To ask what the options are for elderly mother coming out of hospital not wanting to go into care home?

[loveyouradvice]

Hi all

This is a new world for me.

Elderly much-loved mum has been living independently, with us popping in with food and drink three times a week, though in early stages of dementia. She has now just had a big operation and been in hospital almost three weeks.

She is clear she doesn't want to go into a home but does want to live nearer to us. She will need carers going in, as well as us and ideally someone on site who checks if things are okay. She hasn't been spending any money for ages so has enough to fund whatever is best for her and could buy or rent.

I imagine this is sheltered accommodation - or something else?.

I've no idea how this works - can anyone who is more knowledgeable give me an outline of how the system works, whether there are other things I should be looking at and where I look. And what sort of levels/options there are

Basically - anything you think would be useful to me, as a total innocent who's about to plunge in fast! All advice very gratefully received.

You can ask the local authority to carry out a needs assessment. They have a statutory duty to do this, even where someone is self funding. I think there is a template letter on the Irwin Mitchell website. At least, there used to be.

Have a read up on dementia so you get an idea of what is coming. There is no fixed timeline for its progression but depending on luck and age, decline can be rapid. Dementia sufferers are very vulnerable and I am afraid there are people out there who will take advantage. My mum seemed was fine with it until the day she handed me £60 to pay for 2 ice creams and I realised it had progressed far further than I could see with my weekly visits.

Carers can certainly fill a gap but I would look at what long term options might be available. There will come a point where she will be living in a parallel universe and at that point, it is difficult to keep sufferers safe - she will need 24 hour care. Have you discussed with the hospital and a social worker exactly where she’s at? Do they consider her capable of independent living with carers who pop on?

There are lots and lots of options. The best thing to do, I think, is be clear about her needs going forward and how these might change, what your potential timescale is (someone aged 60 is likely to live longer than someone who is 85, for example, although dementia can be very life limiting), and then look at options. There is a home near me that incorporates dementia care at 2 different levels - semi independent and then locked care home and then has a nursing facility for end stages. Costs are high, eye wateringly so, so do think about funding for the long term. A substantial saving’s pot will soon disappear.

Jump onto the elderly parents thread. They have been where you are going (sadly). Help the Aged also has advice.

Whilst I fully appreciate your mum does not want a care home, now is the time to think ahead as you don't want to be running around when a crisis hits. Sheltered accomodation may not be a long term solution, depending on the nature of her dementia.

At the very least, get her wishes down and Power of Attorney recorded in case it's needed.

Def get a care needs assessment from local authority. Sheltered accommodation sometimes have a warden who check on them, but some sheltered accommodation do not have warden. Also have a look at ‘Assisted Living’ accommodation. If you have carers going in, at some point she may need a keysafe, so that the carers can get in if she’s unable to answer door.

Thank you all - great advice. And can't think why I didn't think of looking at Help The Aged.... going there now.

Really appreciate your help - and yes, I can see how a savings pot will vanish fast. Difficult to know how to plan - she's 82 and doctors say unlikely to be here in 2 years time- but her parents and grandparents lived much longer

You will need a care assessment done in the first instance. Be prepared even if your mum's assessment comes out as high need there are not that many care homes that take dementia patients. The accommodation you look at will have to have a locked door policy - patients with dementia tend to wander.

My siblings and I looked after our dad, in his own home for 6 years. Then he began to deteriorate very quickly and we had to bring in home carers, who popped in 3 times a day to help with his basic needs. Two of us still had to call and see him every day, one at lunchtime to make sure he ate and one at bedtime. Although the carers were a godsend, in as much as we didnt have to spend all day, every day with him, the care provided would not have been adequate on its own. That lasted 3 months as dad became very violent towards the carers, who he seen as people coming to rob him.

So we had no choice than to take it in turns to spend each day with him.

Eventually, when we were all at breaking point dad was finally afforded a place in a care home specifically for dementia patients. He refused to leave his own home. It was hell on earth trying to get him there. By this stage he couldn't think for himself, had to be spoon fed and was doubly incontinent but he would not agree to go into a care home. Once he was there he settled very quickly, which was a relief. At this stage we had been muddling through for 8 years! It took its toll on all four of us, well 3 really, the eldest brother "lived too far away to help out. But let me know how he's doing".

Social Services don't have the resources so will convince you that your mum is better off living in her own home. And that is right, for as long as she has some independence and you are happy with the care she is receiving from yourself and outside agencies. However, once her condition deteriorates and you are no longer happy or comfortable caring for her in her own home you will have a battle with SS to find an appropriate care setting - even if your mum is self funding. Most of the homes are already full and as sad as it is you will be waiting for someone to die so your mum can have a bed. There will be many others on the list before her. Good Luck

What are your Mother's Doctors saying? Normally it's them that starts the ball rolling in terms of asking the Hospital SW to see the patient, if there are any discharge issues.

Theu do their own assessments and the LA takes their findings into account.

Start by getting advice, but a patient is usually discharged, with all the checks done, it's part of the hospitals duty of care.

Usually a transfer between LAs, in a case such as your Mother's does mean that your best accepting a SW, if offered one.

Ask adult social services to do a full assessment.
I know this is far in the future for many those assistance robots, they monitor heart rate, blood pressure, can detect a fall and contact an emergency contact, some have a build in video camera to make video calls, they give medication reminders.
If I find the link I'll attach it.

www.independent.ie/life/health-wellbeing/health-features/my-robot-companion-has-changed-my-life-38009121.html

A friend of mine booked convalescence care for her mother after hospital. It was short term care until she felt strong enough to be independent again. It is a good half-way measure because some people find they love it once they have it and decide care suits them after all. And others, like my friend's mum. were glad to be helped but rushed home as soon as they felt well enough.

Agree with the above posts. Refuse hospital discharge until a package of care can be put in place for her at home. Speak to the nurse in charge about referral to the hospital social work team (if not done so) who can conduct the assessment and arrange at home care.
Does she have a dementia diagnosis? Can your DM make her own decisions (have capacity)? Is she safe at home?
Start out with a package of care at home. If she does deteriorate, her needs can be re-evaluated for nursing home placement later on. The trajectory of dementia illnesses is very individual--your DM may never need nursing home care.

A diagnosis of vascular dementia over the age of 80 has a four year life expectancy. My mum’s siblings all went into their 90s so at 82 with no physical health problems, I thought I was in for the long haul. Unfortunately, she had an accident and never recovered and it essentially advanced the dementia to the end. So you just don’t know. Prepare for the long term and be prepared to shift and cage as things progress. It is very, very hard emotionally so do look after yourself and do make sure you understand what is going to happen, how to handle the dementia (it is very frustrating) and just so you k ow what you’re looking out for. There are a number of Facebook groups for support - I found Dementia Connection particularly useful but it’s not the only one.

Echoing what others have said, don't allow them to discharge until there's a package of care in place that you're happy with. If you're not happy and don't think that it will be suitable the magic phrase is "unsafe discharge." They will be keen to get her out of hospital but the last thing they'll want is her coming back in a week after a fall. Ask for Occupational Therapy and Physio referrals to assess what she's physically capable of doing if it's not been done already. Adult Social Services will be the co-ordinator so giving them a ring might be an idea.

We were offered loads of stuff that we didn't think we'd need for my parents in terms of equipment, but we were advised by those in the know to say yes to it all because it's a LOT easier to get it whilst you're in the system and it's all been used since. Don't whatever you do become terribly British about it and say "Oh I think we'll manage" because it's a rod for your own back!

I sympathise massively. My 83 year old has been in hospital for 2 months now (cancer) and has gone from driving and living independently to unable to walk without the assistance of two people. The hospital want to stick her in a care home (she has savings in excess of the cap) and are refusing to recommend her for further rehab, which means she is going to end up bedbound for the rest of her life. Helpful advice here - my brother is keen to get her home asap but isn't taking on board what 24 hour nursing really means and thinks her own bed will be sufficient (rather than hospital bed). They're both in for a shock if she can't get more rehab to get her at least walking with a walker.

Fabulous advice all.... we are insisting on all those evaluations as she seems to have fallen through the gaps.

And love this phrase - will use it if needed unsafe discharge

Hmm - my mum would love a robot - she's always been ahead of the curve on technology, as in cute things that do things for you, and less keen on people....