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Care & carers

What constitutes a carer?

(14 Posts)
CarrotTop Mon 31-Aug-26 15:40:04

Hello, I'm new here. Hope you don't mind me asking, but what exactly is a "carer"? Am I one? My DH is able to do most things but, due to head injury, is unable to do anything that requires much thinking about - house maintenance, taking care of everyday emergencies, driving, banking, etc. I've always been a pretty capable type and have gladly taken over all the stuff he can't do. It feels weird being Her In Charge because we've always had an equal relationship. But now my health isn't what it was, I really need to call in outsiders for some things. But where do I find trustworthy people who'll help? And what happens if I conk out and he's left alone? He won't even know how to pay the bills (and he really isn't teachable at this stage of the game) and as for feeding himself, he has two recipes in his repertoire and one of those is toast & sandwich spread. Please don't recommend Age UK. In our area they're fine if you're looking for a social day out or a carer's assessment (believe me, we don't qualify). But they're hopeless if you ask them to point you in the direction of a plumber, or someone who'll call in once a week to check that we're still alive (did I mention we have no family and, due to an ill-advised house move, no friends who live nearby?). Sorry, this is a rather long post - but if you're in a similar position ('im an' me against the world - well, me mostly), where do you find help in an emergency, and how do you find someone who'll notice if you're not around for a while? I'm so desperate, I'm thinking of joining the local church - but for an atheist that's rather a naughty move! I don't mind paying for help, within reason. Thanks for your attention, I've been a lurker for a while and have been impressed at how helpful many of you are with cries for help.

NotSpaghetti Mon 31-Aug-26 15:51:04

You could go to the church coffee mornings though...
People there will at least help point to reputable workmen/women.

Thinking of you.

62Granny Mon 31-Aug-26 15:54:32

You need to get on to your local council Social Services team , they should be able to tell you what services are available in your area and what you qualify for. In my area we have care & repair who will do some work free of charge or for bigger jobs they have a list of approved people. Information should be on your local council website. It doesn't sound as if you need day to day care but more "just in case " type information. There is plenty of help out there but knowing were to find it is the problem.

ToriaJane Mon 31-Aug-26 15:58:46

I’m a first time poster! I’m a ‘carer’ for my husband who has Alzheimer’s. My surgery has been very helpful. If you ask your GP for a Social Prescriber to visit you at home they should put you in touch with the support you are looking for. Good luck it does sound like you are a Carer!

MT62 Mon 31-Aug-26 16:00:04

Do you need help cleaning?
What about a cleaner that will go the extra mile? Rather than carers that don’t do that much in that area, imo.
That would free up some time maybe.

Cossy Mon 31-Aug-26 16:05:12

I’m with the others, look for some practical help iro cleaners.

Also contact your local council and ask de social services older people.

Are you claiming anything financially like attendance allowance?

Are there any local support groups, either in person or online, for supporting families where one person has a brain injury?

Good luck and please do let us know how you get on flowers

Cossy Mon 31-Aug-26 16:06:53

Also local libraries often have groups and things which might be of some help to you.

Primrose53 Mon 31-Aug-26 16:30:42

You are a carer! If you are getting a State Pension you are not able to claim Carers Allowance. If you are younger, you can. Your husband is entitled to Attendance Allowance though.

The going rate round here for a care worker through an agency (as confirmed by an older friend in the village) is £42 an hour. she needs 2 visits a day and says her money is disappearing fast so she is going to have a local, experienced person who charges £20-£25 per hour.

Someone mentioned Social Prescribers earlier. I believe they are now cutting back on these which is a great shame because we had a lady who came to the house and helped us do the Attendance Allowance forms. She was brilliant but our GP surgery no longer has her.

In my opinion a Carers Assessment is not worth the paper it’s written on.

Regarding tradesmen I would look on local sites, shop windows and ask neighbours who they recommend. Personal recommendation is always best.

You might like to try Carers UK for advice and support (on line).

Fallingstar Mon 31-Aug-26 16:40:20

www.headway.org.uk/

Try this support site for help with brain injuries. I had a very helpful conversation with them when my DH had a stroke and has since suffered with cognitive impairment. They can point you in the right direction with regard to any help or support you might need.
I think that there is also a forum where you can chat to others. I have joined a forum with the Stroke Association. Is good to talk to others about what you are going through and things that might help.
There might be groups meeting up near you where you could go with your husband and hopefully make friends. Would google this, but again a site like Headway could help.
Make sure you are registered with your GP as your husband’s carer - which is what you are - and this will be helpful if you want to try to claim Attendance Allowance. There is a lower and higher rate of AA, my DH qualifies for the higher rate because he is physically and cognitively disabled and needs help both during the day and at night. You need to be brutally honest on this form, don’t gloss over anything, spell it out in detail, and if you have any medical records/paperwork pertaining to your DHs condition send copies.
I wish you all the very best 💐

Sadgrandma Mon 31-Aug-26 17:01:55

Do contact your local council’s social services team. They are obliged to visit you to do an assessment of your husband’s needs. They must also assess you as his carer. If financially you don’t meet the criteria for free home care they will be able to advise you of your best options. If your husband is over 65 he should certainly qualify for Attendance Allowance which should go some way towards paying for the help he needs. . Unfortunately if you are also over pension age you will not qualify for carers’ allowance. Your local Citizens Advice bureau will be happy to help you to complete the required paperwork so do pay them a visit.
There is help out there. Good luck.

Graphite Mon 31-Aug-26 17:10:36

Aside from specific care for your husband which others have addressed, your situation breaks down into two main areas really:

Firstly, to some extent your situation is no different someone living alone who has to do everything around the house. The solution is the same. You have to pay to get someone in to do the things you can’t physically do yourself. Ask neighbours, look at shop noticeboards or use your local community Facebook pages to get recommendations. If you are a proactive person and it sounds like you are, do what I do. Look out for neighbours having work done, wander along and have a chat to the contractors and get a business card. Ask the neighbours afterwards if they would recommend. Over time, most of us here have graduated to using the same gas engineer, window cleaner and tree surgeon.

Secondly, help in an emergency, and how do you find someone who'll notice if you're not around for a while?

You need to speak to neighbours just as I have done. I am a widow with no family. I had a health scare last year and it was touch and go for a while. Fortunately, I was able to call the emergency services myself and here I am still. When I was released from hospital, neighbours were very kind in asking how they could help. I am not someone who likes being fussed over so I simply asked them to look out for me until I felt I was recovered, to make sure they saw my curtains were opened in the morning, that I’d put my bins out, whether parcels were taken in, whether they saw me coming and going, on foot or in my car - all signs that I am still alive (or not).

It’s not intrusive. If they feel concern, they would send a text message, ring or knock before using the emergency keys I have set aside. My neighbours know who my solicitors (executors and POA) and to call them in the worst case scenarios.

You say you have friends albeit not living close by. Set up a regular phone system with one or more. My late neighbour and her sister (both widows) used to take turns to call one another every day at a set time in the morning just to make sure each was alright. It was when my neighbour couldn’t get an answer from her sister that she called the emergency services who found she had collapsed. Another neighbour and I used to look out for her, calling round briefly each day to make sure she was alright.

I think many people assume that everyone has someone but the truth is that there are many of us who no longer do, or not anyone close at hand. I also think we can be shy of offering help for fear of being intrusive or being seen to be suggesting that someone isn't able to cope. My mantra is to offer or to ask.

In 2021, nor long after lockdown restrictions were lifted, a neighbour threw a party for a special birthday. I was deemed moderately vulnerable at the time so I declined politely. I was wise to do so. Almost every guest caught Covid. For two weeks I did a lot of shop runs for bread and milk and walked a lot of dogs! Paying it forward in a way but that's what good neighbours do.

Farmor15 Mon 31-Aug-26 18:05:53

Excellent post from Graphite and others. All practical suggestions.

M0nica Mon 31-Aug-26 18:44:17

Speak to your local branch of Age UK.every branch of Age Uk has a n information service. They provide a wide range of services to carers and their carees Including opportuniteis to socialise.

However your first port of call should be your local Social Services.

madeleine45 Mon 31-Aug-26 19:51:15

Hallo, you are a carer certainly, and you seem to be in that state of quiet panic, that happens when we realize how much is on our shoulders and that there are many situations that we can see could loom upon us, and we have not yet been able to form a plan of how to cope with it all.

So , if you have been reading any of my posts before, you will know that I am a great advocate of lists. Not lists that make things worse, but hopefully a start in finding ways to make things a little better.

I would suggest that the first thing you think about, is what do you enjoy yourself? So perhaps you used to be a walker , or a needlewoman or swimmer, or gardener. Your life has no doubt slowly meant that you have given up altogether or had little time to enjoy your hobby. So if you think what gives you pleasure and relaxation, then this is your first port of call.

Your library will have the up to date lists of clubs and groups that will be a good contact for you to start, to find like minded people where you can try out and find what appeals to you. This might sound as though I am starting from the wrong end. But I think that to cope with all you are having to deal with, it is quite important that you have at least one small amount of time to be you, doing what you enjoy, and allows you to relax for that short time. On difficult days, you will be able at least to say to yourself , never mind it is x club tomorrow.

That puts you in touch with kindred spirits and you will slowly get to know them more, can make new friends , all of which will help you to cope with life as it is. If they are local people who have lived there a long time, they will be just the people to know reputable tradespeople and can let you know if they have actually used them before. I would suggest that you have a small notebook and then whenever anyone mentions someone good or bad, you write them down and their email or phone no, so that in the future, should you need them in a hurry , you have your local list to help you.

On that score, you could start to have a a notebook at home, that you write the same things down. Also I think that buying the local paper is worth the money. It is something I organise as soon as I move somewhere, in fact if I know in advance I arrange to have copies sent to me for a month or so . You will see all sorts of information, from open gardens , coffee mornings, warnings of road closures etc. It will be a mine of information for you , until you start to get your own knowledge up to date.

Then I think you will find there will be a way to make contact with a carers group, and I think there is often a head injury group which might be helpful, and you may find others who have ideas that can help you. Do you both swim? At my local pool they have a session for disabled people and their carers once a week. They have all sorts of floating aids etc., and it can be very useful in several ways. Something that you can both share still, again an opportunity to meet many others in a similar situation, and there will be those who will have been down a similar road and can save you time and effort by telling you of any useful tips, places to get help, and even if it is the negative , it will save you wasting your time.

Dont let anything stop your little pleasure, and see it actually as an important help to manage all you have to cope with. See it as the tonic you need to keep going. So if you can afford it , also can you look around and find someone who could come and spend a regular time with your husband.? If you can find someone that suits you both, then in the beginning , it will allow you to go out and do shopping and things , and perhaps they would either be a person who might be able to do little mending jobs, or do a bit in the garden with your husband. You would be paying them for spending the time there, so you might get a bit more done, and if you find them trustworthy, it will then be that peace of mind that you have a contact at least who might either be able to help or tell you where you might find someone reliable. You would also know that in an emergency they already know your husband and will know what heneeds etc.

I moved abroad and travelled quite a bit, and whilst I was reasonably intelligent and able to figure things out, when my son was only a toddler I was living in Damascus, and I was so uptight, because I couldnt read arabic and felt very vunerable, in case there was some accident or illness and I needed a doctor or a hospital. So I was able to get someone to write out in arabic, various sentences with the translation, so that I could have got a taxi, contacted the police , rung my husband at work etc. It is the same for you now. That sense that for no fault of your husband or you, you find yourself feeling responsible for so much, and havent yet got those reassuring thoughts such as I can always go across the road etc.

You will find your way, and it will get a bit easier but will take time. Joining the bowling or gardening club or going dancing, is a way for you both to adjust, find things that you can still enjoy as a couple, and the more you settle in , the better things will become.

On more practical ideas I would get one of those key locks , that you can put up in a shed or whatever. Then you will have a spare key that is safe, you usually have a 4digit number to put in to open the box, and that way if you lost your key, or had been out shopping and your husband had managed to lock himself in, you would be able to get it quickly. Try to find simple ways to get to know your neighbours. Just chatting in the garden, or offering to collect a paper for them.
Then you could offer to hold a key for them and they hold yours, for emergencies.

In the meantime, can you arrange to keep in touch with your friends from your last home.? If you could then arrange to ring or text them say once a fortnight or whatever you think works for you. Arrange that if you dont phone on that day, they leave you for a day, but if you havent rung then they will ring you etc. Also I suggest that if you have medication, that you keep a copy of your prescription in your bag, with your address easily seen. Highly unlikely you will need it but it is another thing which will help you to feel calm. If you feel your husband might not be able to remember his address or anything, it can be worth just having a printed note of his name, address and phone number, which you put in a coat pocket. This is not meant to make him feel upset about this, but more to help you to have less stress in the unlikely scenario that he is out and is very late.

I hope you will find something helpful here and not think that I am going on too much. You have done the right thing in joining us on GN. There will be someone who will be able to help you and have good ideas. On nights that you are struggling to sleep or are worried about something there will be someone awake on here and you dont feel as though you are the only person wide awake in the world. Welcome to the group and wishing you all the best