/ Health

Do you have the confidence to arrange care for older relatives?

Older person's hands being held

New Which? research has found that people struggle to find the information they need to arrange care for older relatives. Do you have experience of arranging care for yourself or for a relative?

This issue is particularly prevalent amongst the ‘sandwich generation’ – those aged 40-60 who look after both their children and their older relatives. Our research found that only 40% of this group feels confident making decisions about arranging their care and around four in ten (44%) are worried about this responsibility.

With people living longer and a higher prevalence of long-term conditions, the ‘sandwich’ generation’ are a growing group. Older people often need support in making care arrangements for themselves and a lot of this responsibility can fall on their children or other relatives.

The challenge of choosing care

This is particularly the case given that care is often arranged in a crisis, for example if someone has gone into hospital and a care package needs to be arranged quickly before they can come out as Convo Commenter Jean told us:

‘We have recently been arranging care for my mother-in-law, a 92 year old dementia sufferer who my wife and brother had been caring for in her own home. When the situation deteriorated further, we had to actually arrange for Mam to be taken into full time care, and we researched a whole range of care homes in the area before making a final decision. One of the decisions was based on cost, as Mam had no private means, other than selling her small home, so as Lasting Power of Attorneys, we felt we had to make her small money pot last as long as possible.’

Arranging care can be a stressful time for the person themselves and their family. Whether you are a full-time carer for a relative or providing support at the same time as caring for your own family, the pressures can be overwhelming.

What are your local care options?

Yet trying to work out how the whole health and social care system works is extremely difficult and people don’t know always know where to start. For example, what type of care is appropriate? What providers are available in my local area and how do I judge their quality? What are the various assessments that have to be done for to get support from social services? What funding might I be entitled to from benefits, my local authority or the NHS? All this makes it even more important that older people and their families get the information and advice they need at this time. And yet, three in ten (29%) of the people we surveyed said it wasn’t easy to find the information they needed.

This weekend we launched Which? Elderly Care, which is a free website offering practical information and advice about arranging care. This includes the different types of care that are available, either at home or in a residential or nursing care home, how to access them and the different ways to organise finance. We hope that this website will be a useful starting point for people looking to make decisions about care and will be a resource that can be drawn upon at different points in your journey.

Do you have experience of arranging care for yourself or for a relative? What were the problems you faced? Is there anything else you’d like to see on the Which? Elderly Care website?

Comments
Profile photo of Beryl
Member

An elderly neighbour told me she intended to stay in her own home as long as she could manage on her own. One day I received a ‘phone call from Age UK to say she had fallen and couldn’t get up. As I had a key to access her home I managed to get her upright with the help of another neighbour. As a result of the trauma she became very unwell and on medical advice agreed to go into a local privately run care home.

In order to fund her care she had to sell her house. The problem was unscrupulous investors were fully aware of her need to sell her house and deliberately hung on until she was desperate and she finally had to let it go for way below it’s market worth. I am at a loss to decide whether this is legalised theft, just plain exploitation of the elderly and vulnerable or an example of capitalism at it’s very worst.

Member
Scraggs says:
20 February 2014

That is despicable. There should be a department within Local councils that oversee this kind of situation to make sure the seller get’s the market price for their property. If the Govt state that the elderly should pay for their own keep, they MUST put this into operation to ensure that when they have sell something, they get the best possible price for assets they worked all their lives to get. This generation are the people that made Britain Great. They worked all hours, day and night, to raise this country during and after WW2. They did not have the luxury of not working and relying on benefits.

Member
Sue Rouse says:
20 February 2014

We needed to arrange home care visits for my mother and contacted a number of local agencies.
None seemed particularly impressive so we chose on the basis of the individual carer we would be allocated, she seems a mature and competent person.

And so she turned out to be, except we did not have her for long as she was substituted by an ok but not so good person. Then my mother started getting new carers on a regular basis as the company was “suffering high staff turnover”. Very unsatisfactory.

Member

I had the fun and games of having 3 parents needing to go into a home. since 2011 my father who desperately needed care but was being looked after by mum who was struggling to cope with dementia and later found breast cancer 2 days after he died of untreated cancer too was in the end out in bupa home by the social, but it took alot of screaming at doctors surgery and oin phone to social to make them get their fingers out as neither wanted responsibity. Then 2 days after he died , me getting the phone call gone midnight saying your father has died you need to remove his boidy now. I had no idea about funeral arrangements and told i had yet to do anything, i was told you knew he was dying and should have seen to it. no word of sorry. i had to go on computer find a funeral firm and wake the man up to ask if he could help me. 2 days later mum saying she had bad night i was talking to her and her nightie slipped exposing a large breast cancer that was open and with mrsa in it. Got her sorted out wit my doctor and later moved nearer to me, but the dementia was getting worse and the shelter warden was determine mum could not stay there to the point of harrassment, We were then forced to put her in a home 26 miles away as being the only area that social had homes and mums 2 pensions not enough to pay her care. thankfully she seems contented. Then mother in law was getting to alarm happy calling out doctors and ambulances often and then into hospital so we knew we had to get her in a home too. Went into nursing home temporary and hated it and was determine to not settle, got her moved into a care home and she she still put up a fight saying she was capable to look after her self and we were told by the doctor if we did not sort the situation they would do it legally as not suitable to go back to her own home. we were then presented with options of her buying about £80,000 care package that would last her remaining years but she was already 93 so we decided we would rather try to do up her home and put it put to rental to earn money and protect the property. thankfully it has been the right decision as she died 4 months later. I went from knowing little to coming a lot wiser in a short time. using the www to read up on homes, inspection reports etc; It is a hard journey to travel and all the stress was brought home to me and my own breast cancer with many operations since last year. one thing we have come to the conclusion on is that you need to rely on your instinct, we noticed that where my 92 year old mum is there is lots of staff around and kindly, but the homes mother in law was in seemed to have staff who were never around that much or did not have time. I suppose until a decent wage is paid for staff then there will always be staffing problems, after all why would most people want to do a 12 hour shift for basic wages.

Profile photo of kaiach
Member

arranging care for older reletives

This problem also applys to trying to arrange care for your disabled children when you are no longer able to do so, there little or no help from the Authority they could not care less

Member
agnes stevenson says:
21 February 2014

My mother in law is 95years old ,and my husband and myself always said that we would keep her in her own home, well things don’t always workout the way you plan,she had to go into care last year but we had great service from the assessment doctor ,we were given a nurse two social workers who helped us through the whole process step by step they visited my husband and myself at our house many times and they were only a phone call away,they also helped us pick a home that was right for my mother in law and they visited her for a few months to see her settled in ,I can’t fault the service that we have in East Lothian but I hear that it is not the same for everyone, and that is a shame as we know what a stressful time this is for a family members.

Member

I was a carer for ten years.Information was dificult to find. The awkward people were the ones from Social services who made one feel as if one was an idiot, being awkward. We managed because I retired early and had time to research what was needed and was fortunate to find some very helpful and supportive people.

Now I am reaching the age when this problem is beginning to raise it’s head for my future,with no carer. There must be many like me, many of whom will not be on the internet either.
It’s good that you are attempting to help potential carers,BUT please, the need for available help and advice for people like myself without a potential carer is really quite urgent and the thought of being in the hands of the sort of people I’d had to deal with from the Social services, before, is quite frightening.
I was reasonable young, healthy and clear thinking in those days and could cope with them.
But now!!

Member
David says:
7 March 2014

I agree re Social Services. In Hertfordshire my mother who lived in her own home, a council house, and was 86 deteriorated rapidly with what was obviously advanced dementia. She didn’t recognise me, her own son, and was obviously in great distress and had undergone a serious personality change. The Social Services woman refused to accept it was dementia and said my mother was just a bit confused. Because the amount of funding available for Care is dependent on the conclusions of Social Services, this situation was completely unacceptable and I had to do something about it. I decided to seek a second opinion which was arranged for me by a local NHS manager where my mother was hospitalised. The conclusion was that my mother had advanced vascular dementia. When the Social Services woman found this out she phoned me and was extremely rude and aggressive to me demanding to know what right I had to go over her head. As a result of getting the right diagnosis, we found the best Care Home for her in Cheshire where my wife and I live. She died around 2 months later. The behaviour of the Social services woman was quite disgraceful. And she withheld some of the funding which would have been due in Hertfordshire because she said Care Home fees were lower in Cheshire.

Member
Rose Coulter says:
23 February 2014

Three years ago my father died. In the six months before he died, I had power of attorney. He was unable to look after himself but refused to go into hospital. He agreed to go to Rehab but was hospitalised after this, after spending some time in a nursing home. I fought for NHS Continuing care, both before and after his death. I was stone walled at every attempt to obtain this. I was successful 3 months after his death but it was a pyrhic victory.

Member
yvette says:
2 October 2014

Hi Everyone, I am very new to this but in need of some advice! My mother is suffering from probably later stage dementia, she was until 5 days ago living alone with support of a care package, her social worker said she can no longer stay in her home (which i agree), she gave me 1 care home to look at which was horrible, mum had a fall and is now in hospital, i have since found a care home vacancy near myself, as social worker told me to find 1 that i liked. Mum is now under hospital social workers and they are telling me she cannot go straight to the home i have chosen and she must go to another to be assessed free of charge (mum is not self funding) for 4 weeks, all the ones they have said she can go into are 60 miles away, which is too far for me to visit as i have a young daughter at school, look after my grandaughters and my mother in law who also has dementia problems. It will be impossible for me to visit regularly and i would have thought that family visits are a big part of her assessment needs. I also feel that her original social worker should have done these assessments 3 weeks ago when she said a care home is required. Does anyone have any advice please.

Profile photo of Emma Callery
Member

Hello Yvette – what a complicated and pressurised position you are in. While we can’t give you advice about a specific situation like this at Which?, I hope you will be able to find answers on the Which? Elderly Care website, which is free for anyone to use: http://www.which.co.uk/elderly-care. You could look specifically at ‘Accessing local authority and NHS care and support’ in the section ‘Your relative needs’.

Age UK and the Alzheimer’s Society also both have advice lines that are free for you to use. Go to these pages on their websites for further information:

Age UK: http://www.ageuk.org.uk/contact-us/
Alzheimer’s Society: http://www.alzheimers.org.uk/contactus

I hope you manage to find a way through this situation quickly.

Member
Agnes stevenson says:
3 October 2014

My mother in law was 96and we always said we would not put her in to care,but we had no choice as she started to go wondering out in the middle of the night,but we had great social workers !!!who helped us all the way to geting a place in a home near were we stayed,they sat with us and they went through all the good points and bad!!! We have only good memories of the whole project, my mother in law died in June this year ,but she was well taken care of by the home and social workers.My advice is not just accept what they say!!! Question them that is what they are there for,the well being of your loved one,and for the family concerned!!!they went through what was best for the family?my husband had a stroke ,and that was all taken into account.

Profile photo of Alex Toplis
Member

Hi Agnes, thank you for sharing your story. I’m sure your advice will come in very useful to other readers.

Member
Dottie says:
19 November 2014

My in-laws are in desperate need of care, but will not accept any help. Mother in – law has not left the house in over a year and now sits, sleeps, goes to the toilet ,( now incontinent) in one room of the house. She is no longer able to walk and refuses to use mobility aides which have been provided. Father in law has been caring for her, cooking, cleaning, washing etc, but no longer has the strength to manage. We are called out to pick her up when she falls or cannot be lifted off the commode ( now located in the living room). She has been taken to A&E after one particular fall, but was later discharged. We only found out by accident that she had been to A&E. The GP did a follow-up call and arranged for occupational health to visit for an assessment- an appointment which subsequently cancelled. She just sits in the chair and bullies people and shouts that she just wants die! We have suggested that home care be put into place to help alleviate some of the pressure, this has been refused. At what point, as children can we intervene?

Member
Agnes stevenson says:
19 November 2014

I don’t know what social care you have in England ??but in Scotland in the area I live in the Social services are great !!if there is no compromise with the elderly person they will bring in two doctors that are only for the elderly !! see what is best for the elderly person and for the family as a whole!!!it may take time but if the doctors think there is no compromise they with Social Service will take over what is best for the elderly person if it is care at home or in care they will decide!!! My husband and I had two social workers for us and they were great!!!they were only a phone call away!!my husband had a stroke and that was all taken in to account don’t!!!!be afraid to ask for help!!!and don’t let them put you of if you are at all concerned !!!hope this helps!!!

Member
Louisa says:
10 June 2015

From reading the comments it seems that the people who have had positive experiences live in Scotland. I can’t understand why care for the elderly was not more of an issue in the election, or why no government has sorted it out. I guess unless you are directly effected by this you don’t care. Getting a few pence off of tax seems an election winner, yet in England in 2015 people are just desperate getting no help, having to sell modest homes that they spent their whole life saving for. It is horrible for the person who needs care and for those trying to help them. I am finding it very stressful and am not sleeping now so this is not helping.

Member
Carly says:
7 April 2016

As far as I understand, people in Scotland are allocated around £1,500 more than people in the UK per head per year, hence they have more money to spend on things like transport/care etc… this is the Barnett Formula. Lots of people are calling for this to be reviewed.

Profile photo of duncan lucas
Member

Carly -healthcare in Scotland is a devolved issue and if the Scottish government wants to spend its money looking after the welfare of Scots instead of the welfare of privatization that is rapidly increasing in England ,so be it. Project Fear put out that the Scots were taking more out of the treasury than they were entitled to this turned out to be a lie as it was proved that the Scots actually put more in than they got out Westminster was dragged “shouting and screaming ” before they admitted it . It was all over the Scottish newspapers at the time as after the referendum the truth came out . After a battle recently Holyrood has stopped Westminster from reducing its payments to the Scottish government and the full facts can be obtained if required as they are pretty involved over various issues . Many people in Border areas actually go into a Scottish hospital for treatment as it is cheaper with no prescription charges etc .

Profile photo of Scottsmyth
Member

Hi all Adult SS froze mums bank account in May this year. Since then have only given £120 to live on. This was given in envlopes containing £60 on two occasions posted through my letterbox no signature required. Mum suffers from dementure and told SS she didn’t trust me. As there is only mum and I, I got the blame for all the unexplainable that was going on in mums life. I must add she was also drinking heavily when SS got involved. At no time when SS became involved with mum did they introduce themselves to me. I discovered them on a visit to mum, where they were talking about respite. Mums wishes are to see her days out and die in that house as she put her life into it.
Can someone tell me if I can take a private prosecution against the two ppl involved in mums abuse and deprivation of liberty and hold these ppl accountable for what that have done????
Ok for anyone who is interested, received a letter from Adult SS stating they are corporate appointee and will be applying to court of protection to take over mums affairs and property. Then to top it off I received a phone call from the older ppl team asking if I was still pulling out of mums care, I asked fir a manager to shed some light on the matter to be told that SS had rung them stating I was no longer able to care for mum. I am confused esp at the last statement that is some serious b******t. Well what do you think?

Profile photo of Lauren Deitz
Member

Hi there Scott smyth,

Thank you for your comment. Which? has a free advice site on elderly care which has lots of useful information and may be of some help to you in settling this matter: http://www.which.co.uk/elderly-care

Member
Carly says:
12 May 2016

I’ve been looking online to try and find out about care options for elderly people as it’s been incredibly difficult to actually find a solution for my Grandpa. From the looks of things, lots of people are having the same problem. I though I’d share some information I’ve found out during my research.

Instead of having to arrange a care home, or NHS carers (sometimes not available for the hours you need) or private care (more expensive with changing carers and varying quality) you can find newer social enterprises who are trying to “change the way we look at care”.

I found a social enterprise called SuperCarers (supercarers.com/carers-now) that help to find the best quality carers for families and individuals. The reason they attract the best quality carers is because – unlike private agencies – they don’t take a huge chunk of the payment we give them to pay for overheads and admin costs. This also means a lower cost for us too.

Also, we get the same carer every time, instead of being chopped and changed around because the agency doesn’t care that my Grandpa may have formed a friendship with a carer, if it makes more “monetary” or “logistical” sense to send another.

I think it was set up by two brothers who watched their mum care for their grandma, and found the same problems as many of the people on this thread.

Member
Carly says:
12 May 2016

oops, forgot to post the link! It’s http://try.supercarers.com/carers-now/ (what a wally!)