Commentary: 'Spinning plates, sandwiched and or mystified?'

A letter to a friend when her parent's health is in decline. (updated with 2024/5 rates)

Today I thought I'd share a letter to my friend 'Hon' in her mid-40s. She lives in England with her husband, David, and daughter Liza. Hon is an amazing lady who leads a commercial team at work. Whilst we're close enough to unpack our real feelings with each other, we rarely get quality, in-person time these days, given our respective responsibilities. So, being journal-people, we made a pact to write.

Recently, we managed to have a brief catch-up call, and I've been worried...

If you have other helpful, constructive and empathetic thoughts for 'Hon', please leave them in the comments.

This situation does not represent everyone, but I hope it resonates at some level.

I believe everyone needs this kind of friendly advice!

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Hey Hon,

I'm sorry I've been so late getting back to you. You always say you don't want an apology, because you understand what our care routine is like, but all the same, I'm sorry. You sounded more overwhelmed than usual when we talked a week ago, with work, Liza and now, all this about your parents’ health. I mean thank G for David! Aside from being a great cook, it sounds like you guys are tag-teaming and talking - you have a good'un there!

I started this email to you as soon as we were off the phone - honest! During our call, I promised I'd give you more information on being a carer, caring and the whole assessments thing. You know I feel strongly about trying to help you, and anyone else who's starting to look after their parents, it's just the whole email morphed into a dark rabbit hole, listing facts. Regurgitating a whole slew of information in a tsunami is not exactly what you need right now! I think I've revised this email at least 4 times, and then paused and put it aside because it also made me realise how this must be exactly how it is for everyone! I remember feeling overwhelmed back in 2015 when Dad was first hospitalised. There are some great organisations and experts out there but 'What does it all MEAN to me and for our situation?'. A little depressing but hey, if you're finally reading this I've at least managed to find a way to articulate some recommendations, advice and information to you!! Even if it's a tad delayed!

You said, you've noticed that your Dad seems a bit more confused lately and your Mum's knee is playing up, right? I think I remember you saying that your Mum is 78 years old and your Dad will turn 80 next year, right? The thing that struck me the most when we were talking was that you sounded more worried than usual. Especially when you were talking about your Mum being more unstable around the house and how she said, she'd had 'a small fall' on the stairs. I wanted to hear more about THAT little incident because we both know how your Mum hates fuss, and if she confessed it to you then... but your little Liza started screaming and you had to go, and I only just heard 'can you tell me what I'm meant to do now? What did you do?...I mean do we really think they'll get an assessment thing done, and will they even be eligible... I should be doing more, right??? we're already juggling loads and I just got that big project at work.....ahhhh Liza!!!!'. Click.

Good thing we're used to abrupt ends to our calls!

I think I stared into space for a few solid minutes after our call. Just sat and thought...huh? Hon, love you but you do realise you've been doing the 'Carer thing' for a while now, already. From what you've told me you've been doing more and more over the last year! I remember when we managed to FaceTime around your 45th birthday, you told me how frustrated you were trying to show your Dad how to use online banking (painful) and then you couldn't bear trying to sort your Mum out with the Tesco shopping app too, so you did it for her. Ummm you're still sorting the shopping deliveries out, right? See? You're already helping them with some everyday essentials! Welcome to the unpaid Carer club. Before you say, you're not a Carer again (I can hear you saying 'But I'm not like you I can't resign from working!). Just because I chose to resign from work, and I'm looking after Mum full time is NOT the definition of a Carer or an unpaid Carer. You're a Carer because you're providing support to someone who needs it.

I don't like the term 'unpaid Carer' anyway. I had to check the government and NHS websites because I knew you'd ask me what it means:

The government legislation definition:

“Carer” means an adult who provides or intends to provide care for another adult (an “adult needing care”); but see subsections (9) and (10).

(9) An adult is not to be regarded as a carer if the adult provides or intends to provide care—

(a) under or by virtue of a contract, or

(b) as voluntary work.

(10) But in a case where the local authority considers that the relationship between the adult needing care and the adult providing or intending to provide care is such that it would be appropriate for the latter to be regarded as a carer, that adult is to be regarded as such (and subsection (9)is therefore to be ignored in that case).

The NHS England definition

A carer is anyone, including children and adults who looks after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support. The care they give is unpaid.

You'll already realise this means we are defined as 'Caring for free' a separate category from anyone who is paid by an employer - be that the government or a private agency or charity. Let's not dwell on definitions right now, I wanted you to understand that, by these definitions, you're already caring for your parents, and since you're not getting paid to do that, you're literally like me; an unpaid Carer AND you’re working.

Can you print, copy and put these contact details for Carers UK into your phone?

There is a huge amount of information on Carers UK website but you don’t have the time to click through everything, right now, with the kids and everything. Take it from me, once you start it'll feel like an encyclopaedia of things you need to understand! Ok, we both know you'll start clicking through the site, but be warned there's a LOT there.

The best thing is that Carers UK has a helpline you can call in addition to the ‘Carers Connect’ online forum (where you sign up and have an anonymous username - so you can freely vent and soundboard!). You can get 'the real lowdown' from other Carers. Keep these details for when you need more advice. They know so much more than me and tailor information as needed!

Carers UK Helpline service is available Monday to Friday, 9am-6pm on 0808 808 7777 (including bank holidays, with the exception of Easter Monday). Alternatively, you can contact our Helpline service by emailing advice@carersuk.org at any time.

They offer advice on:

• benefits and financial support

• your rights as a carer in the workplace

• carers' assessments and how to get support in your caring role

• services available to carers and the people you care for

• how to complain effectively and challenge decisions.

There is another organisation called mobilise

They provide similar easy-to-understand guides and a forum too. Mobilise don't offer advice but they work closely with Local Authorities and Carer Support Organisations across the UK. So, if you're interested you could sign up and see what help is available in your area.

'Our enhanced services with our partners also include free support calls and coaching programmes with our carer support team. Enhanced services are offered where we have been commissioned by your local council, NHS trust or carer support service. '

Spinning plates and demystifying assessments

You said to me - 'can you tell me what I'm meant to do now? What did you do?...I mean do we really think they'll get an assessment thing done, and will they even be eligible... I should be doing more, right??? we're already juggling loads and I just got that big project at work.'

I could hear the stress in your voice and I hope your flippant remark 'I should be doing more, right?' was only a flicker of fear due to stress, right now, and that you're not running around judging yourself?! I hear you. I'm running right alongside you, Hon. Please don't be unkind to yourself or worse, don't be like 'you-know-who', who's trying to look all perfect and is all show - she has worries too, even if she won't admit it. We deserve more than that kind of judgment. You have so many spinning plates on the go right now. You're awesome, but you're only human! I'm doing my written pep-talk because amidst all this stress you've forgotten to be kind and compassionate, to yourself! Remember 'should' is a swear word. Even when your parents are only 30 minutes down the road here in England, that still doesn't mean you have to do everything for them. In my humble opinion, you, David and your parents all have some choices, decisions and plans that need to be discussed - and let's not forget David's parents in all this too!

That said, eyes wide open, let's do a bit of grounding.

1. From what you've told me about your parents, I think each of them has a share of savings and capital that's over £23'250. No need to answer. Just remember that number.

2. I know you and David are doing pretty well with your jobs, especially with landing that new project (Congrats again Hon, a great step-up!) so you're both working full-time and Liza will be going to 'big school' as she calls it, soon (geez time flies).

3. It's unlikely that your parents need your support heavily right now, right? You've mentioned a bit about your Dad and Mum's health but, has the doctor formally diagnosed them with something or do they have physical disabilities, or need specific help in their daily routine? These are all questions and assumptions you need to ponder on, Hon.

4. Also, how much support, in hours, are you giving your parents? Is it 35 hours or more a week? If that’s happening, we need to schedule a bigger chat because I would be really worried about how you're still standing AND I'd want us to work on how to get you help for them immediately!

This is just me to you, asking a few questions, not a formal assessment or criteria from somewhere. You don't need to share all the details with me. I'm just arming you with some key thoughts for you and David to anchor to and explore, for yourselves. Carers UK can provide tailored information.

Bottom lining things here, in December 2023 (things may change next year with the next budget and imminent general election!):

• The place where Mum and I started was getting Dad Attendance Allowance: it helps with extra costs if one of your parents has a disability severe enough that they need someone to help look after them e.g. your Mum looking after your Dad or vice versa. It’s paid at 2 different rates and how much they get depends on the level of care that they need because of their disability. It does not cover mobility needs. It is NOT dependent on their income or capital. (This probably doesn't apply but they could get extra Pension Credit, Housing Benefit or Council Tax Reduction if they get Attendance Allowance). They do not have to have someone caring for them in order to claim for Attendance allowance. They could get £72.65 or £108.55 a week to help with personal support if they're both:

  • physically or mentally disabled

  • State Pension age or older

• If you were earning less than £151 per week and caring for your parents for 35 hours or more a week you could be entitled to Carer’s Allowance . £81.90 per week. This doesn’t apply to you but good to be aware of it. Your parents are unlikely to be eligible for Carers allowance. I know that both your parents are retired, and have a healthy state pension, so neither of them is eligible to claim Carers allowance.

  If you get State Pension:

  • You cannot get the full amount of both Carer’s Allowance and your State Pension at the same time.

  • If your pension is £81.90 a week or more, you will not get a Carer’s Allowance payment.

  • If your pension is less than £81.90 a week, you’ll get a Carer’s Allowance payment to make up the difference.

• Then there's a Needs assessment. This is a sticky part. On one hand. your parents are likely to need the assessment to understand what their needs are e.g. if they become less mobile and need more help at home. However, from what I understand this is part of the local council social care system which they can charge for. It's 'means tested' which means a financial assessment is carried out. First of all the needs are assessed, a judgement is made by the local council if the needs of your parents are 'eligible', and then they decide if these 'eligible needs' are already being met in some way, and then they assess financial capability. If your parent is over the £23'250 threshold, your parent would pay the council to organise their care support

FYI 'If the eligible needs of the person you care for are already being met in some way, the local council do not have to meet these particular needs, but they should still be recorded in the care and support plan. As a carer, you are entitled to be involved in this process if the person you care for agrees. The local council cannot lawfully assume that you will continue to meet the person’s needs. Therefore, it is important for you to be clear about the level of care you are willing and able to provide.' (Carers UK)

I'm guessing you can see how investing time in getting a needs assessment can easily lead to one parent being deemed capable of looking after the other parent. The council can decide they don't need to do anything. If it's evident that the parent in need, has more than £23'250 to their name and, unless your parent or you, say that you are not willing or able to provide care support, it will be assumed that you/your parent will provide the care. So, thinking about your willingness and ability to provide care is important. Consider a situation where your Mum wants to look after your Dad, is she physically capable of doing that, and for how long? Sorry, Hon, I’m not trying to push or scare you but these are the kinds of difficult questions that are good to think about now before a hospitalisation happens. You know the stress we were under and what happened to us.

These are the bare bones of what I know, and what you need to discuss with David. I recommend checking with the Carers UK helpline when you’ve your questions sorted.

Knowing what you've told me in the past about your Mum, it's the passing comment that she made about the 'small fall' that's niggling around in your mind, right? Are you worrying over different scenarios and 'what ifs?' Do what we do - write them down, so you can get those hypotheticals out of your brain and down on paper. Then you and David can discuss them, and start thinking of what you can and can't do. It'll help you frame the situation better for yourself AND your parents

You know how hard 2015 to 2017 was for us. The nightmare hospitalisation Dad had in 2015 knocked us hard, and then a diagnosis of vascular dementia and then bladder cancer in quick succession. We got an attendance allowance for Mum looking after Dad. She was not eligible for Carers Allowance, I was working full time initially and didn't even apply. I did my assessment of local agencies which could supply in-home, support and I organised a few hours of support directly with these companies. We realised quite quickly that these agencies were the same ones being used by the local council because these were the only available resources in the area. Our situation progressed and changed unpredictably including a couple of operations so we didn't actually do a needs assessment and then I resigned in 2017. We made things work between Mum and me, with some minimal agency support and the Hospice at Home charity.

Some lovely people are well-intentioned and offered and discussed and spent a few hours with Mum, myself or both of us. In the end, they simply couldn't deliver. Towards the end with Dad, even with the amazing local hospice, they were so stretched with their overnight service, that we couldn't predict if or when they could come until they called us at 3 pm that same day. We were so grateful for their support though, and accepted whatever they could give just to get some sleep.

Coming back again to your question: 'can you tell me what I'm meant to do now? What did you do?’

Have a read through all the information I've shared. The most likely 'thing' your parents may be able to get is an Attendance allowance but right now do you even want to go there straight away?

Here are 4 key things I’d recommend focusing on":

1. Before your parents have a critical need, identify what's available locally. As I mentioned in some parts of England NHS, council-social care and private services for care support are the same agencies. I google searched agencies and reviewed each of them on the Care Quality Commission website. Never assume anything, call and ask about their workloads and teams. The majority of the time, their volume of clients is high, and the number of staff is low. What happens when someone is sick? What kind of tasks, and things can they do?

2. Simultaneously, Be brave and start having THAT awkward difficult conversation with your parents. With an open heart and mind, talk to them about their wishes. You have a great relationship with your parents but this isn't something you can checklist, push, demand. AND try not to rush the conversation. Express your worries and heartfelt concerns. The key is to start a dialogue before a crisis happens,  and slowly build alignment. Emotions like denial, fear and even anger are testimony to how sensitive and awkward this subject can be. Some of the most meaningful conversations can be the hardest. I've heard other friends talk about parents trying to 'prove a point about being able to do something'. Remember when you were a teenager and your parents 'eye-roll' was so annoying? Try to give the conversation space and even silence so that your parents open up to you. Badgering, and pushing didn't work for us, so it won't work in reverse! Maybe start with the parent who's the pragmatist and planner first. (Lasting Powers of Attorney is another topic worth getting ahead of. However, if you’re just starting the conversation with your parents, start with small topics first. I’ve heard conversations misfire into money arguments and miscommunications)

3. Try to start thinking, planning and getting ready to help them in the approach that can work for you - eyes wide open. It's not the big existential questions that matter at first, it's the small everyday activities: shopping, deliveries, a lightbulb change, a leaky pipe. Like I said, I think you're already involved quite a lot. Do you or they call every day? Maybe it's time to set a time slot that's good for them AND you. Be mindful of taking on more caring responsibilities, before you've had the chance to have an open discussion set your boundaries, and align on how to manage their wishes and needs AND YOURS. Eyes wide open, try to start project managing a village network of support - identify who can help, when and for what. Write their names and contact details onto a list by the phone! Including all the doctor’s names.

4. Prepare yourself for an intentional choice and its implications. What's right for you and David and Liza? If you keep aligning and planning with your parents you will save some heartache and stress later.  The 'Sandwich generation' is a well-known concept. Define what's right for you, and be ready for hard choices, is my advice. We've not talked a lot about this but there was a lot of personal hygiene, showering etc I did for Dad, including helping him go to the toilet and helping him with the catheter when he was in hospital. I believe that we each deserve to be able to choose if you can/want to provide care for our loved one, and exactly what kind of care. The trouble is that the lack of available services, and support and the complex system often means that people feel 'defeated- into’ providing the care themselves.

Last but NOT least, in fact, the piece I’m most concerned about…you personally!

That's a ton of information I've shared. I think what worries me the most right now for you, is that you've got this new big project on your plate on top of everything else. It feels a little like a perfect storm could be brewing. I'm not telling you to give up this project, I think you've worked hard to lead it. I do think it could be worth spending some quality time recalibrating your time so you can be mindfully present, in the moment with whatever you choose to be doing at that specific moment time. For example, pull in your talented team so they can do more and show off their talents, create space in your calendar to just think, have a time for just you and David and Liza, and keep your Date Night with David! I know you, and you need all those things, in addition to knowing your parents are ok. Figuring out what 'caring for your parents' looks like; your definition of being an unpaid Carer, including how you can best manage your time and mental capacity is so important hon! (FYI A Carers Leave Act will come into effect in 2024, something worth bookmarking)

Being human means being perfectly imperfect. We’re not going to make everything okay, perfect or easy for our parents or ourselves. Life is a challenge, so we can only keep going and trying!

You know I'm saying all this with love, empathy and a lot of protectionist loyalty to make sure you're ok!

Contrary to what some people think, there are no easy solutions. There are no readily available support services everywhere in England to support your parents. So, draw on whatever resources you can find. You're not alone in all this! I can share more, Carers UK Helpline is there and mobilise.

When you've read all this, please take a breath.

Email me! Big empathetic hugs

Useful links for advice, info and ideas

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