she called "step-down" care, which seems to be a temporary residential home placement for people who need further assessment or re-enablement. This sounds ideal for Mum, but the question is whether she'll agree to it. I suspect that when/if a SW sat down with her and attempted to discuss plans for the the future, she would soon realise that Mum isn't really capable of thinking in that way. Especially if she starts talking about "walking out the door" sad

Bless her - we just want her to be safe and happy. The trouble is that with Mum, "safe" and "happy" may be opposite things. And last week we thought we'd lost her.

roundandroundthehouses Sat 13-Jun-15 10:50:56

Very grateful for all advice. We do know about her assets as she's never been able to deal with her own business, and Dad just passed it over to me. She doesn't have much at all.

The GP is a great idea, although again we'd have to wait until Monday. She's a familiar figure in the surgery (tends to sit down on the waiting room floor), and also with the local constabulary (!) (wobby cycling along the pavement until her knees got bad a couple of years ago.

In the midst of this I now have to go and drive dd2 somewhere, but will pass on all advice to dsis, who will be with her this afternoon. I'll be in tonight so will see who I can speak to there as well. Thanks to all so far thanks

roundandroundthehouses Sat 13-Jun-15 10:51:41

* by "own business" I just mean "admin", btw!

whataboutbob Sat 13-Jun-15 10:52:24

Remember you are in a more powerful position while she is in hospital, because they will want her bed back and you can apply pressure for various assessments to be made (MMSE/ capacity/ physio/ OT/ DN/ SS etc) a lot more easily than after she is discharged. Also make it quite clear what your and your sister's situations are. Health care professionals somehow imagine that children/ spouses etc have nothing else to do in life but tend to the patient's needs. Make it very clear that is not the case. It'll be difficult at first because you have taken on the role for so long, but please be firm with the professionals and also your mother.

Worriedaboutwee Sat 13-Jun-15 10:59:17

What an awful situation. I have been through something very similar with my mum who is disabled and has dementia. Eventually she moved into a home permanently but the years leading up to that we're hell.

I'm not sure how it works in NI but are there any places who might be able to offer emergency respite? We once had to arrange this on Boxing Day and did manage to get it sorted very quickly. We just rang around care homes until we found something but she is self funding so it was easier, no social services involvement etc.

Another option we have done is getting a 24 hour carer in for a few days until we got something more suitable sorted. There's loads of home care companies here luckily and we got one fairly easily. They stayed overnight and gave us peace of mind until we sorted the care home out.

Both options cost a fortune and I don't know how paying for care works with you there but just wanted to share my experience.

You are doing an amazing job. There is no where near enough help for carers. From personal experience please don't do anymore than you can, we did And ended up resenting mum even though it wasn't her fault. It was an awful time and you have my full sympathies.

Definitely get onto the hospital over the weekend. Tell them you won't be accepting her on discharge due to her mental capacity and force them to help you. I really hope you manage to get something sorted.

roundandroundthehouses Tue 16-Jun-15 09:47:04

Just an update. I gathered information from all suggested places, including checking with Age NI and the hospital trust's own policies, and had a better idea of what grounds we might make for insisting that she needed a thorough care assessment before. One point we were going to make was that, apparently, "capacity" can be assessed very specifically. So a person might, for example, have capacity to make decisions about their day to day life, but lack capacity to act in their own best interests for more complex decisions about future care (or finances, etc.). We could also have asked for a carer's assessment on our own behalf.

However, we now have a little more time as unfortunately my mother has taken a turn for the worse - not medically, but regarding the confusion. Her catheter was removed and she is basically continent, but still needs lots of support to get to and from the toilet. However, she isn't co-operating with/aware of this, and has been constantly trying to climb out of bed. As she can't walk she had a minor fall last night (not hurt as she was in a low profile bed with cushioning underneath). She is also periodically distressed and angry, shouting and throwing food. As she is now deemed a "complex" discharge she wasn't released from hospital within their usual 72 hours. The hospital has a multidisciplinary discharge meeting every Tuesday, so for today's meeting they now have lots of new information about my mother's capabilities.

It is very, very hard to see sad . But dsis and I have agreed that if a worsening of confusion had to happen, at least it happened whilst she is still in hospital. There is currently no way that she could manage at home without 24 hour supervision, and even then the distance to the toilet from any room is further than she can walk, even supported. The last nurse I spoke to seemed to think the most likely solution would be a few weeks of residential care, during which her needs and capabilties would be assessed with a view to the future. It's all going to involve the interplay between mobility, the toilet and her varying levels of confusion.

Meanwhile, her private landlord got in contact yesterday asking permission to show viewers round Mum's rented house today. (I haven't told him yet that she's in hospital.)

Thanks again to all - hopefully we will know more soon.

roundandroundthehouses Tue 24-Nov-15 09:14:06

It occurred to me that, after all the help I got, I didn't ever update with the outcome of all this.

The integrated health and social care actually worked together pretty well in the end, in Mum's case. She was assessed as being medically fit for discharge, but in need of step-down care and more assessment, so was admitted for a further month to a step-down bed in a smaller hospital, where she received physio and assessment to see how she'd cope. SWs decided that she definitely would not cope on her own. As we had been 'covering for her' for 10+ years, even before the seizure, this was unsurprising news to us! She also was given an official diagnosis of 'hypoxic brain injury' following CT scans, but they did say that some of this may well be old injuries. At this point dsis and I very much understated the amount of care that we could/had previously been providing, having listened to all advice to get care in place at hospital discharge time.

We have found her a place at an extra care sheltered unit, which is ideal as it balances freedom to be taken out and about with housekeeping and a night warden. She has morning carers for washing and dressing. We had a very, very rocky time with her settling into this, where her confusion worsened and we worried that in fact she wasn't even capable of this environment. However she is now settling in. She is in fact only a little more confused than before, which given her 'new' diagnosis makes dsis and I feel somewhat vindicated as to what we'd been through with her in the preceding years.

Physically she is now much more frail, can only walk short distances and when outside needs to be led by the hand. This has made dsis and I very glad that we understated how much we could do for her, because this means that we were able to get the basics of care and housekeeping in place for her. It means that despite our other commitments we aren't so bogged down in basics, so have time to do the 'quality-of-life' things like taking her out, etc. We both see her every day, and she also regularly visits her 'gentleman friend'. It helps a lot that everyone lives so close by.

Mum is NOT happy with this setup - dislikes the restrictions, constantly finds fault with the place where she is. Unfortunately we know from long experience that she would be like this wherever she was. All we can do is keep her as entertained as possible.

So for now - we know very well how suddenly things can change - we are in something of a routine that works as well as it can. I hadn't ever heard of extra care sheltered housing before, but we're very glad of it now. Thank you for all advice.

whataboutbob Fri 27-Nov-15 13:51:56

Thanks for checking back in Round. It sounds like you and your sister have come a long way since the highly stressful early days. I'm glad you've been able to carve out some boundaries and make it clear to all you could continue being her carer. Not surprised to hear she has complaints about it all. In my experience sadly the less capacity someone has, the more they think they are fine and hang on to an illusion of "independence", while all around them are running themselves ragged propping them up. So once again well done!

roundandroundthehouses Fri 27-Nov-15 19:05:53

Thanks, bob flowers

smurfy2015 Mon 28-Dec-15 17:48:10

Glad to hear things have sorta worked themselves out. It is a hard fight for care (im also in NI). I was in hospital from end of august to mid september and was sent to a step down bed in a nursing home as have physical and mental health needs, im expected to return home within the 1st week or 2 of new year, have experience of being the person moved about, however im not confused and i only left my 30s behind this year, if can help, send a message

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