Today I’m at the Carers Bucks AGM, finding out more about what Carers Bucks do. And to add extra excitement (for me at least), I’m speaking too. I’m cock a hoop to be meeting other local carers, care workers and policy makers.
Here’s the agenda in case you’re interested.
I’m aiming to bring to life some of the pressures on working carers and also to share the main things I’ve learned that keep Marj and I sane and well. I’m also expecting to be inspired and humbled by meeting the young carers and looking forward to understanding more about how Carers Bucks supports them too.
If you give support or care to an elder relative and you have discovered Maud&Mum at the AGM, WELCOME! I do hope you join us, whether on facebook or twitter (@maudandmum) or by signing up to blog posts (there are no more than two per month). You can join up at the bottom of this (or any) page.
If you work in an organisation that supports carers and their elders in Oxon/Bucks, I’d love to promote you (FREE), so do get in touch if you are interested.
I’d also love a chat, so do come and say hello.
I’ll post some pics from today and share what I learned from the AGM in my next post.
While the gateway to older adult social support in different local authorities (LA’s) varies across the UK, the older adult’s GP is the only gateway to all health services, whatever your LA.
If you are starting to take on a little caring responsibility, even if it’s ‘just’ popping in from time to time, it’s likely that your elder will welcome you joining them for any GP appointments. If your elder cannot travel to the surgery easily, it’s a good idea to arrange a GP appointment on behalf of your elder, perhaps a double appointment (20mins) and for you to go. Explain your relationship to the GP (take the health LPA with you if you have one) and share your elder’s health status, health concerns, current or future treatment and ask for the GP’s opinion and about potentially useful local health services too.
When you see your elder’s GP, ask about your elder’s:
current health issues, their treatment or management and whether a review is due (all adults over 40yrs are entitled to an annual health check at their GP surgery).
recent blood tests and what they revealed. Consider arranging a blood test if there has not been one recently. Are there any easily treatable vitamin or mineral deficiencies that can impact older people, eg B12, D, Iron.
repeat prescriptions and how they are reordered (by phone or online) and whether a home delivery service can be set up to make things easier. I am currently investigating whether my GP will support the pharmacy2u service to save me a monthly trip to the surgery. Once drugs are prescribed, it is very important they are taken consistently, at the right time every day, for them to be effective. Discuss this with the GP as you may need to investigate appropriate medicine dispensers and/or reminders.
continence support. Marj saved £85 a month which she put towards her home care by accessing the local continence service through her GP. Every 3 months I ring the local adult community healthcare team to say we still need pants and then three months’ supply of pants are delivered free of charge. Let me tell you, that’s a lot of pants (270 to be exact), you are going to need to find storage. People living with dementia qualify for this service, but other conditions may qualify too. The great thing about Bucks is that Marj can have the brand she prefers rather than the NHS ‘standard issue’ which is not so comfortable I’ve heard (I’ve not seen them though). Check whether your elder can choose the brand too or trial a variety for fit and functionality. Simply choosing a larger size made things a lot more comfortable and secure for us. Before we discovered and accessed the continence service (incidentally, years after Marj needed and was eligible for it), we ordered 6 packs for the price of 5 every month from Boots.
access to social care support (occupational therapist assessment, care at home or moving to a care home) if likely to be needed in the short term. While GP’s aren’t responsible for social care, the GP is likely to have some useful local knowledge and there are signs of increasing, though patchy, collaboration (yaye).
If you are already concerned about your elder’s health or behaviour for some reason, arrange to take a urine sample to the GP on behalf of the elder as it’s likely you will be asked for one and this will save you a return trip. You can take the sample in any clean, labelled, sealed vessel and pick up a couple of sample pots when you at the GP’s for next time. Urinary Tract Infections (UTIs) are a too common cause of a wide range of distressing symptoms for older people and can even mimic dementia symptoms too.
And for goodness sake, please do let your own GP practise know that you are a carer. GP surgeries hold a carers register and increasingly they are organising to support carers better (some are more advanced in this area than others). At the very least you’ll be eligible for free flu jabs, for example, to help keep you on your feet in winter.
Marj and I share a GP which is very helpful in many ways, but that’s likely to be unusual nowadays with families tending to be scattered geographically. If you do live close or with your elder, then do consider using the same GP. When our GP has popped out to see Marj at our home, she has also been able to give me a quick consultation too (both kind and time saving).
Here’s a naughty but handy tip, please don’t let on I told you. One winter, years ago now when Marj and other family members were constantly getting really sick (and I don’t mean just heavy colds), I booked GP appointments in advance, every two weeks. Whoever needed the appointment went to it, which did surprise the GP I have to say, though they kindly agreed to continue with the consultation anyway. Of course if no one needed the appointment, I cancelled it as early as possible to free it up for someone else. This a last resort and is only for extreme circumstances as I’m sure the GP practise would have rumbled me if I’d done this for too long.
It’s a really really good idea to keep your GP and their surgery team ‘on side’, you never know when you’ll need a favour. I’d advise nurturing a good relationship with them, being reasonable and never taking the mick.
Bigger support from NHS continuing healthcare
If your elder qualifies for NHS ‘continuing care’ then their care is fully paid for by the NHS. That means that unlike social care, their assets and income are not taken into account nor are they used to fund the care they receive. It goes without saying that this ‘free care’ is a very attractive option for families.
An older adult can receive NHS continuing healthcare in any setting (in their own home or a care home). Here is the AVDC (Aylesbury Vale District Council) position on it. While it is free of charge, I hear application isn’t straightforward and it’s very hard to get. Consent is needed from the patient or whomever holds power of attorney, there is a national screening continuing care checklist and then there is a full eligibility assessment using the ‘Decision Support Tool’ (?) which is often carried out by a health professional. Nevertheless, please don’t be put off.
When an elder needs care and support for a healthcare need, the theory is that this is paid for by the NHS, which is why it isn’t means tested (healthcare still being free at ‘point of delivery’ in the UK). The elder is first screened to see if they’re eligible for an assessment. Their care needs have to be primarily due to poor health and this is measured in terms of:
Its nature [the type of condition or treatment required (quality and quantity)].
Its complexity (symptoms that interact, hard to manage/control)
Its intensity (one or more health needs, so severe they require regular intervention)
Its unpredictability (unexpected changes in condition that are difficult to manage and present a risk to self or others).
So, for example, help with washing and dressing is a social need not a healthcare need. It’s not about the diagnosis but about the manageability of the condition. It may also not be a permanent ‘benefit’ to be relied upon, and could be withdrawn at any time, which has drawn criticism.
If you think your elder may be eligible, your first step is to discuss it with your GP. Apply sooner rather than later as I hear it is a lengthy process. Be tenacious.
In an excerpt from The Sunday Times 25/3/18, the NHS comes in for criticism about not raising the profile of ‘continuing healthcare’ more and the complexity involved in applying for it. Here is the article…
Mental health support eg dementia
Thank goodness the stigma around mental health is being slowly chipped away. Please ask for help if an elder’s behaviours are changing rapidly, they should be supported by their local mental health team. Responsibility for chronic brain diseases like dementia is held under older adult mental health services (not by the older adult social care service).
You cannot self-refer for mental health support, you can only be referred by your GP. The Oxford Health Foundation Trust (OHFT) manage the Community Mental Health Team across both Oxon and Bucks. Here is the detail from AVDC. After a GP referral, your elder may be assigned a care coordinator.
Your elder may also be referred to a ‘memory clinic’ from which chronic brain diseases are diagnosed and managed, at least initially. Marj went to the memory clinic at Stoke Mandeville, this is what the OHFT says about their memory service. Expect your elder to undergo some verbal and written tests, which of course is worrisome, so you’ll need to accompany and provide reassurance. If the tester is skilled and sensitive, this need not be too onerous. Drugs or a CT scan may or may not be prescribed as a consequence. Ask about the likely impact of any drugs prescribed and their side effects and discuss these before taking them. If the side effects turn out to be too distressing (we are all affected differently by drugs), then do ask about alternatives. Your elder is usually then discharged back into the care of the GP, until their condition becomes unmanageable, if at all.
In Bucks, an elder can self-refer to ‘Healthy Minds’ which is a free cognitive behavioural therapy (CBT) and counselling service, which is very helpful for many people. Do consider that.
Bucks Mind provides older adult counselling services too.
And lastly, do be openminded about antidepressants, they can be beneficial for some people.
Lastly, whatever health support your elder needs, you are going to increasingly need to be their advocate. When it comes to keeping your elder well, your opinion is as important as any health professionals and should be taken into consideration.
Our elders may give health professionals, especially those in authority, a little too much deference and not speak up even when they have a concern. Try to take the time to understand any worries before a medical consultation (even if it’s in the car on the way there). Your advocacy is even more important during a hospital admission.
If you live far from the elder you care for, do a google search for organisations that can provide advocacy for your elder. I met the awesome Barbara, CEO of a fantastic Bucks charity Voices and Choices earlier this year who recruits and trains volunteers to provide this support for local people.
(Bucks Carers also have a carers lounge in Stoke Mandeville hospital to support carers.)
Good luck in keeping well.
PS, if are under any impression I am a qualified medical professional, I am not. Please always seek your GPs advice.
Arguably, LPAs (both ‘financial’ and ‘health’) are a good idea for any adults who are mutually dependant on each other. For anyone with a chronic brain disease like dementia, LPAs are an important personal safeguard. However they are equally important for any couple, especially those who enjoy extreme sports, where one may suffer a temporary incapacity.
An LPA ensures that should a person become mentally incapacitated temporarily or permanently, a trusted partner, family member or friend can step in to act in their best interests (health, financial or both).
You may not be aware that without an LPA, spouses or blood relatives will NOT necessarily have a say over a loved one’s finances or health should they not be able to make their own decisions. Even if they share a bank account, which could be frozen. Worryingly, without an LPA, accountants and lawyers are likely to step in and make the decisions instead. Contesting this involves a lengthier rigmarole, an expensive application to the Court of Protection of £400 plus and potentially a lawyer – do try to avoid this route.
I’ve helped Marj complete her LPAs and I can tell you they are lot simpler than they may seem, as long as you take you approach them methodically.
There is no legal need to involve a third party like a solicitor either (who will likely charge you £400-£1,000), but do make sure you understand the options fully and do seek help if you need it – always understand what you are signing.
Jargon wise, the adult seeking to give LPA to another is called the ‘donor’. The person / people asked to step in when required are called ‘attorneys’. The independent third party who witnesses the drawing up of the LPA, to ensure that the donor has the capacity to do so, is called a ‘certificate provider’.
In essence, all you need is:
to decide whether you want to set up one LPA or both (health and/or financial).
to decide who the attorneys should be.
the name, address, email (optional) and date of birth of both the donor and their attorneys.
a certificate provider (and their name and address). The certificate provider must be over 18, have read the LPA and have known the donor for over two years (or have relevant professional skills or experience). The certificate provider must NOT be a family/extended family member or employer or business partner or an attorney or an owner/manager/director/employee of a care home where the ‘donor’ lives.
to decide whether you want the attorneys to operate ‘jointly’ (that is, do everything jointly, including possibly co-signing cheques and care decisions, which can be inconvenient if attorneys are geographically separated) or severally (that is, one attorney can act or make decisions independently of another). If you decide to act severally, I’d still encourage open consultation between attorneys.
decide when and where you are all going to get together to sign it. This is because the signatories of the LPAs need to sign and witness in the right order for it to be valid. I have heard stories from fellow carers who tried many times to get this right and failed, sometimes because the donor would not accept that it was important. To be honest, it did my head in, so I would make it simple for everyone. Arrange for everyone to be in the same room at the same time, on the same day. That way, everyone can sign at the same time. Heck, I’d even recommend an LPA ‘party’ or meal together.
find £82 for each LPA application (less if you earn less than £12,000 a year or receive certain income support).
If you haven’t set up an LPA for health and/or finance yet, do consider it before the adult you care for loses mental capacity. It isn’t possible past this point.
Drafting one or both LPAs may well seem like an awful milestone in a cruel illness, but in actual fact LPAs are as important as wills for all of us with partners and families, of and at any age.
I’d thoroughly recommend applying for an LPA online. If you do it ‘old school’ by printing it off and completing by hand, you are likely to 1) use the wrong colour ink (like I did) and have to start again (argh) and/or 2) get repetitive strain from filling out the same tedious info (names and addresses for goodness sakes) over and over again. The other bonus to applying online is that after completing one LPA, with one click you can request that the details you have just entered be copied over from the first LPA to the other. This is a fantastic time saver, unfortunately one I missed until it was too late (double aargh)!
You can do it.
So, are you ready? For (much more) detail on what both LPAs cover and how to apply for them, click here.
One last thing, be sure to compete LPA applications accurately, sign in the right order and be totally sure about what you are signing. This is because LPA amendments have an admin fee, as well as taking more time. Your local Carer support organisations will be able to support you if you need help.
[If you happen to be reading this article after already registering an LPA (dear Lord, why?), you may as well check whether you made your application between 1 April 2013 and 31 March 2017. If you did, your donor may be eligible for an LPA refund. In which case, ‘go you’ for reading this after all, it got the donor around £35 back!]
Have a great Easter bank holiday weekend everybody.
You need a Care Plan when you start needing to explain to other people, family members or otherwise, how to support your elder parent, spouse or friend. If other family members kindly offer help while you are at work or looking after the kids, it saves you having to explain what to do, where to find what they need and the changing preferences of the person needing extra care.
A Care Plan is essential when the older adult is vulnerable and unable to look after themselves without a lot of support from you and/or anyone else. If you are the primary carer, should you break an arm ice skating and be taken to A&E, you will need the reassurance of knowing that whoever steps in to give emergency care to your elder will know what to do.
What is in a Care Plan?
In the beginning the Care Plan will be very short and light on information, maybe just a page long, especially if you don’t need care workers. When Marj first came to live with us, she was able to walk between houses, stroll to the pub or visit the supermarket with help, prepare her own meals and drinks etc. The Care Plan was limited to the phone numbers to contact us on while we were at work and other critical things like medicine dosages.
Slowly, over the years, Marj came to need our help more and more. So slowly over the years, her Care Plan has lengthened as it details how her individual quality of life is sustained and what her individual preferences are.
Throughout her residence with us, Marj has directed how she would prefer to be supported and spend her day. Only occasionally have nudges from independent experts been needed, to help ‘transition’ to helpful new practises that support her wish to live on her own (e.g. use of specialist ‘moving and handling’ equipment).
How do you write a Care Plan?
The Care Plan is your own guide, so can be in any format. I just googled ‘Care Plan’ and can’t find a non-medical version at first glance (feel free to send one to me if you’ve got a good one), so I’ve attached the format I’ve used below. I made it up in the way back and have added to it over the years. It’s done the job and our care workers have found it helpful. In any case, if you use a Domiciliary Care Agency, they will certainly ask you for a Care Plan or help in drafting one.
I have listed everything you may possibly need to detail, but of course delete anything that is not relevant to you. The red copy is for guidance and should be deleted when you’re ready. Feel free to adjust anything else – it is now YOURS.
A Care Plan is particularly effective when used with a Care ‘Log Book’. Click here to go to my blog post #3 for other help in getting organised and saving time.
If all this sounds lacking in heart, it’s because the Care Plan is a reference document for everyone, including professionals. If you are a family member then of course you will want to add a dollop of love.
For example, as time has ticked by, while Marj’s ‘needs have been met’ (as the professionals would say), Marj has found less and less reason to laugh. However, I am proud to say I can guarantee at least one daily giggle. When I check Marj last thing, I wrap my arms around her, snuggle into her neck and kiss her muchly and noisily. That always gets a peal of laughter and a kiss and a hug back. It’s not in the Care Plan but it’s important to us.
Happy Mother’s Day to my mum, to Marj and to all other mums,
I’d like to (try to) explain how important it is to engage early on with social services, how you do it and what to expect. Warning – this post is long, but it is important (and it’s much shorter than the ‘official’ bumpf). I’ll explain how it works in Bucks so you will need to double check for your county, but in the meantime take a tea break and curl up on a sofa with this for 10 mins.
Local authority ‘older adult social care’ (previously known to us as ‘social services’ back in the day)
Like I was, you may be wary of ‘calling the social services’, in case it all ends with ‘the wrong’ outcome. Please think again. True, there has been a lot of media exposure about what needs to change, however in my experience, I find the support very helpful once you have found it, applied for it and it’s been (eventually) delivered. It won’t surprise you to know that the social care services are very stretched so they prioritise based on need. Having said that, my advice is to make yourself known earlier rather than later. Don’t wait for an emergency, like a fall resulting in a break, to get on their radar. By that time you’ll likely be frazzled and over stretched.
Your local authority (LA), i.e. the entity that collects your council tax (see your council tax bill for your LA), has a duty of care to support people with care needs and their carers. If you pay council tax to a district council that is affiliated to a county council, then it is the county council that is accountable for care provisoin. For example, Aylesbury Vale District Council (AVDC) collects our council tax, but it is Bucks County Council that supports Marj with care. Click on AVDC’s website for an explanation of national funding.
In the past, eligibility for adult social care ‘packages’ may have been different across different LAs. Since the 2014 Care Act, the criteria for eligibility should be the same across counties e.g. Oxon and Bucks. Adults over 18 qualify for support from Adult Social Care if they have needs that arise from or related to a mental or physical impairment. It doesn’t matter how the impairment came to be. If an adult is unable to achieve at least two ‘specified outcomes’ (e.g. prepare food or wash and dress) that are deemed to have a significant impact on the adult’s wellbeing (e.g. spend time with family, stay connected to their community, health impact) they are usually eligible. The specified outcomes are listed here,see section 13.5-13.7 p17 of the 30 page (yes 30 pages) Bucks County Council ‘Assessing and Supporting Your Needs’ policy document. Of course it means well, but is rather hard work.
For the older adult that needs support
First up, the ‘care needs assessment’
The adult who needs support needs a ‘care needs assessment’. Everyone is entitled to this assessment and it does not involve income at this stage i.e. ‘means’ testing. An assessor evaluates i) what the adult can do on their own, ii) what help they need, then iii) help they already have. If you are the unpaid carer, sit in on the appointment as you may need to take the role of advocate. It is not unusual for an older adult to say they are managing fine when actually they are not, we all have our pride. Also, please be really clear about how much you can and can’t help. Your own wellbeing and your other important activities e.g. a full or part time job, childcare etc. are very important too so don’t try and be a superwoman or superman. If the adult needing support does meet the eligibility criteria but can’t afford to pay for care themselves privately, then the financial assessment is next.
A ‘financial assessment’ is next if care ‘in home’ is to be funded by the LA
All social care is means tested (except for social support for carers). So, the adult who needs care will need to divulge their regular income (pensions, benefits or earnings) and capital (cash savings, investments, land and property, including overseas property and business assets). Depending on personal finances, the LA will decide whether to contribute fully or in part to care (using a sliding scale) or not at all. Here are the current financial limits:
If the adult has capital/savings over £23,250, it is straightforward, they will pay the full cost of care and are called a ‘self funder’.
If an adult has capital/savings between £14,250 and £23,250, they are expected to pay £1 per week for care for every £250 they have above £14,250.
If an adult has capital/savings less than £14,250, their contribution is assessed on income only (their capital/savings are disregarded).
As capital/savings reduces as a result of funding or contributing to care, the adult’s contribution to care also decreases.
If the adult has a very high pension, they are very likely to have to pay a higher contribution to care.
For care support carried out in your home, your house isn’t taken into account, just your income and savings.
Residential or Nursing Home care
A financial assessment and means testing is applied here too, as you will likely have heard due to increasing media coverage.
If the adult has capital/savings over £23,250, they are normally expected to pay the full cost of care (and are called a ‘self-funder’). However, if an adult self-funds care, they will still be eligible for attendance allowance (see post 4).
If an older adult owns or has an interest in more than one property, it is very likely their capital assets will be over £23,250.
If the older adult is the sole occupier of their home, the house counts towards capital*. The home may only be disregarded as an asset if it is also occupied by a partner or a former partner who is a single parent or a relative aged 60yrs+ or a disabled younger relative or a dependent child under 18yrs.
Income (including benefits and pensions) is also assessed.
However, some income is disregarded (e.g. mobility allowance).
If the LA contributes to the older adult’s care, their Attendance Allowance may be affected (you are expected to declare to the DWP that you are receiving a contribution to your care).
*The 2014 Care Act led to the introduction of the ‘deferred payment scheme’ which aims to help people stay in their own home as long as possible (rather than having to sell their house prematurely to pay for care fees). In a deferred payment scheme the LA uses the future proceeds of the occupied house’s sale (at any point up to or after death) to offset or cover care costs. This is a type of loan agreement, not necessarily open to all, to which interest and admin charges apply. Terms probably vary from LA to LA. LAs want to keep people in their own home as long as possible as it is cheaper for them than moving someone into residential care, but please do your research before agreeing to a deferred payment scheme. They may not be the best option for everyone and it’s worth getting some independent financial advice from a trusted source (try Which? or the Citizen’s Advice Bureau for options).
Funding residential care is a complex topic and you should seek further advice in any case from your Adult Social Care team and an independent support group. (e.g. Age UK, Alzheimer’s UK, Carers UK).
The ‘Personal Budget’
If an older adult is eligible for financial support towards their care, they will be given a ‘Personal Budget’. There are two options to managing it:
Your LA, e.g. Bucks County Council manage the Personal Budget on your behalf and, for example, use the domiciliary carers they have contracted with, or
The older adult takes the Personal Budget as a direct payment and uses it to employ a carer or assistant, pay a care agency or pay people in their family to provide care**. This way the person who comes into the home to perform the care is the choice of the older adult. The direct payment can be also be managed through a nominated family member or POhWER if necessary.
**Intriguingly and potentially frustrating for many I’m sure, you cannot pay the family members you live with to look after you. I wonder why. If you could pay family members you live with to care for you, might that encourage more multigenerational households? The benefits could include freeing up underutilised housing, relying less on residential homes (a lower cost for the public purse), reducing social isolation and potentially reducing NHS costs due to a positive impact on wellbeing. (according to research which shows a correlation between isolation, mental and physical health).
What other LA supported care is available?
For Bucks residents, Bucks Older Adult Social Care is the gateway to the following help:
Community Occupational Therapist (OT) assessment and loan of assistive equipment for the home (Marj is a big customer, see post 8)
The LA carer’s assessment
Like the care needs assessment, everyone is eligible for a carers assessment. If there is no care or social worker already coming in to help your elder, do look at this. A ‘carers assessment’ is when the LA evaluates the impact of caring on the carers life. I recommend getting help with filling in any self assessment forms. There are eligibility criteria, but it is NOT means tested (no one looks at your finances or benefits). However, help isn’t likely to be financial, though a ‘one off’ carers direct payment, towards a break, is sometimes forthcoming.
If you need some respite (a break from your caring role for a few hours, overnight or longer), your LA is also the gateway to this support.
A ‘sitting service’ as part of a LA adult social care ‘care package’ may be possible (though not available for ‘self funders’). Unfortunately I have heard that this sitting service is no longer available for Bucks residents, but it might be available in your LA.
Go to post 4 for more information on Carer’s Allowance which is a completely different thing (I know, it IS a bit confusing).
How to contact your LA
If you live in Bucks, contact Bucks Older Adult Social Care through the ‘Community Response and Re-ablement team’ (CR&R) on 01296 383204 or on their website. This team (with a confusingly different name) should be able to point you in the right direction. Set aside some time as it might take a few calls, you may go around in circles a bit, but DON’T GIVE UP.
The first thing the team may ask you to do is to complete a self-assessment on their website. This will be used to prioritise your case. You may like to get some help with this, from a carers support group. In any case, keep a copy of any self-assessments as you are likely to be asked the same questions over again during a phone call and in any follow up meetings (very tedious, but they aim to prevent unnecessary public expenditure).
There will be similar support from other county LA’s too, but it’s worth looking them up or asking your local carer support groups to point you in the right direction, as care provision is often organised and managed differently county to county.
There is a lot of other support out there if you have the time to look for it. Try charity, support or volunteer organisations like Carers Bucks and Carers UK, Age UK, Alzheimer’s Society or Action on Hearing Loss. They sometimes have contracts with the LA for giving help. For example, Carers Bucks have an emergency fund for cases of extreme stress or family crisis, which they can deploy if a carer breaks a leg and is struggling to make a cheese sandwich.
Smaller local social clubs, charities and groups can also be great support, do you know of any?
It’s worth noting that currently (and maddeningly), an LA’s health care teams and social care teams are unable to talk to each other easily. So, if you live in Bucks, social care is provided by Bucks County Council and health related care is always accessed through the GP (whichever county your elder’s GP is in).
In post number 13, I outline the potential additional (and free) help available from health services.
If your elder has the means and would rather not rely on adult social care, there are an increasing number of private enterprises who can help you. I’ll cover these options in more detail in a future blog post. But don’t rule out the very real support and help you gain from joining a carers group (‘real’ or on social media).
Finally, while this post attempts to accurately summarise the complex routes to accessing public funded social care, it is no substitute for speaking to the experts at your LA. They will have the final say.
I’d like to highlight what I think is one of the most important parts of a ‘care plan’: the bit that attempts to convey a little of the life history, passions, interests and preferences of the person being cared for. That way, helpers don’t just see an ‘old person’; they see the individual.
Lately, I’ve been wondering how to record more of Marj’s life so that her family and those who support her know a bit more about her. We know some stories between us, but not all, I’m sure.
Years ago, I bought Marj a journal which, page by page, prompts her to think about and record her thoughts and experiences. However, she either didn’t get around to it or didn’t want to. To be honest, I have failed to prioritise my own journaling ambitions, so I can understand.
I rediscovered the journal recently in a cupboard and I wondered if I could use it differently.
Around the same time, I found a research paper* that suggested that a daily 10 minute chat improves the quality of life for people living with dementia. This makes sense, since loneliness is also widely reported as detrimental to both mental and physical health. However, sometimes what to talk about can be a challenge. It struck me that asking Marj a question a day could be a great way of engaging and reminiscing. I could note down her thoughts on the journal pages too.
While I was mulling this over, by chance I met Roy Moëd at an event organised by mutual work acquaintances. He introduced me to his company LifeBook. He was palpably excited, because some earlier radio interviews were generating interest in the company. Roy talked about the amazing work that LifeBook is doing, and that motivated me to get cracking on my own project. He also offered the following advice: after asking about a particular time, ask how it felt too. This was to be a perceptive insight.
The next day, as Marj and I chatted over a hot chocolate and a DIY home manicure, I asked her the first question, about her life as a young girl, how she felt then and looking back. I can tell you that things were tough for her and many others in the Potteries in the ’30s and ’40s. Marj is happy that those days are behind her.
From now on, every day that Marj is inclined towards a longer chat, I’ll ask her about a facet of her life. I think we are in for some interesting conversations, all of which I’ll be recording in the journal.
When my boat comes in, I’ll be commissioning LifeBook. Take a look; it’s a great idea, especially for those whose whole life has not been lived and recorded on social media. A wonderful, love-filled gift.
PS, No payment or value contribution was received from LifeBook for this post.
*Author Prof Clive Ballard, University of Exeter, published in PLOS Medicine Journal, 6 Feb 2018. Article title ‘Impact of person-centred care training and person-centred activities on quality of life, agitation, and antipsychotic use in people with dementia living in nursing homes: a cluster-randomised controlled trial’. This was a nine month trial across care homes in south London, north London and Buckinghamshire. Click here for full details.
Hospital bed (don’t let the kids on it, too fun!).
The discovery of targeted, older person living and mobility equipment has been transformational in helping us keep Marj supported at home. We have either bought kit for Marj or have mostly and gratefully had it loaned to her.
Knowing about mobility aids and where to get them helps older adults maintain their independence, dignity, activity and wellbeing longer AND protects their carers from strain or injury. I’m going to reveal the equipment we have valued over the years, in case it can help you too.
Marj brought her own walking stick with her. This is an accessory with which you can express your personality, so go crazy (I love opera canes and crocodile handles myself). Make sure it is the right height though, otherwise it is only good for gesticulating.
The first ‘enablement’ equipment was hastily bought and fitted grab rails to help steady Marj on slippery floors in her bathroom.
Then swiftly afterwards we installed a Saga pendant alarm so that Marj could call us when we were not close by. We have made full use of this! There are more and more ‘telecare’ products coming onto the market and being provided by Local Authorities (LAs) too.
The third thing we bought was a wheel chair. That was back in the day, before I realised that the height of the seat is as important as width, so do check height. It’s a bit hard for Marj to get in and out of as it’s a bit high and she is petite, but we get by.
The Buckinghamshire Wheelchair Service which provides custom wheelchairs seemed overwhelmed and our need was urgent so I bought one on eBay. If you need a wheelchair for indoor use and want to try the Bucks Wheelchair Service, you will need a referral through your Bucks GP. The Bucks Wheelchair Service can be contacted on 01494 734046 too.
Oxfordshire has a similar service if you are registered with an Oxon GP.
Buckinghamshire County Council (our LA) Social Services sent an Occupational Therapist (OT) round to assess Marj who then loaned her a walking frame to help her get up and down from a seated position and to walk across the room. Marj’s first frame had a caddy to help Marj move cups of tea and meals (this was returned when she no longer needed it). This is a picture of her most recent frame.
Then the OT loaned us a ‘perching stool’ which helped Marj rest while making a cup of tea in the kitchen. It was returned as Marj got less mobile and I came to use it more than Marj! Loaned sofa ‘raisers’ help Marj get on and off her (too low) but favourite sofa more easily. Because of the higher sofa when seated, Marj needs a height adjustable step, to stop her legs swinging mid-air.
A loaned wheeled, adjustable height commode ensures the loo is the right height for Marj too and doubles up as a versatile shower chair in a tight space. The commode ‘bowl’ is repurposed for hand washing since the basin is now awkward for Marj to reach.
On creative repurposing, this old Ikea bought step is lightweight and easy to move around in the tight space of a bathroom (important if you are to protect your back). It helps Marj push herself back on the commode.
Loaned equipment for Marj’s bed, including a back rest and mattress elevator (which was then again compensated for by yet another adjustable step), was eventually replaced by a hospital bed with washable mattress. The hospital bed is awesome in its useful maneuverability. Getting Marj in and out of bed and positioned comfortably without strain is a massive help and hugely appreciated. It immediately eased Marj’s legs which often ached at night too.
A loaned slippy satin base sheet (shown on the bed above) allows Marj to use her legs to push herself up the bed when getting in. This is both time liberating and cost reducing because only one person is needed to help Marj in and out of bed now (doubling up on people is expensive if you are self funding and need the support of professional care workers). The satin sheet helps carers and care workers look after their back and is great exercise for Marj’s legs. We had used a slip sheet previously, but with only moderate success. In better trained hands I’ve seen them work well though.
We bought a cantilevered table from amazon which makes it easier for Marj to eat on the sofa, more practical now than the tray she used previously.
As Marj’s standing strength faded, we tried a loaned rota stand, but Marj didn’t feel secure and refused to use it. Fair enough. This was eventually replaced by the most recent bit of kit loaned to Marj – the ‘Sarah Stedy stand and transfer aid’. After the commode and hospital bed, this is the second most awesome bit of kit. It has made ‘moving and handling’ or ‘transfers’ as the care profession say (can’t help noticing how this language also applies to the carriage of luggage) much easier. I should say that Marj didn’t take to it immediately as it is rather intimidating at first, but she is now very happy using it. I’m going to shoot a video of it in use to show you how amazing it is. I’ll insert a link here asap and alert you when it’s up.
As you’ll have noticed, the majority of our equipment is on loan. In Buckinghamshire, the gateway into this support service is through Older Adult Social Services. You will likely need to complete and submit a self-assessment first (or every 3 months or so as self assessments do go out of date). Your GP or District Nurse may be able to help you if your need is urgent. Older Adult Social Services can also be reached on 01296 383204. Bear in mind that there is a very long waiting list for an OT referral, so don’t leave it late. If you would like to investigate this service, visit the same Care Advice Buckinghamshire website for up to date information and guidance.
Once your Social Services application has been cleared as eligible, an OT will be assigned to your ‘case’. An OT is a professional who helps people carry out everyday activities that are essential for health and wellbeing. The OT visits and assesses the older person to see how they manage (or not) with everyday activities in their home. Prepare for your elder to suddenly appear as able and fit as a flea. Quite impressive actually. For this reason, take the OT aside before the assessment, or better still, be there to clarify anything.
The OT then writes a report which recommends proportionate, helpful equipment and once approved, in Bucks, NRS is contracted to supply and deliver the equipment.
Why is this service provided? LAs are realising that investing more of the budget in supporting older people at home is of far lower cost in the long run than rehousing the same people in residential homes (I estimate it’s around a quarter of the cost).
Companies like NRS contract to supply living and mobility equipment to LAs based on product functionality and price (they tend to be the more basic items as you’d expect). These aids are loaned by Social Services OTs via NRS delivery to eligible users. When you no longer need the aids, NRS collect them for refurbishment and reuse.
If you have the means, are not eligible for Social Services support or simply cannot wait, NRS also retail over 3,000 product lines to people who either do not qualify for social support or would like a product with more function or style. We certainly don’t become less interested in style just because we’re older. Marj always asks me to return any new clothes that make her look old. Living and mobility aids could do with a zhuzh in the style stakes – so come on product designers and innovators!
Impressed by their helpfulness to me through the Bucks Social Services (they also service Marj’s hospital bed), I tried out the NRS website recently. I particularly liked their ‘search by room’ website search function which revealed new aids that I didn’t know about before. You can find NRS and other branded products on amazon too of course.
The NRS Safe and Well programme is an interesting new service from NRS for those who cannot or would rather not wait to see a Social Services OT (wait times can be long). Through this programme, you can buy a ‘Private’ OT visit for £99. The Private OT visits you, identifies the equipment you need and writes a report which you can use to source aids privately. The NRS Safe and Well service helpfully recommends local stores you can try and buy the aids from too. The Private OT will also be able to identify whether you may be eligible for Social Services support or not, but you would have to apply to Social Services and be seen again by their OT to confirm this. Because it’s a new service that is still bedding in, it currently varies in availability across the country. However the good news is that it is available in Bucks, so do have a look at it. The very helpful NRS team tell me the website will be updated and improved soon too.
I hope this helps identify the right equipment to support you and your elder.
If you already have experience, what living and mobility equipment have you found most helpful? Please do let us know.
(No payment or value contribution was received from NRS for this post.)
PS, We’ve learned the hard way and from others how important it is to think carefully before any big private investment in ‘living aid’ kit eg stair lifts and digital hearing aids. Thinking they would improve on her NHS provided hearing aids, we helped Marj buy new £3,000 hearing aids. They were so small and fiddly, one was lost and never to be recovered, within a week. What helped Marj’s hearing in the end, we were to discover, was a long overdue ear syringing, a visit to the NHS audiology department at Stoke Mandeville for a new hearing test, new ear moulds and tweaked hearing aids. It took a while, but did do the trick very effectively and free of charge.
Perhaps your older friend/parent/parents have started needing a bit more support. Perhaps you are nearby so you can pop in from time to time. What happens when it’s clear that ‘popping in’ isn’t enough anymore?
I’m relaying the decision part of our ‘moving story’, not because it will be particularly helpful to you in itself, as every situation is different, but because we did learn an important lesson that was to help us from then on in.
About 9-10 years ago, Marj’s son and daughter had a sense of something not being quite right. Marj started finding herself flat out on the pavement with an unnerving frequency, not knowing how she had fallen and needing passers by to help stand up. Even though Marj didn’t break anything, it was very worrying. She also, ever so gradually started doing things out of character. For her daughter, the clincher was the discovery of furry corned beef in the fridge, something that Marj would never have tolerated before.
Marj had lived in the Potteries all her life and was surrounded by helpful neighbours and her sister who lived in Stoke too, but it was clear that they could not look after her in the long term. But Marj was set against moving out of her house, full stop.
Her daughter researched retirement communities near her but Marj would neither consider nor visit them. A second alternative was suggested, where Marj sold up and moved into her son’s house while an extension was built adjacent to give her her own space.
Marj was determined to manage and resolved to stay put while her worried kids gently tried various conversations over a year or so. In the end it took a new approach. Instead of focusing on the reasons why Marj couldn’t stay where she was, they shifted focus to the real choices available to her. They helped Marj list her ‘fors’ and ‘againsts’ for each option and let her choose.
Marj chose to move in with her son. The clinchers were threefold; more of an input into her surroundings and what she did with her time, living with people she already knew (and not being ‘forced’ to socialise with those she didn’t) and being able to see more of her grandkids. The whole process from raising the subject to moving house took about 18 months. We can all of course relate to why she’d pick the option that gave her the most control over her new life.
This was a big learning point for us. And a little embarrassing that we didn’t realise before. Why, just because we have grown older, would we ourselves make such a massive change without seeing a benefit and feeling like we had a choice or any control? I’d be pretty hacked off too.
Ever since, to acknowledge Marj as an individual, we offer her a choice, even if it’s only for a small or routine thing. For example, Marj may prefer to sit on the sofa, but we know she will be more comfortable if she uses the loo at lunchtime. So rather than asking if she would like to go to the loo (answer yes, or more likely no), we ask whether she’d like to go to the loo before or after lunch. That way, she always has control, even if not going to the loo is what she might prefer at that moment when we are free to take her.
It is heartening to hear about increasing ‘self directed care’ in some residential homes. I believe most of us would resist the idea of having to get up, bathe, eat and participate in group activities at exactly the same time as everyone else just because it’s expediant or efficient for the staff. How much better would it be to choose to lie in a bit one day or picnic on the lawn from time to time. As we age we don’t suddenly transform into a homogeneous group of ‘oldies’ suddenly happy to be lumped together and slotted into a routine.
Of course, being able to accommodate an individual’s choice in a residential home means addressing the costs and margins of care provision, which is another topic. But I do believe that even small self directed adjustments to the care timetable would improve resident and staff wellbeing.
For all the big and small decisions in your elder’s life, try offering the realistic options open to them, and dignify them with the final say. That way we recognise and respect our elders as the individuals they are.
Postscript on the move:
Despite her decision, Marj was deeply unhappy for many years about moving away from her house in Stoke. We know because she’d say she wanted to go home most days, however much we tried to please her. Sad to say, it is only as Marj has become more dependant on us that she has relaxed into her new home. Now, as far as we can tell, we and others feel Marj is content. We are very grateful that Marj bravely made the move when she did.
You are there for your elder partner, relative or friend. Who is there for you? Do you have a support network, both physical and emotional? How do you manage your energy so you have enough for everything you need and want to do AND keep some in reserve for being occasionally awesome and/or emergencies?
Your support network
Incredibly 1 in 8 working adults are carers (ref Carers UK website). Incidentally men make up 42%. The true number of carers in the workforce may be hidden since many children, spouses and friends don’t think they are carers because they work.
We all, especially carers, need a network of family, friends, co workers, professionals and other resources that energise us. Find more energisers. Ditch the sappers.
First, registering with your GP and local council plugs you into a professional support network. Even if that support network does not always appear to be a well oiled machine, it (eventually) opens up benefits and rights eg advice on how to cope, respite care and even financial and emergency care help. You automatically get a free flu jab for example, since you support a vulnerable adult. Social services literally need to keep you on your feet. While healthcare delivery is pretty consistent across counties, social care delivery is not. For example in Bucks, Carers Bucks play a pivotal role, in Oxon, Age UK takes the lead, so check with your GP first.
Secondly, letting people you work with know you are a carer is daunting – will they doubt your commitment to your job/career? Outing yourself as a carer to your employer is practically taboo. If we are going to support our ageing population without adding to the tax burden, we need to support working carers better.
Even if your elder is eligible for help, you’ll still need to arrange care coordination, medical visits, finding a care home etc. The good news is that enlightened, compassionate employers are on the rise – it’s now an economic imperative for businesses to retain skilled staff. It’s great to see initiatives like Employers For Carers.
A little flexibility on both sides can go a long way to enabling a carer to contribute fully to the business. All the carers I’ve met are incredibly resourceful, organised and creative, so try discussing flexile working with your boss. Agree how to accommodate important appointments and potential emergencies with minimal inconvenience to either party eg working from home occasionally. Try not to use annual leave for care duties, you’ll burn out. The critical things to make this work are 1) super timely and transparent levels of communication between employer, colleagues and employee to make this work (this takes practise and iteration). For example, use software (eg Microsoft Calendar) to help avoid misunderstandings about key dates for any party. And, of course, 2) delivering what is expected of you.
Last but not least, consider family and friends around you. Could more family members pull their weight? Could you ask for more help? It is likely there is more potential help on offer than we are tapping into. Work out who can do what, no matter how small (it all adds up) then devise and share a task rota. Picking up a few bits at the shop, collecting a prescription, covering a care shift or best of all, giving you a day or night off, are wonderfully supportive acts for a carer. Who might be able to do that for you? At the very least, occasionally arrange ‘quality time’ with your partner and/or best mates, away from care duties. Click here for more tips to free up your time, because you’ll need it for…
I realised (again) recently how important replenishing ‘me time’ is. Usually family + work + care + me time is ‘broadly’ in balance (ish), with a bit of wiggle room to spare for emergencies. Throw in a snow fall and things get out of whack. Stepping in as full time carer for Marj because her domiciliary care team could not reach her meant usual routines had to give. I compromised on things I love doing and was shifted towards frazzle (a particular risk at this time of year). To date our Christmas decorations aren’t up, ho ho hum.
And breathe. ‘When life gives you lemons, make lemonade’ is a useful mindset in times of pressure. If I was going to be Marj’s full time carer for two or three days, then we’d blooming well make it as enjoyable as possible. And performing all care tasks myself back to back did give me fresh insight into what small adjustments were needed to her care plan.
The practical challenges aside, carers also experience a wide variety of limiting emotions which can be challenging to deal with. Over the years I have felt guilt, inadequacy, anger, frustration, isolation and helplessness. I don’t think carers talk about this enough.
‘Me time’ is self-help that helps me manage unhelpful emotions and keeps everything in perspective. It is not a luxury, it is an essential. What about you? Let’s assume for now that we all get the sleep, healthy food/drink, sex and exercise we need (uh huh). And also that we don’t take on too much (please don’t tell me you iron tea towels). On top of our more basic needs, I believe that to reduce risk of frazzle, at least once a week but ideally more, we must gift ourselves at least an hour of time. We invest this precious hour in something that gives us joy. It can easily be free or low cost. Carer ‘soft play’ if you will.
These work for me:
Pilates and guitar lessons. The music (and exercise) in Pilates and the joy of nailing a new melody on a guitar lift me every time.
A walk while listening to a podcast.
Any pampering, eg facial, massage etc (Santa, please note).
Reading a new ‘Q’ magazine back to back and sampling the new albums on Spotify without interruption.
An unexpected pole dancing class (admittedly this has only happened the once).
Some other ideas:
Mindfulness / journaling / gratitude practise
A hobby eg crafting, birdwatching, dancing, musical instrument etc
Regular visit to zoo / gym / cinema / theatre / gig / garden centre / gallery / museum
Sport or reading the paper in a favourite coffee shop etc
An evening class
The only ‘rule’ is that the time invested must be 100% for your benefit alone and that it brings you joy. You may get inspiration from your childhood passions. Your ‘me time’ need not be in any way productive, but it might be important for you that it is (it is for me).
Do you have the support network you need and how can you build on it? And how do you / will you invest your ‘me time’? Let us know what you recommend and have fun.