Navigating the care maze

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attendance allowance, carer support, caring, caring for the elderly, self-employment, Work/life balance, working from home

This is the third (and final!) instalment in my series of posts on caring for elderly relatives while attempting to carry on working. I make no claim to provide an exhaustive list of what’s on offer, but thought it might be useful to jot down some of the tips I’ve learned over the past few years. These points apply solely to England, of course, but it may be that similar arrangements apply in other parts of the UK. And some of my notes are more general so may apply to other countries as well. Please do add your own tips in the comments as different people have different needs and I’m sure many things have slipped beneath my radar as it really is a maze. Here goes!

It may seem obvious, but one of the most important things is to try and get a diagnosis as soon as possible. We failed miserably in this as the NHS persisted in diagnosing my father’s condition as ‘low mood’, even though we felt it was something much more. Covid didn’t help, of course, but after 18 months of no progress and my father’s condition worsening, we eventually sought a private assessment – which confirmed that he has dementia, as we had suspected for some time. The problem is that the standard dementia screening tests are just that: screening. People with high IQs may be able to pass them with flying colours, but that doesn’t necessarily mean they can function normally in other ways. Dad’s assessment came too late to help my parents, and particularly my poor mum, who had to cope on her own for much of the past two years. Had we had a diagnosis, we would have been able to tap into much more support locally, from dementia daycare centres, to carers’ support networks, to organisations like TuVida. Without a diagnosis, we were effectively barred from this support – frustrating to say the least! General mental health problems were simply not covered. You shouldn’t have to pay to get a diagnosis, but we really did try very hard – and my daughter-in-law is a clinical psychologist! It just felt as though we were banging our heads against a brick wall, which is probably a reflection of the perilous state of mental healthcare in this country. All I can advise you to do is keep on trying!

Make sure you register with your parents’/relatives’ GPs or health professionals so they can speak to you about their patients. You will probably need to do this in writing, with a letter signed by your relatives, or an email may suffice. You are also entitled, by law, to request copies of medical records if you wish to seek private advice – bear in mind this can be a long process and you may need to chase and hassle! Ask to attend appointments with your relatives; if these are online, as they often are these days, you may well need to be on hand anyway to cope with the technological side of Zoom. You may consider asking if you can record discussions with doctors, but I found hospital doctors were reluctant to allow this – always worth checking though.

While on the subject of hospitals, I feel it is worth noting that, Covid or no Covid, there are certain things that we, as patients and relatives, are entitled to. They should not discharge patients from hospital without a care plan. So when my mum was discharged from hospital after 5 days, against our better judgement, and without any care being put in place at home, they were completely out of order. I know that beds are in short supply (even before Omicron reared its ugly head), but discharging an elderly lady when they hadn’t diagnosed what was wrong with her, she wasn’t eating or drinking, was in considerable pain and could barely walk was quite simply negligence of the highest order. We tried to protest, but they weren’t having any of it. I’d only just managed to get my father into respite care that morning (nobody thought to ask how she’d cope if she, as a carrer herself, came home to someone needing full-time care!). Despite this, I had a series of missed calls on my phone from the hospital asking why no one had picked her up, even though I’d already said I couldn’t get there until after I’d dropped off my father at noon. Warning bells rang for me when she needed a wheelchair to get from the discharge ward to the car, parked right outside, and the journey home down country roads was a nightmare for her, even though I drove extremely carefully. Needless to say, I spent much of that afternoon trying to find out why she’d been discharged and to get her readmitted, but my calls to the GP (twice), 111 (positively rude) and the ward doctor who’d discharged her proved fruitless. We’d been issued a liver diet sheet (lots of creamy food at frequent intervals to build her up), but I couldn’t get her to have more than a mouthful of tea….

Fortunately, we’d had a stairlift fitted for my father the week before this all kicked off, so I was able to get her up to bed, but I don’t think either of us had a good night’s sleep. The next morning she was worse, so we eventually managed to get her readmitted late that afternoon by dint of seeking the advice of medical friends, calling 999 and talking to a very helpful paramedic, who sent an ambulance, but then she had to go through the whole triage process again. It beggars belief that she had to endure such unnecessary agonies in the last few weeks of her life. This is apparently known as a ‘failed discharge‘ – you can say that again. I shall be submitting a formal complaint, but I simply haven’t had the time or energy thus far.

Once she was back in hospital, we found it impossible to speak to the doctors to find out what was going on. The nurses didn’t seem to know (or weren’t allowed to say), so we became increasingly frustrated. We could see she was going downhill, but nobody was talking to us, despite frequent requests on our part. In the end, I contacted another friend who had worked in a senior role in public health until her retirement and asked for her advice. She suggested I call and ask to speak to the hospital matron at 08.45 in the morning. Result! Would you believe a doctor called me back later that morning and explained the situation. It may not have changed the final outcome, but we, and the patient, have a right to know what’s going on. Matron even popped in to see me and Mum later that afternoon and called me in person when it looked as though Mum was declining towards the end. I’m very grateful – but you shouldn’t need to go to the top to get results. I should add, as I’ve said before, that the nurses were wonderful with Mum once she’d been readmitted and I can’t fault the care they gave her right up to the end. It’s just such a shame she, and we, had to go through extra anguish at this time, but I’m sure we’re not the only ones over the past two years…

Back to care in general: there are many charitable organisations out there offering a lot of information and advice about mental health/dementia and caring for the elderly across the board: Age UK is one I found particularly useful. They have a great website and local teams who are usually happy to talk to you. When I called them initially last spring, I ended up leaving my details and they took 4-6 weeks to get back to me, but they were extremely helpful when we finally spoke. By this time, I’d found out a lot of the information from other sources, but it was good to go through the various options again. The Alzheimer’s Society is another one and your local council should also have lots of information about social care and carer support. Of course, the problem with much of the support on offer, particularly carer support, is that it requires the carers themselves to ask for help – something people of my parents’ generation are often too proud to do.

One thing I felt I could do for my parents back in the spring was try and organise a home help for my mum. Mum was perfectly capable of keeping her house immaculate, even at 86, but was struggling with the heavy stuff and the increasing demands from my father, who didn’t even like her pottering around the garden without him. They already had lovely local gardeners who came in every week and did all the heavy gardening tasks like mowing and hedge cutting, but my mum still loved to do the deadheading and fine pruning. They didn’t need nursing or personal care as such, so I looked up local cleaning agencies and joined the Facebook group in my parents’ village to ask for recommendations. That proved to be a wise move as I’ve been able to use it for all sorts of things further down the line, such as sourcing house clearance companies and carpet cleaners for the house. I’d also been referred to the Age UK Home Help Service, a paid-for service offering just what we needed: housework, running errands, companionship, although they do also prepare meals, collect prescriptions, etc. They use experienced, security-checked and trained cleaners and charge a reasonable fee (I think it was £11 an hour when I spoke to them last year, but they do charge a service fee for the year as well (£175 last year). They also can’t guarantee that you will always get the same person. In the meantime, I’d had results from my Facebook search and found a delightful local lady, who had been trained by Age UK initially but had subsequently set up her own home help business. She was a treasure, despite initial mistrust from my father, and took the pressure off my mum over what was to be, had we known it, her last few months. Ironically, we were just about to increase her hours when Mum went into hospital.

When Dad came out of hospital last May, we had the local mental health crisis team visit us at home when he was discharged and they advised us of the various allowances you can claim from the government to assist with care responsibilities. There are two main ones: carer’s allowance, which is means-tested, and attendance allowance, which isn’t. Unfortunately, the forms they sent us were the wrong ones, so we had quite a delay and assumed we weren’t eligible at all until I discussed the situation with a friend, who confirmed that they should have sent us the other form. Sigh. The patient needs to have needed care for at least 6 months before you can claim, so because Dad had seemed fine until the end of February last year, we agreed to leave it until September – by which time we’d been overtaken by events. I eventually claimed in December. One useful tip I gleaned from my conversation with Age UK was that if you call and ask them to send a form out to you (rather than completing it online), any claim will be backdated to the date of your call (as long as you complete it and return within 6 weeks) rather than the date of receipt of the completed form. This could mean up to 6 weeks’ additional allowance, so well worth doing. The form itself is a nightmare to complete, full of detailed personal questions, so brace yourself! And be armed with your relatives’ prescriptions, medical history, sequence of events. etc. How on earth elderly people would be expected to complete it themselves, I really don’t know…

The Blue Badge form to access disabled parking spots is another tricky form to complete, but again worth doing if you are prepared to grit your teeth and soldier on! My father had had a blue badge a few years ago after a knee replacement operation but had been turned down when it came up for renewal as he was too proud to admit to the doctor how little he could walk – and refused to allow us to apply for him for the same reason. I eventually did the claim this summer and what a relief all round! Stubbornness is all very well, but sometimes you just have to override them in everyone’s best interests.

Moving on to more practical matters, if it seems likely that you’re going to need to help with relatives’ finances, etc, make sure you have powers of attorney in place well before you need them. My parents had done theirs back in 2004, so they were the old-style enduring powers of attorney, which are still valid today. If you need to make them from scratch nowadays, there are two types: one for finance and property and one for health and welfare. My parents had made theirs well in advance of them being needed, but we finally decided to register my father’s last May when it became apparent he was starting to lose capacity. It needs to be registered with the Office of the Public Guardian and there is a fee to register. This can be a lengthy process: the government website currently says this can take up to 20 weeks, although ours took much less. Once the document has been validated by the OPG, the PoA then needs to be registered with each individual financial institution, utility company, etc. – another long and arduous process. It shouldn’t be as difficult as I’ve found it, but I’ve experienced such incompetence across the board – banks, share dealing services, government departments – that it has taken me months to sort everything out and I’m still waiting for refunds for things like my parents’ TV licence.

Make sure you have certified copies of the power of attorney too, as many institutions will ask you to send it off, along with certified copies of your ID (passport, driving licence, etc.) in some cases. They should return them promptly, even if they don’t action your request straightaway, but this doesn’t always apply – and you really don’t want to run the risk of losing original documents! Be careful who you ask to certify copies too: my solicitor (in the next town) charged a very reasonable fee to certify a number of documents in one go, but when I checked with a local notary first, he suggested a fee 15 times higher! I decided that an 18-mile round trip was probably worth my while….

If you are at the stage of encouraging relatives to set up powers of attorney, or wills for that matter, do ask them to think about who they appoint. My parents had both appointed each other and then me, as the elder daughter. I don’t think any of us expected my mum to pass away first, though. In retrospect, it would have made much more sense to appoint another younger power of attorney as well, so at least there would have been two of us who could have shared the arduous task of registering the powers! If they own their own house, check whether they hold it as joint tenants or tenants in common: this can affect who one share of the property goes to when one individual passes away, no matter what it says in their will.

When you register a death, you can ask (and pay) for multiple copies of the death certificate at that time. Again, it can be useful to have more than one copy for when you’re sending notifications off to organisations who need to know, although the government’s Tell Us Once scheme is a brilliant timesaver. The registrar issues you with a one-off code that you can use to log on to the service and this then notifies most government departments in one go: state pensions, HMRC, the local Council, DVLA, Passport Office, etc. I tried to go into banks in person to notify them of my mum’s death and lodge the EPoA for my father, but this may not be possible if you don’t have local branches or you’re dealing with other organisations spread across the country. That way, you don’t need to let those important documents out of your possession, although this doesn’t necessarily mean the process will run any more smoothly. NatWest, in particular, managed not to copy my EPoA correctly when I took it in, which caused no end of problems. I despair…. Some companies, but not all, will accept a pdf version. Others want your inside leg measurement – I jest, of course, but they might as well! Then there are the requests for original paper (not online) utility bills and bank statements dated within the past three months – who, in these environmentally-conscious days, gets paper bills and statements any more?! In actual fact, I do still receive my council tax and a statement from one of my banks through the post for precisely this reason – but how can this still be a requirement? Rant over…

One final tip I wasn’t aware of before: I realised that my father would be eligible for a single-person discount on his council tax when my mother passed away, but I was pleasantly surprised to hear that he was eligible for a full exemption as he’d moved into a residential care home. The council were very efficient and processed his refund within a matter of days.

The elephant in the room, of course, is the cost of care. This is a minefield and I’m not qualified to go into much detail here. All I will add is that, at the moment, in England, if you have savings of more than £23,250 or own your own property, you are responsible for your own care – self-funding. This is set to change in October 2023, but hasn’t been ratified by the House of Lords yet, as far as I’m aware. According to the new plans, the cost of social care, for both new entrants to the care system and existing patients, will be capped at £86,000, but this won’t include daily living costs in care homes. At anything from £700 to well over £1,500 a week, care home fees amount to a considerable sum of money, an added concern for anyone in this situation. Even care in your own home doesn’t come cheap and the same qualifying rules apply.

As I’ve suggested in my previous post, caring is never easy – and when you factor in all the admin and legal aspects as well, it can be positively all-consuming. One step at a time is all you can hope to achieve – and keep ticking off those boxes. I feel I’m finally getting somewhere, many months down the road. We’ve decided to let out my father’s house for the time being, so that’s been another adventure, but, fingers crossed, it’s all going ahead very soon. I can feel a well-earned holiday coming on before too long…

Do add any other useful tips in the comments – I know I’ve barely scratched the surface, but I do hope my tale of woe will be useful to someone at some point.