Alternatives to care home

[MarieInternette]

An elderly relative with dementia has recently been placed in a care home. They are very, very unhappy there. Not because there’s anything wrong with the home as such, just that they have always lived alone as an independent person and cannot settle there. It’s heartbreaking watching them cry and hearing them plead not to be taken back when we visit.
Some days they are more lucid than others. Some days there’s a lot of confusion, other days they are just like normal apart from the odd confused comment. I know the time will come when as the situation worsens they will definitely have to be in a home but in the meantime are there any other alternatives to care homes? They used to have carers coming in to help 4 times a day before they had to go in the home. There’s no way they could move in with other family members so I was wondering about whether night carers are an option? They live in a 1 bed bungalow, or did before the home. I’m not sure about finances but possibly they could afford private help. There’s no sheltered housing nearby so that’s not an option.
I’ve no experience of anything like this so just wondered if anyone could help with suggestions.

Hi op, depends on what is available locally, and finances to some extent. For some, day services can be an option; live in care/nurse support; or finding the right home? Some homes are brilliant, like the Belong homes in the north west area for maintaining independence. I'd imagine you'd want to consider contacting the local authority and get in touch with an adult social worker potentially to look into packages of care. This is based on me being a dementia carer for many years before I left to have my little boy, so perhaps someone with more helpful/ upto date advice will respond to you. You could also get in touch with a related charity, they might sign post you to the next possible steps. You could also put together a folder of prompts for your loved one (picture of their home, picture of their new care home, a brief description of your family set up) this can help yo orientate the loved one, and give the carers dome ideas of what to talk about with your relative to reassure them. Just ideas, hth, apologies if it's not useful or out dated (as I said I'm a sahm now)good luck x

*to orientate

• Some ideas Sorry for the typos x

Who placed the person in the care home? Was this after a social services assessment?

Dementia only gets worse. Sometimes slowly, sometimes quickly. It's unpredictable.

How long have they been in the home?
MIL spent her first 2 weeks quite angry, telling everyone within earshot that DH and I were crooks. Then she settled down.

Not easy for you, but sometimes a home is the best place to meet someone's needs, which can rapidly develop into needing 24 hour care.

Why have they been placed in a home, it sounds like it was not an active choice by your relative? Are they self funding? Is their bungalow rented or owned, is it being sold or have they given notice?

Other options very much come down to what funds they have available. Some social care funding is available, but on what you describe it's unlikely to meet his needs.

4 visits a day are the most SS will put in place before it becomes cheaper for the person to be in a care home, that's what we were told about a relative of ours anyway. If you want more care in place at home than that then it will have to be paid for.
Does the person have finances to pay for care? Does someone have lasting power of attorney for them?

Hi OP, care at home if you need night-time carers as well, is very expensive.

Unfortunately, I suspect your relative is trying to voice that he/she wants to go back to life as it was before rather than making a value judgment on wanting to be at home with carers. I spent months like this with a relative who sadly really was not happy at all for the last 12/18 months but what she wanted was life as it was before and sadly & cruelly, that's not an option.

Have a look at supported living, there are some within dementia services where they have so many hours of care a week. Basically I would say it depends what stage in their dementia journey your relative is at.
Personally I think perhaps give them longer to settle within the care home, most do settle within a few weeks. Also perhaps they are becoming unsettled since you are taking them out, maybe leave that for a while no matter how well intentioned you are.

@GU24Mum

Hi OP, care at home if you need night-time carers as well, is very expensive.

Unfortunately, I suspect your relative is trying to voice that he/she wants to go back to life as it was before rather than making a value judgment on wanting to be at home with carers. I spent months like this with a relative who sadly really was not happy at all for the last 12/18 months but what she wanted was life as it was before and sadly & cruelly, that's not an option.

Certainly this is the case for my relative - they would not cope outside residential care but they wish they could go back. They also really disliked the carers appearing when they lived at home, so wouldnt have liked more carers either

Have you asked what they are like when you are not there?

It is not unusual for visits to trigger wanting to go home and the person be settled at other times.

We were advised never to say 'Good-bye' but that we were popping out to the loo, or some other excuse and go - this massively minimized FIL's distress when we visited otherwise he always wanted us to take him home with us.

A friend's mum with dementia has a live-in carer. It costs £1700 a week and the person stays for 2 months then has a fortnight off. The family are over the moon with both the main carer and the fill-in one - both are excellent. They arranged it through an agency after mum had a fall and was due out of hospital. It was originally short-term and funded by the LA (or NHS?) to get her out of hospital at the start of the pandemic, but the family were able to take over the funding when that finished.

The carers are meant to get a couple of hours off each afternoon, but the main carer prefers to save hers up for less frequent days out. The agency supplies another carer for those times, or one of the family fills in.

The carer sleeps in one of the three spare bedrooms in the house and does everything day to day, keeping in daily text contact on the family WhatsApp group about doctor appointments, what she wants for shopping etc. There are now twice daily carer visits too, to help lift mum in and out of bed.

I would love the same set up for my mum as my dad gets to the point of not coping ( I keep thinking we have reached that point, but keep being told no). My mum knows her house so well and would be even more lost without familiar surroundings and my dad there. But the spare bedroom is a tiny boxroom and I don't know how that 24hr live-in caring would work in a Wimpy semi.

My parents both say they don't want anyone coming in to the house, but in the end not having help isn't going to be a choice. And I do wonder if live-in care might be preferable to a residential home. Or a less worse option?

Very difficult
Live in care is an option that can be not too different to the cost of residential care in some areas (£800-1000 pw in my area of the southeast) so social services will sometimes pay, or pay towards it the equivalent cost of a care home and the individual or their family ‘top up’

But that only really works if there is a spare bedroom, and the carer is expected to be able to get a decent night’s sleep most nights.

If you are looking at a carer staying awake at night that is astronomically expensive and far more than a care home per week. Think sort of £350-400 per 24 hour period minimum.

Agree also that some people can feel more ‘restricted’ and feel it’s more of an intrusion having carers there at all the time at home, than in a care home. As they may lack insight into why they need the help.

My mil used to say exactly the same. But she didn’t really know what home she was wistful for. She used to say it when she was in her own home at the end of too. We had private care at home initially, but she needed more and more hours and it was really expensive (not that the home was cheap either, but it was cheaper). Night care was even more expensive, although we never had it.

I also never used to say goodbye either, just that I was popping out and we’d speak to the Dr about her leaving when I got back (I used to tell her she was in hospital and we were waiting for the Dr to decide what was wrong with her). It’s less stressful for them to understand than trying to tell the truth, which mostly confuses/upsets them more.

I’m also wondering who made the decision to put her in the home? There must have been good reasons, surely?

Thank you all very much for your replies. I’ll try to answer questions.

They were put into the home by social services.
Their house is a rented bungalow.

I think I need to speak to the home to see how they are when one their own in the home. Also, I’m sure you’re right about wanting their old life back because even before they went in the home they felt unsettled and tearful some days. Maybe I just need to give them abit longer to settle but I will speak to the social worker about options. I’m guessing that they will be limited though as we are very rural and there aren’t many services around here.