For carers of elders in Oxon/Bucks & beyond

18. Quick stress de-fusing tips for carers — August 31, 2018

18. Quick stress de-fusing tips for carers

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According to June’s Carers Week organisers, 78% of carers say they feel more stressed because of their caring role.  Certainly in my experience few people, other than fellow family carers, fully understand the pressure felt by being responsible for an adult relative 24×7.

Carer’s wellbeing is such a thing, there are even a few cat memes on the subject… as you will see.

Seriously though, when you think about it, there are employment regulations that rightly protect people who work long hours and disruptive shift patterns, but there’s no such protection for those who care for relatives at home.

Unfortunately we carers can expect some long term stress effects and (hopefully only) occasional episodes of acute stress, so it’s important we learn how to manage our energy and stress levels.

Now, perhaps like you, I’ve done a little reading about and ‘had a go’ at mindfulness in the past, so I understand the science a bit and how it could help me.  But I’ve just never found the time to follow through with the regular practise mindfulness needs to be effective.

So at the July Carers Bucks meeting, I found it very helpful when Sally explained in ‘carer focused’ terms how I and other carers could look after ourselves a bit more during the ‘acute’ moments we find ourselves in from time to time.

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Sally explained how an old (in evolutionary terms) part of our brain, the amygdala, which is responsible for ‘fight or flight or freeze’ can, if we’re not mindful, hijack our rational thought with an emotional response that can cloud our thinking.  While we can’t switch this part of our brain off, we can ‘shift’ it when it ambushes us.

Apparently we feel long term stress physically in our bodies first, but we tend to ignore these physical symptoms and battle on.  For me, my shoulders get very tense, for you it might be something else eg headaches.  Read my blog post #5 Looking After YOU for some additional help.

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It’s often only when we are ambushed by emotional symptoms (like anger, frustration, hopelessness, resentment) that we start paying attention *guilty*.

Sally pointed out that while we may have no control over the stress resulting from how someone else is behaving or from their choices, we can choose how to react to it.

Here are her quick ‘in the moment’ tips that shift our emotional ‘fight/flight/freeze’ amygdala back to a more rational, problem solving frame of mind.

  1. ‘Scaling’ the challenge.  For example, asking yourself ‘how am I feeling on a scale of 1 to 10 about this situation’ invites your rational brain to kick in.  It’s intriguing how merely quantifying something stressful subdues an over-emotional brain.
  2. ‘Clenching’. If you find yourself angry, clench your fists and any/all other muscles you can summon in that moment to take control of the tense physical reaction.  When you eventually relax, you will find the anger has eased.
  3. ‘Belly breathing’. When we breathe in, we tense and when we breathe out, we relax.  So breathing in deeply (using our belly/diaphragm) to a count of 7 and out to a count of 11, for example, ‘forces’ us to relax.
  4. ‘Thumb blowing’.  If another person is angry or upset, ask them to blow on your (or their) thumb!  I’ve not tried this yet but I can see how it would be hard to stay angry while blowing on a thumb.  Apparently this works well with angry children too.  Who knew?

I used ‘scaling’ very recently, when one of Marj’s primary care workers was admitted to A&E.  On top of other work and family commitments I had to step back into the hands-on care role while also finding a replacement to ensure Marj’s care worker did not feel pressure herself to come back to work too soon.  Initially, I just couldn’t help feeling overwhelmed. Quickly remembering to scale immediately freed me to remind myself how I’d been in this situation many times before and had figured it out, which I went on to do.

I recommend you try these tips out too, let me know how it goes.

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Love

Maud&Mumlogo

Helpful stuff you may be interested in:

This YouTube video by Braive (I’ve not used them, they’ve just made a good video!) explains our ancient ‘fight or flight or freeze‘ mechanism.

I like this animation by Alzheimers Society of Ireland.

Mind has some helpful tips for carers (from 2014)

17. Helping elders move and settle into a new home — July 31, 2018

17. Helping elders move and settle into a new home

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It’s one thing deciding to move and quite another to do it.  Especially when you’re leaving your memory filled family home, where you’ve had roots all your life.

‘Right sizing’, in theory, allows us to declutter and let go of the material things that weigh us down.  Moving into a smaller, more easily maintained space may even release cash for travel and treats for us or our families. Retired homeowners releasing cash from their homes took an average of £78,000 last year, it can be life changing for the equity rich / cash poor and reduces outgoings.  Wealth can also be passed on free of inheritance tax if you ‘survive’ another 7 years.  However the older we get, the more overwhelming moving house can seem.

I’ve already written about how Marj decided to move in with us here.

Whether moving into a new home near or with relatives or into a care home, Marj’s and my experience of the subsequent moving process may help you too.  Here are our tips…

Get help

All the family need to be involved.  They can all help, even in small ways whether simply giving encouragement or helping with the preparation.  It’s a stressful time for everyone so it’s a good idea to share the tasks.

Be clear about arrangements

Make sure you agree the practicalities and implications with family members and that the interests of the elder are prioritised.  This may include financial and legal matters. The elder may intend to be generous with gifting possessions that might be better sold to help generate cash for their own treats or funding care, for example.

Allow plenty of time

The main thing is to allow plenty of time to get ready for the move.  Marj’s daughter took time over many weekends to help Marj decide what she wanted to take with her. They went through all of Marj’s possessions together.  Deeply sentimental or valuable things were to go with Marj and were put in one corner of the spare bedroom.  Things to give away were placed in the opposite corner. Marj’s daughter noticed some things criss crossed the room many times.

Going through photos, possessions and associated memories, most shared with her late husband, was deeply emotional for Marj.  Her daughter’s support was very important in this period.

Decluttering benefits others too

Some larger furniture like the dining room table and chairs were gifted to a relative, other things to charity.  It really did make Marj happy to know that her things would help other people.

Keep familiar furniture and furnishings

Meanwhile, down south, Marj’s son and I measured up for Marj’s furniture and made sure it could all be fitted in using a floor plan on graph paper to double check.  It was a tight fit but we managed to fit most of it in, so Marj would continue to have familiar things around her.  This was definitely not the time to go minimal or ‘skandi’, just too discombobulating.

Storage only stores up challenges

We put some of Marj’s furniture in storage while she lived in our spare room for 6 months (during the build of her annexed rooms) but we weren’t tempted to leave anything in storage permanently.  Just as well. The burden of disposal would be too much now on top of everything else.

Maintain choice

Marj chose her kitchen, how her furniture was arranged and where the knick-knacks were placed.  We made sure everything was as safe as possible and that all her most precious things were on display.  Over the years, cupboard by cupboard we’ve had to donate things like long unused kitchenware to charity, to make room for aids that help Marj stay in her home.  But I’m happy to say that everything of sentimental value has been kept.

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Stoke knick-knacks seem especially fine 🙂

Stay positive

Throughout, it’s really important to stay positive and help the elder focus on what they will gain from the move. I introduced Marj to local befriending groups where she did make one firm friend.

Living right next door to close family yet keeping herself to herself when she wanted was a big incentive. Joining family parties and seeing the great grand-kids are things Marj would have missed out on in Stoke.

Settling in

Celebrate the move and ask everyone to visit and give reassurance.  You’ll need to help the elder find their feet in their new community.  Think about what it would take to make you comfortable and do it together, you may find new things that interest you too.  It’s a big move so make extra allowances. Small things like always having a vase of flowers within eye sight helps Marj a lot too.

Make sure you look after you too.

Help from local authorities

Aylesbury District Council (AVDC) together with the Better Care Fund has housing grants for older residents who need home improvements or help moving.  Hospital Discharge Grants of up to £10,000 for stairlifts and ramps, Relocation Grants of £20,000 and Essential Repair Grants of up to £10,000 are also available.  Other local authorities may have similar initiatives to support elders, so it’s worth checking.

So when is the right time to move?

Move earlier rather than later.  Move before a ‘crisis’ like a fall.  And the earlier we all start preparing for rightsizing, the easier it is and the wider the options open to us.  As soon as our house empties, we’ll be rightsizing for sure.

Make sure your current or future home can be adapted in the future.  I remember Marj asking, when we were building her rooms, whether she could have an ‘upstairs’ like she was used to.  In actual fact, an ‘upstairs’ would only have been used for a year or so after she’d moved in with us and cost us all a lot more.

To housing policy makers, builders and designers

We all need more flexible housing that can accommodate people from 0-100yrs with all levels of mobility, to encourage us all to rightsize at the right time throughout our lives.  We also need more aesthetically pleasing bathroom ware that both looks great and is easy to use.  Just making sure doorways are wide enough for wheelchairs doesn’t cut it anymore – please help.

What’s your experience?  Do share…

Love

Maud&Mumlogo

 

 

 

16. Practical style tips for elders and their carers — June 28, 2018

16. Practical style tips for elders and their carers

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I aspire to be so stylish.
More awesome shots by Ari Seth Cohen
on his blog www.advanced.style

By way of light relief and since the sales are on, here are my recommendations on clothing for the stylish woman or man who should find themselves needing extra care support.  In other words, what works for the elder and also helps the carer.

Sorry, slippers are out

Sheepskin slippers
Yes, even these beauties

Most important of all is what you wear on your feet. However gorgeous, slippers are not a good idea for anyone vulnerable to falls, whether standing (aka weight bearing) or walking.  Instead you need ‘slippers’ that are like shoes, that fit well, have good heel support and rigid non slip soles.  In fact your ‘slippers’ have to be so shoe-like, you may as well do as Marj does and wear actual shoes inside.  Shoes help Marj stand up far more confidently and securely than any kind of slipper.

After experimenting over the years, Marj finds Clarks’ Mary Jane styles smart, light and comfortable with black cotton socks.  Just as importantly I find them easy to whip on and off too.  No one wants to be be wrestling with feet.

For men, I would try a velcro/rip tape fastening ‘athleisure’ type shoe from Clarks’ again, or perhaps a more traditional pair, in the sale here at House of Fraser.  In my experience ‘slip-on’ styles don’t tend to slip-on and off that easily for the carer.  Hotter and Cosyfeet make shoes that may be suitable too, the most important thing is that they fit and support the whole foot and ankle well.

Tip from Peter, a reader – ‘We also have used Clark’s Hotter and Cosyfeet for shoes. As J wears an orthotic brace to support her weak leg she requires a different shoe size on each foot. Only available at their outlet in Street (not mail order) but Cosyfeet do odd sizes for a supplement of £10. I think Clarks’ will do that but much more expensive.’

Underwear

Comfy knickers are important, but you may start to find that continence pants are more convenient (I’ll cover these in another post).  As for bra’s (if you choose to wear one, don’t feel any pressure), we found it essential to get re-measured. Much as we may deny it, our size often changes over time and bras start digging in.  M&S has a very good bra fitting service and produced some non underwired bras that were pretty and comfortable.

Base layers

Marj wears a fresh cotton t shirt every day.  She changes into it in the morning and keeps it on when sleeping at night.  This stops her from feeling chilly while changing into her pyjamas.

As you’ll read, we use M&S for pretty much all of Marj’s clothing because it’s a literal ‘one stop shop’.  This is due to easy home ordering & exchange and because I always seem to be ordering school uniform too.  Other stores are available!

Tops

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A favourite M and S jumper, until it had an (accidental) boil up.

Then it’s usually a sweater of some sort.  Sweaters needn’t be frumpy.  This item is the most expressive of Marj’s style.  They must be crew neck (roll necks are too fussy, v necks too revealing). If I should buy anything that makes her feel too ‘old lady-ish’ (or with stripes) she will reject it.  Quite so. Marj loves sequins and sparkle.

Marj’s favourite colour is light blue so I always try to have at least one or two sweaters that colour, also coral, turquoise, red, navy and black looks fab on Marj.  I believe stronger colours look best on us all as we age.  The greige or pastels that many stores prescribe us in their ‘classic’ ranges tend to wash us out.

Viewing colours and styles on the iPad or ordering a couple of options allows Marj to choose.  Marj used to love going shopping and we had fun with the shopmobility wheelchair.  A shame Marj doesn’t fancy it anymore.

In terms of functionality I would advise top lengths of no longer than hip length otherwise fabric falls in the loo.  I tend to go for wool/wool mix and cotton/cotton mix for warmth and breathability.  Fleece fabrics are great for when it’s very cold, easy to wash and dry too.

A favourite blanket over the lap or a chunky cardigan or wrap is useful on top of a sweater on colder days.

Trousers

We depend on the M&S Classic range for their ‘short’ inside leg option, comfortable, hard wearing trousers in a variety of colours.

I’ve learned that trousers with an elasticated waist are best for quick and easy pulling on and off, important when legs are unsteady.

Dresses and jackets

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Looking great Marj

For special occasions nowadays.  My advice would be size up for a dress and down for the accompanying jacket if in a wheelchair. That way you sit comfortably, yet the jacket looks more tailored / chic. Three quarter sleeves prevent  fabric from swamping the wearer and shows off favourite jewellery or a manicure.

Pyjamas

Marj wears pyjamas over her t shirt, cotton in summer and fleece in winter and always wears bed socks as her feet tend to get cold.  We have microwaveable bed socks that give and retain heat if Marj ever gets very cold.

Looking good all day long

At meal times, Marj clips a tea towel around her neck to keep her clothes clean. It feels nicer than any sort of ‘bib’ and is more secure than a napkin.

Saving money

Sign up to retailer websites or newsletters before you buy if you can, since they tend to send you a discount code if you don’t buy anything immediately or offer a discount to encourage you to sign up to emails.  I also use the seasonal sales or 20% off offers to replenish worn or shrunken items and drop hints to relatives before Christmas and birthdays.

Work it

I know I’ve been rather more conventional than the opening photography may have suggested.   However, there is nothing stopping anyone from working a stronger look.  Here are some awesome female role models and some coaching from GQ for the men in your life.

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Emiko Mori, 94 @1000wave Credit Chinami Mori

A stronger look does invite (hopefully positive) comment and is a very good way of opening a conversation with someone in my experience, if that is what you’d like.  A bonkers charity shop scarf could be a good place to start.

One good thing about ageing is that people expect a little eccentricity and one should be caring a little less about what other people think too.  So however physically ‘able’ you are, elder or carer, express yourself* and dress to be YOU.

Love,

Maud&Mumlogo

*Madonna, 1989

 

 

 

15. So, are you a carer? — May 31, 2018

15. So, are you a carer?

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ladies wearing love heart hats

Even though you’re reading this (perhaps you’re ‘caring curious’), it’s likely you don’t identify yourself as a carer even if you are actually helping someone.  Interesting isn’t it?  I’m guessing the ‘carer’ tag isn’t a very ‘sexy’ identifier, perhaps even brings some negative imagery with it?  My friend, that has to change.  If we don’t change perceptions and attitudes around those who freely care for friends or relatives, thousands of people will not get the extra support they need and are eligible for.

I have to put my hand up.  I didn’t consider myself a carer for the first six years of caring for Marj, even as she lived in our house and increasingly came to rely on me.  For example, I hid the full extent of my caring responsibilities from my employer, thinking they might perceive me as less committed. On paper there was no need for me to think that, they were an increasingly ‘woke’ employer and more advanced than many.  I didn’t ask my GP for help or advice either, though they must surely have known and/or been able to help.

Equally though, the ‘being a carer’ bit of what I do just wasn’t that interesting to any non-carers around me.  In the same way as discussing parenting with someone who is not ready, wanting or able to start a family, it’s equally dull (or even painful) for them. However, it’s important that we do talk about (and support) family carers, so more people can choose to care and work if they want to (in the same way that society seeks to help people parent and work).

Carers Bucks estimate that every £1 invested in supporting carers saves the public purse £10.  This is due to their cared for relatives needing less hospitalisation, residential care and/or other social support because they are given personalised support on a regular basis.

Now back to you.

Do you pop in to see your dad every weekend, do a spot of cleaning perhaps?  Dude, you’re a carer.

Do you ‘just’ do some shopping for your mum every now and again? Babe, you’re a carer.

It’s awesome what you do for your relative.  Yet even if you don’t think you need it now, you’re going to need help in the future. I’ve learned that being prepared for the ‘next stage’ (whatever that is) is vital.

There are experienced and kind people waiting to help you nearby, on the phone or face to face.  Any meet-ups are during the day or in the evening to accommodate your other responsibilities.  In Bucks Carers Bucks are the first port of call for carer support, in Oxon  Carers Oxfordshire has an affiliation with Oxon County Council, but it’s worth checking with your local authority (LA). Other LAs will be different so try googling or asking your GP who should know.

Speaking of GPs, at the Carers Bucks’ AGM the practice manager from the Haddenham Medical Centre (Ellen) talked about the incredible support their practice team and GPs give their carers.  As a result they have won an ‘Investors in Carers GP Standard’ Award. I’d love every GP practice to provide the sort of support they do, in the meantime ask your GPs how they might be able to help you.

Also at the AGM, Carers Bucks role played examples of the typical calls team members get everyday from carers.  It made me tear up.  Why?  Because it took me back to the time when I badly needed help and didn’t know where to turn.  Despite thinking I could do it all on my own, I found myself in an unfathomable infinity loop inside Social Services, clearly a time of strong emotions.  Sally at Carers Bucks helped me find the way forward and get the support Marj needed, which in turn meant I could regain my own balance.

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Carers Bucks reveal ‘a minute in the life’ of their support workers.

AGM attendees learned that an estimated 50,000 people in Bucks are carers, that’s just over 9% of the total population.  There are likely to be many more people ‘casually’ yet consistently looking after elder relatives, because that is just what you do. People for whom English is a second language or with less time (large family/single parent/more than one job) or without the resources (no internet access) are at particular risk of being trapped in a Social Services unfathomable infinity loop, look out for them.

Let’s identify ourselves and access the support for us and our elders.  Perhaps we can help each other out a bit through this blog too.

Love,

Maud&Mumlogo

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Maud sharing the demands on carers and the help we value from professionals.

 

 

 

14. What happens at a Carers Bucks AGM? — May 11, 2018

14. What happens at a Carers Bucks AGM?

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I’m about to find out

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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.

Screen Shot 2018-05-10 at 19.53.44I’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 love a chat, so do say hello.

I’ll post some pics from today and share what I learned from the AGM in my next post.

Love

Maud&Mumlogo

 

 

 

 

13. The free care available from the NHS — April 30, 2018

13. The free care available from the NHS

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How your GP can help you and your elder

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.

NHS-continuing-health-care

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…

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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.

Your advocacy

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.

Love,

Maud&Mumlogo

PS, if are under any impression I am a qualified medical professional, I am not.  Please always seek your GPs advice.

12. The Lasting Power of Attorney (LPA) — March 31, 2018

12. The Lasting Power of Attorney (LPA)

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lasting power of attorney health and finance

When LPAs are a good idea

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.

One older lady and one younger lady wearing easter bunny ears

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11. Why you need a Care Plan and how to do it (copy mine) — March 11, 2018

11. Why you need a Care Plan and how to do it (copy mine)

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When do you need a Care Plan?

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.

Care Plan Template

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.

Not forgetting…

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,

Love,

Maud&Mumlogo

IMG_4322
A fabulous ‘selfie’ of Marj with her son and daughter.

 

10. Getting help from older adult social services — February 28, 2018

10. Getting help from older adult social services

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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:

  • an ‘in touch’ service
  • care in own home (from an LA contracted service or they may even be able to find you private domiciliary care services through a ‘care broker’ service, for £250 last I heard)
  • day care centres or other daytime opportunities and activities
  • ‘telecare’ and other assistive technology
  • respite care
  • 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.

Other Support

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?

In conclusion

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.

Good luck and let me know how it goes.

Maud&Mumlogo

 

 

9. Capturing a life’s story — February 14, 2018

9. Capturing a life’s story

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Serendipity lends a hand


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.

an older couple marj and jack
Marj and her husband Jack

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.

dear grandma from me to you book journal
Marj’s journal

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.

ladies wearing love heart hats
Happy Valentine’s Day

Maud&Mumlogo

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.

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