Way forward with housebound mother's care.

[Moanyjoni]

This could be long, apologies. But I am so embroiled in this situation, I can't see the best way forward, and would appreciate any advice.

My mother is not particularly elderly as it goes; she's only in her early seventies. But she has many medical issues which make independent living impossible. She has small vessel disease,which has rendered her very immobile, with urinary incontinence and vascular dementia.

She falls regularly. Gets about her flat using a walker, but still falls. At the moment, she has 4 carers a day, who dress and undress her; prepare meals; bathe her etc. She has a friend who shops for her, takes her to the GP etc. But she is becoming a regular at the local hospital. Her falls become more regular, and she lies and waits for someone to pick her back up basically. She also has osteoporosis, so her bones break easily.

A year ago, after a fall, social services assessed her, and agreed she should be in some sort of residential care setting. She stayed in hospital and a care home for over 4 months, but she insisted she wanted to go home, and that's what happened; to the shock of the staff caring for her, who raised their concerns with social services at her vulnerability - she still went home.

Her friend who helps is difficult, he has a drinking problem, is drunk most days and has been known to shout down the phone at both me and my brother when drunk as he feels we don't do enough for mum ( I live 90 mins drive away and have 4 kids - 9, 6, 3 and 3mos - I visit her once a week). He insists he can look after her - he can't. But he gets angry when its suggested he can't cope and, to be frank, I'm quite scared of him.

Her last hosptial admission was a few weeks ago, and I was told by two different members of staff that she would not be going home, and would be moving into residential care. Next thing, she's discharged to her flat...

Her dementia is obviously progressive. She remembers me and my bro, remembers my kids, but not their names. Forgets she is disabled and tries to do things she can't, which is probably why a lot of the falls happen tbh.

I'm not sure of the way forward. Her friend phoned tonight. She had fallen again; he couldn't get her up. He wouldn't call an ambulance. He couldn't get hold of my brother (who's local to mum). In the end the carer turned up and they managed to get her up and into bed.

Any insights, advice etc would be great. I am out of my depth and too involved to see the wood for the trees.

Thanks for reading such a meandering long post.

Hi, I work as an occupational therapist with older people and see similar situations to your mum's quite often so have some practical suggestions/ thoughts.

with regards to the decision for your mum to return to her own home then this should have been made by using the mental capacity act. What I am assuming will have happened is that probably someone from social services will have carried out an assessment of your mum's ability to make an informed decision about returning home, this includes ensuring she understands the risks e.g. falls etc of going home. if someone has capacity to make this decision then they will usually return home if this is their wish - I won't go into the history of the act as it may not help you now.Have a look on the Alzheimer's Society website at their fact sheets- don't worry that your mum may not have that exact diagnosis, they provide readable fact sheets which are well worth looking at and will explain it more. I see people return to risky situations but if they have capacity then they are free to make "unwise decisions" which may explain why your mum returned home even though care staff felt this unwise. ( hope that makes sense)

I wonder whether your mum may also benefit from telecare. Telecare are sensors that work via a control unit and can either be used with a pendant alarm (lifeline) or other types of sensors - falls detectors, smoke alarms, flood detectors etc. Have a look again on the Alzheimer's Society website, I'm sure they will have info on telecare/assistive technology. it may be useful to look on www.dementia.org/ website. This is a great resource for more info on equipment to help.

I suspect your mum may have already been seen by her local falls team but it may be worth checking this with the GP and asking for a referral if not. these teams are usually made up of different professional groups and may offer some other strategies to help your mum.

Sorry the reply is so long winded but hope it helps. one other thing is that if you feel the friend may not be benefiting your mum then it may be worth speaking to social services about other options including direct care payments but this can get a little more complicated though they should guide you through it.

Hope this helps,

Firstly, thank you for replying in such a through manner.

Thanks too for directing me to Alzheimers.org - I hadn't visited them as I hadn't realised that they actually deal with all kinds of dementia. There is a veritable mine of information there that I shall use - wonderful!

I think you're right and that, at the moment, Mum is being assessed as having the mental capacity to decide to go home. When she's lucid she's very together still. She was an extremely intelligent, independent woman before this horrible disease took hold. The trouble is, she forgets how disabled she is from moment to moment. E.g., when I visited her on Christmas Eve and told her the next day was Christmas Day, she was all, 'but I haven't done any shopping; I'd better go shopping'. She hasn't been shopping for a few years now.

The telecare thing might be worth looking into. She has a buzzer, but often doesn't press it. The trouble is, when she does, they either ring me (and I'm 90 minutes away, so not much help) or my brother, who can help if he's not at work, but doesn't drive. The housing association flat she lives in used to have a full time warden on site, but she was forced into retirement last year, and now they have a part time warden who travels in from 30 miles away!

As for her friend: he receives no carer's allowance. He has taken this role on himself and although he drives my mum mad, when given the option of residential care or going home with friend helping, she immediately opted for the latter.

I think, while she is assessed as capable of making decisions for herself, there's not a lot we can do to change things.

But thank you very much for your reply, and for taking the time to try to untangle the situation!

Hi, you're very welcome, it does seem a little like watching and waiting I'm afraid which must be awful for you and your brother. l do hope things improve a little for you all.

take care.

moanyjoni could your mother live with you?

I see a fair number of patients like this and agree with disorganisedmum , If someone refuses to accept they need 24hr care it's that awful stage of waiting for a crisis to happen for the situation to change.
So sorry you're having a stressful time atm Moanyjoni , is there any chance she can relocate to somewhere closer to you?

We have 6 kids in 2 small rooms when dh's kids are staying. 4/2 the rest of the time, so, no - we just don't have the room. It is something I've considered. There's also a step down to the kitchen; a high-sided bath; an open planned downstairs. It's not suitable accomodation for someone with her needs.

Also, my ex-p's mother took on her elderly parents just before they died and it nearly cost her her marriage and her sanity. I don't think I'm selfless enough to make that sacrifice, I'm afraid. :(

Sorry cross post - that was in response to funnyperson's question.

We've looked into moving her closer, and that's something worth looking at again, I think.

Actually, with that in mind. Does anyone have any insight into how to get someone transferred within what used to be local authority housing? It would be better if she were nearer, but that does mean crossing the county line and therefore moving housing associations. She would also be better off in more sheltered accomodation, which is what her complex was originally, as I mentioned before.

Thanks everyone for your responses. It's a tricky situation indeed; every new crisis/broken bone we think 'this time', it's horrible!

Not sure where in the country you are - but call SS and ask if they have something called extra care housing - here, this is a scheme where clients have their own property in a massive block of flats (HB can pay for it) but it is staffed 24 hours a day. The criteria is that you need to need at least 12 hours care per week (your mum fits this) and SS have to assess the need - this could be a compromise for your mum? (as she would have to agree with it) - if they do have these in your area i would suggest taking mum to see one.

I have a feeling that when she is moved from her own home, she will feel disorientated and go downhill fast.

My own mum insisted on staying in her own home to the end, which was a lot of expense, and lots of work for the rest of us, but her decision. I regret to say I could not have coped with living with her.

Hi, I agree with PigletJohn, moving people to unfamiliar surroundings when they are already confused may often bring things to a head as it's so much harder to settle somewhere new when the world is already confusing enough.

I'm not sure I could cope with living with my mum either. It sounds horrible but I absolutely hate being told what to do in my own home and I wouldn't want to live in hers. I wish we were both less bloody minded.
The thing my mum finds difficult is communicating with the carers. She finds it hard to even ask them to use soap in case they decide to beat her up.
Even so she is better in her own home with my dad. The carers come 4 times a day cos of dad and I visit twice and various therapists in between so they dont get much time to themselves. Mum being mum we think she could be playing up the absent mindedness so that someone else will come and take over her burdens not that she has any. The carers are organised by social services and have been criminal bureau checked and have had training. This doesn't mean they are necessarily any good but they are there which is helpful. Sorry to hijack.

Sorry, was clearly in a bad mood when I wrote that and it turned out I was in the throes of the Winter Vomiting disease.
moanyjoany I find it helpful to create a framework for my parents, of people who look after them, together with a big desk diary for phone numbers and appointments.
Medicines are in big lettered labelled boxes (thick black felt pen), one for morning and one for evening.

Thanks for all your insightful posts. Apologies for radio silence - my broadband is down. On my phone, so apologies also for any typos!

I agree that moving a dementia sufferer is disorientating and almost cruel, but I feel we've got to the point where every hospital stay is even worse.

In that regard, she's back in as of yesterday. Only 3 weeks since she was discharged, so we'll see what is decided this time.

The extra care option sounds excellent, so I shall look into that, thank you. It's a wait and see situation indeed.

Thanks again though, to hear from others with similar concerns makes me feel less alone. I really appreciate it! :)

Thinking of you. These are the sort if things that keep me awake at night too. Dad is also starting to get " lonely" like a toddler with separation anxiety if mum isn't in the same room at times, so doing jobs In th house is hard.

His thought on that was " I think we should get a dog, it'd be company when you are out shopping all day as usual"...

(bangs head on wall- my mum hadn't been anywhere without him since my dis went to Spain on 21/12/12. We did go to lidl on Thursday though..this will npbe awful if it continues/gets worse)