Caring at home or using a Care home?

[Shakti]

An older member of my family has suffered a catastrophic stoke following bypass surgery. She is currently in hospital but they obviously need to discharge her ASAP. She is financially secure and DD have already telephoned to say she won’t be eligible for their help. She needs 24 hour care and would benefit from physio etc. She owns a house large enough for a live in carer or we could find a care/nursing home as there are many here in the South East. I would like to find out more about live in care, people who have done it (would probably use an agency to ensure cover of sickness/holidays etc), pitfalls etc. Do the advanatages of being in own home outweigh any potential isolation? She struggles to communicate post stroke but on the whole has retained ability to think etc so hopefully the decision will ultimately be hers but we want to know a bit more before presenting options. An intensive period of rehabilitation would be good as she was so ill she missed much of the immediate post stroke care period when progress is most likely. Any thoughts or experiences to share?

Sorry, SS telephoned not DD!

I work in a care home so I'll weigh in a little here. Care homes can be very busy, noisy environments where as their own home can be quiet, calm and relaxing. Moving them from their own home takes them from a familiar place that they feel secure and safe in, to a place where they have to learn to adjust. A one on one carer in the own home can attend to needs much quicker than a couple of careers whom are caring for multiple residents. Personally I'd say, if they can; let them be at home x

Sorry you are all going through this. I think the decision can only be made by looking at what care resources you have in your area. It must be so difficult and you have time ticking to make a decision.

Could you possibly start at her home and see how it works out. You can always transfer her to a nursing home afterwards but it would be more tricky to do it the other way round as her home may be sold to afford the care home.

You need advice from the hospital she is in as to what her care needs are exactly - does she need 24 hour care? Would this be a live-in carer who can sleep at night or does she have night needs that mean you would need someone awake at night?

How many people are needed to look after her and are her needs predictable or unpredictable?

The cost of one live-in carer is going to be very different to the cost of a 24 hour package with double-up carers coming in when she needs 2 people to do personal care. And then if you are also thinking of paying for physio for rehab your costs are escalating further.

If she has had a massive stroke, I would guess she needs 2 people to care for her and so this will be a v big care package and so simply cost wise, unless funds are unlimited, this may tip the balance into a care home, knowing there will always be 2 carers present when she needs personal care.

What does she want OP?

Perhaps a 6 week stint in rehab with a view to going home with live in carers?

I have worked in care homes and hospitals and I have a slightly different perspective to ShanAmanda. I would say it depends entirely on how much care she needs, for instance, can she stand with the assistance of one person? Is she continent? Can she manage to feed herself if food is provided? How is her swallow; has she been assessed by an SLT and will she need soft food or thickened fluids? In my experience, a package of care at home works best for people who need a bit of help (ie with washing, dressing and housework) but if she needs the assistance of two people to transfer or needs 24hour care I would recommend a care home.

I have seen many people be admitted to a care home after being cared at home (often by family) who have actually suffered neglect; not because their family didn't love them, or care, but purely because they were unable to manage their care. And whilst there are some appalling care homes out there, there are also some excellent ones where your relative will receive amazing person-centred and dignified care. If I were in your position, I would arrange to see some homes and see what impression you get from them? I can give you some red flags to look out for if that would be helpful?

It all depends how good the live in care is....it can be variable to say the least.
As others have said, if 2 carers are needed 3/4 times daily then that puts costs up, the live in care usually needs 2 hours of daily respite as well. Good care home might be best bet
Lots to think about

It sounds like it is still early days and that the lady has missed some rehab. There are a few private rehab facilities that may be app if she can afford this. This would help her maximise her independence.

Long term care would depend on both her needs but also who she us as a person e.g. a very gregarious party going person may get lonely stuck in their own home but a quiet reserved person may find institutional care intrusive.

Good luck and this lady is fortunate to have family trying to do the best for her.

DarkYear also makes a good point about rehab. What are the hospital advising about her rehab potential?

There are care homes/neurological centres that do offer rehab but you need an accurate assessment of what is likely to be achieved as they will be ££££ more than a normal nursing home. BTW you will also be looking for a nursing home, not a care home by the sounds of it.

A spell in a rehab based unit may be beneficial and then take a decision after that, but it would might be another move to a standard nursing home - would she want to do this?

You need the advice of her stroke team as to what the rehab outcome is likely to be.

I would ask the discharge team at the hospital what the options are, there may be the possibility of discharge to a stroke unit forrehab

My mum had a stroke when she was mid 40s which resulted in severe brain damage. She was in a nursing home for years and it was horrific. The home had a good reputation, but she still was attacked by another resident (she is unable to defend herself) and didn't get any interaction through the day as no-one would move her and majority of the staff didn't speak English. She now lives in her own home with a team of carers (She requires two through the day and one stays over) and her standard of living has massively improved. She has only been able to do this though due to a hospital pay out so I know she is 'lucky' with this in some respects, without that money there is no way the level of care required would have been affordable. She is now early 60s and whilst there is no improvement to her physically or mentally, she is generally happy and due to how severe her injuries are the personal team she has is like a family to her which benefits her massively. This isn't meant to scare there are plenty of great nursing homes, perhaps if that's the route you go down trials at a few would be good.

There are pros and cons to both.

My DGF went into a home after a stroke. He could probably have been cared for at home however a. his area had a shortage of people offering this and b. being in his home stressed him out as his house was falling into disrepair and he didn't have the physical or mental energy to keep on top of it.

I would try to be guided by her, hopefully she will be able to express a preference and I'd not try to think what suits her needs best.

The poor woman is at the moment vacillating between wanting to stop eating and drinking in order to die and feeling as though she might still have a life worth living. Really tough. My gut says she should have a chance at rehab although the stroke team are very pessimistic about any improvement. However, she is the type of person that would give it her best shot given the chance, I think.

One person might manage her care with a hoist but yes, she would probably need two people for personal care and is incontinent at the moment.

Anyone know anything about private rehab in the South East, Surrey/Berkshire borders? She does not have unlimited funds but at 82 could afford to use funds for v expensive care for a short while. She would have to sell her home to fund nursing care in near future but between us we could fund a chance at rehab if that is what she wants. Has anyone obtained a package including intensive physio and OT in own home to start with?

It's a tough situation.

What would a life after rehab look like? Team are clearly saying she has v little rehab potential so what sort of things do they think will improve? If after putting all the effort in, would she think that sort of life was worth living?

I'll be honest, I have never heard of that sort of rehab package being delivered in someone's home. And she does sound borderline for being able to be cared for at home at best, given she needs 2 people for care.

I can highly recommend Christies Care for a live in carer. Everyone we dealt with was so helpful and we had an amazing carer move in with my mum for her final weeks.

Ring them for advice. Social services also need to do a continuing care assessment if she is being discharged from hospital....this is not means tested.

www.christiescare.com

I'm on some heavy duty pain relief so sorry if this is jumbled.

Having work in homes and in home care here's my opinion.

Care Home:
Pro's - There's always someone around.
It's easier to access outside services, (social workers, speech therapy, OT)
Specialised Equipment like hoists, adaptable bed and standing frames.

Cons:
In some homes the care given is to suit the staff not the clients, such as bed time, getting up time, having a cup of tea when the client fancies one.
Language barrier, some homes recruit staff from overseas and don't have a minimum English standard.
As a family, you may need to be constantly asking for changes and speaking to the manager about issues.

Home Care

It may be that she would have a live in carer but with a second carer to join for hoisting and incontinence care. So 8am 2 carers to wash, dress and out of bed, 2 carers for lunch time for continence care, in the afternoon the live in carer would have a couple of hours off with incontinence care before and after. Then 2 carers at bedtime.

Pros: It's her own home, with her own things around her. If there will be live in carers then she will build up a relationship with them. The company I worked at the live in care was 1 week on and 1 week off.
There'll always be someone with her.
If she has a suitable vehicle the carer can take her out.

Cons: She may feel intruded upon, a stranger in her home going through her things.
She may not like the carer.
The 2nd carer may be late or very rushed, so she could be in a soiled incontinence pad for longer than would be ideal.

I hope this helps

My DM was in a care home for four years, and before that she was cared for at home. By the end she had virtually no mobility and was incontinent, and there was no way she could have been cared for at home.

You have to look at how adaptable her house is for her needs. You would need to be able to find reliable carers, and yes you would definitely need more than one. My mum not only needed everything doing for her during the day, but she had to be turned in bed four times every night to prevent bed sores.

I am sure your relative would be much happier in her own home, and I really feel for her, but from our experience there was no alternative to full time care in a home, and we were lucky that we we able to find a very good one.

Thank you so much everyone for taking the time to reply. For those who said it is her decision I totally agree, although her son might not ☹️ I am just trying to research options for her, no point in her worrying about what to do if, as I suspect, she will not have much in the way of choice. I will call Christie’s tomorrow and have started to check out Care/Nursing Homes. She does, would and will hate all this, she was so independent before the bypass surgery.

I'm sorry OP. It's not a nice thing to go through

I work in hospital discharge. You need to ask the discharge team about a continuing care assessment. tnk

This is done by the ward nurses or the discharge nurses. They will complete a checklist which will indicate whether she is entitled to Fully Funded NHS Continuing Health Care or Free Nursing Care (which is paid by the NHS to nursing homes for the nursing element of care). You also really need to ask for a social work assessment which will outline what her needs are. Under the Care Act you are entitled to ask social services to arrange the care she needs and they charge you for it. They will have negotiated better rates with care agencies than they will charge you privately so it will work out better value for money even if you have to pay full cost.

Generally in my experience people do much better at home so I would try this first. You can always look for a care home later. She can be referred to the communty rehab services or local authority OT services for a manual handling assessment to look at whether she needs two people to manage her moving and handling or not. Hospital therapists often havent been trained on the latest techniques or have access to the right equipment so often say people need 2 carers to transfer when they could manage safetly, with the right equipment with one carer

Like pp says do ask for a chc checklist to be done, this is free, is dine by the nurses q d assesses her care needs, not how much money she has. You can access this online if you want to read a sample, it's called continuing health checklist. She may get funding for so e or all her care. If the hospital do not feel she will benefit from rehabilitation then if she goes home the occupational therapist and maybe a social worker will assess her home, arrange any equipment w d put you in touch with care agencies based on her needs. One person should not use a hoist, this is a two person procedure. If she does get help from the social services she can pay extra for any other help, overnight care, there is a shortage of carers in the commu ity, it doesn't happen immediately. Do not let the hospital discharge her until either she has a care package set up at home with all the equipment, or they transfer her to a community bed or she is found a nursing home placement. What sort of area are you looking at in the s.e. or Surrey.

With my DF, I had to arrange care after my DM died. After a year or so, as I was going into hospital I had to arrange respite care in a nursing home. It was very expensive but just awful. More isolating than being at home. My DF went downhill in terms of memory and general health. Other ones in the area were similar. When he came out it was clear he needed 24 hr care. I contacted a number of agencies. Most will have a rota system of 2,3 or 4 people taking it in turns to provide the care. Quality was variable, some great carers, some not so great. Also we ended up having several carers, not the 2 or 3 originally mentioned.
However, he picked up hugely being back at home. Some of the carers were just lovely, they cooked him home cooked meals, vastly better than the stuff in the care home. They could tailor it to his preferences, they would chat to him about his life.
Downside was none of them had their own car, so unlike the hourly carers he’d had before they would need to book cabs to take him anywhere and they were a bit reluctant to do this - I had to mention it a few times. A few of them weren’t very fit so didn’t want to take him out in wheelchair.
In general, care at home was much much better for him though.

This is really helpful , I am going to cut and paste some stuff here to send to her son. She would ideally be local to Ascot, on the Sunning Fale side, as her friends would find it easier to visit.