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Out of ideas. Dad ill, infirm, vulnerable and alone.

(27 Posts)
FJL203 Thu 16-May-13 18:20:23

I don't know that anyone can advise on this and I don't even know what I'm asking for advice on. I can't see the wood for the trees atm.

The situation is this:

My Dad -

Is 72.
He can barely shuffle on a zimmer frame - it takes him half an hour to cross his studio flat to get to the bathroom.
Is very intelligent and articulate but with some mild short term memory loss.
Has a past history of 2 heart attacks, mild strokes, pneumonia.
Came out of hospital last week following a chest infection.
Has emphysema.
Weighs only seven stone.
Has very poor eyesight now and, due to an accident last year, has writing skills "like a child".
Has just been diagnosed with a shadow on the lung.
Is petrified beyond words and is awaiting an MRI scan and a PET CT scan.
His breathing is poor and his conversations are punctuated by coughing fits.
Has a blood pressure problem which causes him to keel over sometimes. The docs have identified the problem but not the cause or the cure.

He's living in warden controlled accommodation on the 1st floor. He is unable to get out of the flat.
He's fallen more than once - his carer, who comes in for half an hour three times a day for very basic tasks is not allowed to help him up, (nor is she allowed to do his shopping).

I'm a considerable distance away and for more than one (genuine) reasons re my own children and personal situation am unable to drop everything immediately and go to him. Even if I could that won't resolve the problem, which is that his accommodation is not suited to him and is putting his physical and mental health at risk. He could come here but would be no better off in a house with an upstairs bathroom etc. Moving my family to where he is is an option but will take a considerable amount of time to achieve.

Dad can't cope. This once so strong man phoned me at 7am sobbing that he hasn't slept, he's too scared to in case he needs the bathroom ( hmm I know, I know, he might need it whether he sleeps then wakes or whether he remains awake), he's so frustrated with being on his own 24/7 apart from the drop ins from the young woman carer, he's in a state.

Yesterday, with his permission I made calls to his GP surgery and social services and it was planned for him to be collected this lunchtime and taken to a residential care home for respite and rehabilitation, with nursing and social care on site, company and an open-ended stay. The idea was that at the conclusion of that stay he would be moved to suitable long-term residential care.

He waited anxiously for it, hanging on to that hope, but the transport didn't arrive. At about 2.30pm he was told that there had been a mix up, he was only going to be assessed today for possible entry into residential rehabilitation and that there were no beds there anyway for a few weeks.

When the assessor came out she concluded that as Dad's BMI was so low and there was so little muscle to him any physio would be harmful and so they wouldn't have him at that particular home anyway.

I've been back on to social services, who've tried to find residential care today but the 2 places they tried say Dad is too high need for them. The community mental health officer for older people has visited him and is pushing SS to find him somewhere but says there are only a limited amount of places which could take Dad.

At present they've arranged for his carer to come in for an extra visit this evening but that's all they can do.

He just needs to get out of where he is. He's vulnerable and afraid, at risk of falling and can't get out of bed a lot of the time and is totally unable to leave the flat. He's literally been banging his head on the walls.

SS are going to try another care home tomorrow to see if they can take Dad for respite. But if they can't? This is worse than last night, at least last night he thought there was light at the end of the tunnel and somewhere to go.

I suppose I'm asking - has anyone had any experience of this kind of battle? Is there anything else I can be doing or asking SS/GP/anyone else to do?

I don't even know the system, I don't know who controls who, what agencies should be involved or could be involved so I don't know whose door to go knocking on.

tigerlilygrr Thu 16-May-13 19:34:26

Where does he live OP? I think provision is regional so would be good if you can specify. I really really feel for you both. My much loved dad passed away last year from COPD (not emphysema but similar). He also needed increasing levels of support although in his case my mum was his main carer and he had two visits a day. I'm sorry I can't give you more specific help right now; I do hope someone else can (if you don't get advice soon perhaps try reporting in chat for more traffic).

FJL203 Thu 16-May-13 19:39:04

Thanks tigerlilygrr. I'm very sorry for your loss. flowers

He's in Kent - you see, I didn't even know that provision would vary according to region, that's how clueless I am here.

mudsweatandtears Thu 16-May-13 19:54:02

I have worked with the elderly in their own homes for many years and in situations like these have installed assistive technology to help keep that person safe until residential care is found. He would probably benefit from a pendant alarm, fall detector and bed sensor. At least then if he does fall, feel unwell or is unable to get out of bed the alarm would be automatically raised and help would arrive (carers or paramedics). It's not ideal and obviously he needs moving as soon as possible, the only advice I can give there is to ring everyone you can, social workers, gp, age uk. You need to make a nuisance of yourself on your dads behalf and fight his corner for him, unfortunately being polite doesn't get you anywhere! There's no reason why respite care couldn't be found out of the area unless he's specifically asked to stay in one area. Are there any extra care units in that area? That's like sheltered housing but with 24 hour carers on site?

tigerlilygrr Thu 16-May-13 19:58:33

I don't think many people do OP. it's the kind of knowledge most people only need to know once. I know because my dad lived on the border if two counties, one of which was far better than the other. Unfortunately he lived on the wrong side but my mum was able to pull a few strings. My mum is on hols now but when she gets back I'll ask if she has advice and get back to you.

FJL203 Thu 16-May-13 20:04:15

He's got the pendant alarm but a fall detector and bed sensor would help greatly, thanks for the idea. He keeps saying "they don't like you using the alarm" and, unless in the case of a fall or serious and sudden illness as he also says, there's not much they can do to be fair to them.

I'm in that difficult position of having to be ultra polite so that I don't worry dad or alienate the people he needs to help him while I'm longing to say, "This just isn't bloody good enough, what are you going to do NOW!!!".

I wasn't aware that respite care could be found elsewhere - they're currently looking at quite a distance away but still within his county, do you mean that SS could identify somewhere near me, in another county, for example?

I don't know about extra care units either - I'll do some asking and make some calls in the morning.

Thank you ever so much muds.

FJL203 Thu 16-May-13 20:04:50

Thank you too, tigerlily.

ginmakesitallok Thu 16-May-13 20:07:45

I wonder if there are any voluntary agencies which could help out? If you have a local carers center they should know?

2tired2bewitty Fri 17-May-13 10:26:30

As a short term solution to one of the problems could you get him a comode? SS should be able to provide one but i know MIL found that just buying one herself was much more straightforward in a similar situation.

FJL203 Fri 17-May-13 11:33:47

Yes, but whether Dad can get out of bed without assistance to use it is another matter, 2tired. It won't be an immediate solution either, but will take time to be delivered.

The more pressing matters are his mental state and the likelihood of him falling again. SS are due to call me back later following my call to them this morning. They hadn't heard from the other home they'd approached when I called nor had they chased it up so it was a good thing I did ring as they're chasing it up now.

Theas18 Fri 17-May-13 12:34:14

Locally we have " rapid response" which the GP can use to access help urgently. There may be similar for your dad?

StrokeOfBadLuck Fri 17-May-13 15:57:45

Don't have time to read the whole thread, but just wanted to mention that I found social services absolutely and entirely hopeless.

The best info I got was from two separate people who showed me round two different large residential care homes. They've seen it all before, and were able to explain everything - not just to do with their own care homes. Also, as the homes were so large, they had personal incentive to get a new resident, so were quite objective. One wrote everything down for me, which was a great help. The other gave me photocopies of useful information. They also had personal experience with their relatives, which helped.

I had been round the houses trying to find out information from so many different people - guess it all depends on your area, but the local voluntary groups were also hopeless.

I moved my mum near me, to allow me just to drop in each day. It really is so stressful.

FJL203 Fri 17-May-13 18:00:14

Hi again. I'm back from work at last! Before I left I emailed the boss of the Social Services lady who's dealing with Dad, politely explaining the urgency of the situation in the hope that she might have a bit more power to push things along.

I'm glad I did. I got a call this afternoon from the boss lady to say that they'd found Dad a respite place in a residential care home not too far from his current address and they would be picking him up shortly.

SS and the community mental health worker will go into him midweek when he's settled in and assess him further, talk to him and find out where he wants to go from there on.

THANK YOU.

2tired2bewitty Fri 17-May-13 18:23:37

That's good news FLJ, I'm glad things are moving in the right direction for you.

If you can possibly be there when SS go to talk to your dad that would probably really help. I know that one particular problem MIL experienced was after the immediate crisis had been dealt with, elderly relative then claiming that actually things weren't that bad after all, don't want to be any bother. So long as the person is considered legally competent SS can't do anything if they are being told all's ok.

ParsingFancy Fri 17-May-13 18:35:53

Someone mentioned this mobility aid on another thread. Would this be of any use to your dad?

Cricket

Lots of good luck with finding longer term solutions.

FJL203 Fri 17-May-13 19:14:41

Thank you 2tired and Parsing.

Unfortunately I can't be with Dad next week as I need to work (self employed so if I don't work we don't eat) and need to save the money, time off and goodwill of whoever will pet sit/DC mind for me for when Dad has his scans and their results.

That odd contraption looks interesting! I'll have a word with Dad's care staff about it and see whether they think it will work for him, thank you.

Numberlock Fri 17-May-13 19:18:52

Apologies if I've missed it but could your dad self-fund residential care?

FJL203 Fri 17-May-13 19:24:48

Not for long, I shouldn't think, Numberlock. I have never really discussed it to be honest (it's not the done thing in our family, to discuss the vulgar penny), but considering the rates charged by residential care homes I'd think it unlikely.

WynkenBlynkenandNod Fri 17-May-13 19:30:01

It might be worth gently broaching the subject of money, though I know it's hard. Mum had a fair bit more than she let on.

Numberlock Fri 17-May-13 19:31:04

I think there are a few things you can start to do, it will be tough and frustrating but you will get lots of support on here:

- get Power of Attorney
- persevere with SS and assessments
- consider moving him nearer to you

Sorry my reply's quite short but I'm on my phone. I'll be happy to help or advise as I've been through all this with my mum, just let me know. (And I'll reply on a proper keyboard!)

FJL203 Fri 17-May-13 19:31:59

It's certainly worth a try but knowing how the evil poison dwarf ex stepmother bled him dry before discarding him when he got ill and was of no more use to her his background and circumstances I don't think there's much hope. wink

FJL203 Fri 17-May-13 19:36:44

Thank you Numberlock. I don't know that Dad would want anyone to have Power of Attorney and if he did I think my half-brother, who is closer to him geographically, would be a better choice. When Dad's had a chance to settle in I'll talk to him again about moving nearer to me. He's happy to do that or to move nearer to my half-brother, it's more about finding the right place now that he's thankfully got appropriate care around him for the present. (My apologies for the half brother "drip feed", we have a bloody peculiar family and it would take half page just to explain!).

tigerlilygrr Fri 17-May-13 22:37:51

Can I second the power of attorney suggestion? Most people think that power of attorney means immediately handing control of finances over to a third party. In fact you can complete a lasting power of attorney form for either your health and personal welfare, or finances, or both, and specify that they will only come into effect if you lose the capacity to make decisions for yourself. If you fill out the firms whilst still mentally capable, it will cost in the low hundreds. If you wait until mental capacity has been list, it will cost thousands, and probably be taking place at a very distressing and difficult time for everyone concerned. MSE explains it well here.

tigerlilygrr Fri 17-May-13 22:38:38

Ah terrible typos. That should read mental capacity has been lost.

HongkongDreamer Sat 18-May-13 08:41:26

What about district nurses? Or occupational theapists? They can assess his home and adapt it to meet his needs. Phone his gp surgery and ask how to go about this

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