For carers of elders in Oxon/Bucks & beyond

Maud cares for her live-in mother-in-law Marj. Shares time-finding and money-saving tips. Positive practical help for all those who care for an elder friend or family member and also work, parent, partner and so on… :-)

21. Can we ‘self-help’ to slow or even avoid dementia? — November 9, 2018

21. Can we ‘self-help’ to slow or even avoid dementia?

Dementia and Alzheimer’s statistics are now staggering. Both diseases now combine to be the number one cause of death in England and Wales, with 1 in 3 people born this year affected in their lifetimes. We’re all likely to know someone impacted already.  This impacts carers too, of course.

While a cure remains tragically elusive, healthcare resources are channelled into diagnosis and (usually) the prescription of a single drug pathway which may or may not help. The jury seems to be out on the current prescribed drugs’ effectiveness, at least anecdotally.

While it’s wonderful that modern medicine has extended our average longevity, our challenge is how to live those extra years well not poorly.

Since Wendy Mitchell got me more ‘woke’ regarding dementia (see post 19), I’ve been noticing the current thinking on how we might be able to help ourselves.

The rationale is that while we can’t change two of the risk factors for dementia, our genetic profile and age, we can influence the third risk factor, our lifestyle.

Is there such a thing as a dementia-slowing lifestyle?

I recently met Rosie Pearce, a registered nutritionist, who got me interested in the Brain Health Programme she runs in Oxon / Bucks.  I called by her home recently and she took me through the background.  Rosie shared some tasty ‘brain foods’ too (find some recipes here).

It all started for Rosie in 2015 when she heard Dr Dale Bredesen present his paper: ‘The Reversal of Cognitive Decline: a Novel Therapeutic Program’.  He has since followed up his early findings in his book ‘The End of Alzheimer’s’ and a further study involving 100 individuals, published earlier this year.

In Dr Bresenden’s studies, people with early stage Alzheimer’s appear to have had their symptoms halted or even reversed through diet, lifestyle and the correction of biochemistry imbalances.  He writes that there are many factors that can lead to signs of Alzheimer’s disease, yet he proposes that our brains are resilient and plastic and can thrive at any age given the right conditions.

Rosie, whose mother had Alzheimer’s, was inspired to include Dr Bredesen’s principles in her own work.  Around the same time Cytoplan, also excited by Dr Bredesen’s approach, created the ‘self-care’ Brain Health Programme.  It’s this six workshop course that Rosie (and other trained nutritionists) adopted and coach people through around the country.

Brain health

Screen Shot 2018-11-08 at 11.49.33

There seems to be mounting evidence that supports the importance of lifestyle on our brain health. The NHS and Alzheimer’s Society now list their own lifestyle recommendations.

Dr Breseden proposes that nutrition, gut health, sleep, physical activity, stress management and brain activity are all vital contributors.

Spoiler alert – this is how we help ourselves:

  • eating ‘low carb’ (and low sugar), ‘normal’ amounts of protein and ‘good fat’, high fibre, veg and fermented foods,
  • probiotics can reduce anxiety and depression,
  • turns out that intermittent fasting is as good for brain health as it is for cardiovascular disease,
  • seven to eight hours sleep,
  • moving more and physical exercise,
  • lowering stress,
  • learning new things.

I think you can guess what we should do about alcohol and smoking.

It appears that the same lifestyle that helps keeps us physically well, reducing the risk of long-term health conditions like cardiovascular disease, stroke, type 2 diabetes and cancer also applies to potentially reducing the risk of chronic brain disease.  Thinking it through, why wouldn’t our whole body’s biochemistry work best when treated ‘well’?Screen Shot 2018-11-08 at 11.51.50The beautiful simplicity of this is good news.  Still, it’s blooming challenging.  There’s been longstanding, profitable interests in keeping us all hooked on sugar and large portion sizes, never mind tobacco and alcohol (puts down Twix).  And that’s before considering the combination of ‘always on’ work practises and empty bravado that fosters a culture of ‘busy-ness’, over-working and under-sleeping.

Where to get support near you

Switching from a ‘fight or flight’ to a ‘rest and digest’ lifestyle to help the brain (and body) stay well, sounds great.  But it can be blooming hard to make lifestyle changes on our own or altogether as a household.

There are local (and free) organisations who are ready to help us all get fitter and healthier, some of them in Oxon / Bucks are listed here.

For anyone already a bit worried about ‘brain fog’, low mood, anxiety, poor concentration or cognitive brain ageing, The Brain Programme might be a life changing option too. This is where Rosie can help.

Rosie leads small groups through the six interactive workshops.  An accompanying booklet helps identify individual priorities, visualise objectives and includes strategies to achieve them.  All focus is on small, personalised, manageable changes that are easy to implement and stick to.

The course is perfect for people who find lifestyle changes easier when supported by others. (I’m targeting exercise right now and I rely on classes to stay motivated). The Brain Programme also seems (to me) more genuinely altruistic than Weight Watchers or Slimming World (I did go to a group once).

Screen Shot 2018-11-09 at 11.14.32

An offer for Maud & Mum readers

Rosie gives introductory presentations on the Brain Health Programme across Oxon/Bucks. If you want to find out more, contact her direct at info@nutritionbyrosie.co.uk or via facebook @nutritionbyrosie or twitter @nutribyrosie.

Quote ‘Maud & Mum’ and she’ll offer you a 20% reduction on the programme’s full price.  And for carers, if you think both you and your elder would benefit from the programme, Rosie will offer a “buy one get second half price”.

In the meantime, look after yourself.

Maud&Mumlogo

Further reading:

  • I came across neurologists Dean and Ayesha Sherzai in this Times article (you’ll need to sign up to view the whole article or email me for a scanned copy).  Their book, The Alzheimer’s Solution promotes eating, sleeping and exercising well.
  • Why we sleep: The New Science of Sleep and Dreams‘ by neuroscientist and ‘sleep scientist’ Matthew Walker is a fascinating book that has completely changed my attitude to sleep. If read at night, it’s a book that’s also very good at sending you to sleep due to its high science content (the author is open about not minding this at all). Now, despite my owl-ish ways, we rigourously target eight hours sleep in our house.
  • So called Blue Zones, places around the world with the highest clusters of the long-lived, have helped guide thinking on healthy ageing.
20. Oxon and Bucks older adult service providers — October 6, 2018

20. Oxon and Bucks older adult service providers

Useful links

I’ve attempted to pull together a definitive list of the links to older adult service providers in Bucks.  I’ve also added many available in Oxon.  All of them know and support their Local Authority (LA) older adult care services.

If I’ve missed any out, just let me know, I’ll be delighted to add. Check first to see if your area is covered.  Similar services will (I hope) exist outside Oxon and Bucks too, so use them as references to help you explore a different LA.

The national Care Choices website might be a good place to start for readers from outside Oxon and Bucks, they produce region specific Care Services Directories too.

Bucks / Oxon county line

You’ll notice how services differ across Oxon and Bucks (and other) LA county boundaries.  This is one of the frustrating things about care services when compared to (national) health services.  This is one of the reasons why you may have already found accessing help rather arduous.  I hope the links below help.

Local support for living well at home

Age UK Bucks help older people achieve and maintain their independence.  Contact them for access to free services such as advice, welfare benefit checks, a telephone befriending service and ‘befriending plus’ home visits.  I use their access to local pre-screened (pay as you go) handy people, chiropodists, hairdressers, computer training, home help, garden maintenance and home relocation support.  They love to hear from potential volunteers too. Here is the national Age UK site so you can search for support by postcode.

Bucks Prevention Matters is a free short term service for over 18s who don’t receive Bucks County Council funded Social Care.  The service helps people with, or recovering from illness build an independent and fulfilling life.  This might include making new friends, improving health, feeling confident and safe, learning new skills or hobbies and more. Covers Bucks and Milton Keynes. Referral by GP, carer, family member or self to see a Community Practise Worker.

Care Advice Bucks also provides information about available care services for Bucks residents, whether at home or in residential care.

Dementia UK  offers specialist support from Admiral Nurses.  Unfortunately not yet in Bucks but they do operate in Oxon if the person living with dementia resides in an Order of the St John Care Trust home.

Local memory services

Wherever you live, if you’re worried about your memory, the Alzheimer’s Society offers a range of memory support services including info and advice, support groups and other help to stay independent.  They also organise singing groups and foster dementia friendly environments in the community.

Bucks Mind offer two clubs for older adults living with dementia or memory loss in Chesham and Prestwood.  Both aim to support independence for as long as possible.  Self referral is possible too. For those with an early on-set dementia diagnosis, Bucks Mind offer a six week course to help maintain wellness. Here’s the national Mind site too.

Lindengate is a mental health charity in Wendover (Bucks) that offers specialised gardening activities that help those over 16 with mental health needs, including dementia.  I’ve not been yet, but by all accounts it’s a marvellous place.  Your GP or healthcare professional can refer you or you can self refer (from their website).

Advice on local care services

Healthwatch Bucks and Healthwatch Oxon are the equivalent of Tripadvisor for Bucks and Oxon health and social care service providers. We users can rate or give feedback to local hospitals, social care services or dentists etc, often driving change that benefits all. These are also the organisations to contact if you would like information and advice on a specific service provider too.

Local carer support

Carers Bucks. If someone relies on you for help or can’t manage without you, then these guys can support you.  For info, advice, training and access to support groups.

Carers Oxfordshire provide similar support to Carers Bucks.  They also have an emergency support care service (usually 1 to 48 hours in length, depending on needs) should a carer themselves have an emergency and can no longer care. Oxon carers need to join the service before the emergency! More details here.

Carers Trust Thames is a network of charities that provide info, advice and practical support to carers including respite breaks and specialist personal care across Bucks, Milton Keynes and some West London boroughs.

Help with health and fitness

Live Well Stay Well help find the support needed to get healthier e.g. stop smoking, get more active, reduce stress etc. For all ages in Bucks.

Active Bucks helps all Bucks residents access selected activity sessions (often including a free trial session voucher).  My postcode search served up Taekwondo :-).

NHS Bucks I couldn’t find much on their site about dementia or mental impairment support when I used their search function (feel free to put me right), but it’s a useful resource for Bucks health matters.

Help with transport

If transport support is what’s needed, check out Bucks County Council community transport and the Chilterns Dial-a-Ride service.  If you live in Aylesbury Vale, you may also be eligible for travel tokens too (if you don’t have a bus pass).  These are accepted by some taxi companies in the Vale (check first).

Safeguarding

Bucks and Surrey trading standards’ remit includes helping protect older residents from cold calling and scams, offering useful door stickers.

Good luck x

Maud&Mumlogo

19. The Bucks Dementia Conference Sept 2018 —

19. The Bucks Dementia Conference Sept 2018

Been to a Dementia Conference recently? Ever?  Me neither.  So of course I accepted the invitation from Carers Bucks and so, last Friday, joined the gentle throng at The Gateway, Aylesbury.

Attendees at conference
Fellow attendees (with rudimentary attempt at giving anonymity)

The conference aimed to bring those living with dementia and their carers closer to Bucks policy makers, support charities and organisations.  Thoughtfully, so more carers could attend, people were on hand should anyone need a break from the main auditorium.

There was a great turn out and it was good to see a few friends from my Carers Bucks group: Jenny, Brian and Lynn.

The agenda (abridged)

  1. Wendy Mitchell on adapting to life with dementia
  2. Buckinghamshire experiences from people with memory impairment and carers
  3. A poem and a performance by the local Carers Choir
  4. Opportunity to share our views on Bucks dementia services
  5. Q&A to a panel of service providers, review and next steps

Listening to fellow attendees, many were seeking support from Bucks organisations in order to better ‘self manage’ memory impairment and dementia. And as one gentleman eloquently and emotionally put it, hope for the future.

A trailblazer’s point of view

IMG_6567
Wendy Mitchell

Wendy Mitchell from Beverley, near Hull, was first up. A good scheduling decision as it turned out, because she was hope-full.

I read Wendy’s book ‘Someone I used to know’ earlier this year. I think it’s awesome.  Like no other book I’d read, it enlightened me on supporting someone through their dementia diagnosis and beyond.

Wendy’s book is insightful because she wrote it after being diagnosed with early-onset dementia herself, four years ago.  Wendy also blogs to record her memories and advocate for dementia understanding and research. She’s also a magnificent twitterer @WendyPMitchell.

At the conference, Wendy made the following observations.

Too often nowadays, a life with dementia starts with a diagnosis delivered with a cocked head, a pitying smile, negative language (‘sorry, there’s nothing we can do’), perhaps a prescription and a handshake that feels like a brush off.  No encouragement offered, no explanation of how life might change, how you can prepare, just a feeling of sadness.

[Sorry to say, that was Marj’s experience of diagnosis too, except that her assessment and diagnosis was delivered to her son. Makes me wonder if older people routinely bear the added indignity of being sidelined during their assessment and diagnosis.]

What effect might this be having? What if the newly diagnosed believe the white coated professional delivering the news, believe they’re helpless, believe nothing’s to be done?

Wendy’s point was that we know dementia is a degenerative disease and there’s no cure.  The diagnosis is bad enough, especially if you’re ‘early-onset’ (under 65), so let’s stop using words like ‘suffering with’, ‘senile’ and ‘old age’.  These easy-to-change words don’t set a person up for their best life with dementia. These words can even make or break a life, prolong societal stigma and stop people from seeking the help they need.  If you’re told you are ‘suffering’, why not believe it?

It’s no wonder many despair. How different would it be if this unwelcome, life limiting diagnosis came with positive support and a different mind-set on how to live a different life?

We were reminded that there is a beginning and a middle to dementia.  Not just an end, that so many of us jump straight to when we imagine dementia. It’s possible to live, and live well with dementia, but it takes ingenuity, cunning and new strategies to see the opportunities in this new life.

Wendy shared how she has prepared for and continually modified her home and life to outwit the challenges her brain throws at her.  She outlined how much you can still do though differently, with support, a screwdriver, a camera and a sense of humour.

Living as fully and independently as you can every day, really stretching yourself helps.  Having a rest or having other people help too much leads to forgetting. The story of how Wendy’s two week break from typing meant having to re-learn all over again was sobering. She’s not stopped typing since.

Wendy acknowledges that not everyone will be able to, or want to do what she has done, but she’s determined to improve lives for others who’ll receive a dementia diagnosis.

I’ve first-hand experience of how unfair, frustrating and gruelling dementia can be in its later stages for older adults. Wendy’s book helped me reframe. For example, I now focus on the emotions I bring to Marj’s care, making sure happiness is in plain sight. It makes a big difference for both of us.

IMG_6606
Hugs for ‘twitteroos’ too

Local perspectives

We then heard from some equally inspirational local people. Carer H read a moving poem written to her husband. Another, S who cares for her husband, shared her thoughts on the help gained from carer support groups. And T illustrated how especially challenging it is for young people who support dependant parents. P and S, both diagnosed with memory impairment, explained that people being unable to either see or understand their illness is doubly frustrating.  They gave the following advice based on their experiences:

  • Find supportive family and friends.
  • Take your care giver or supportive friend or family member with you to diagnosis.
  • Seek early signposting to support so you can learn how to manage new challenges e.g. developing strategies to remember important people.
  • Seek help from specialist support groups.  In one early on-set group, experts often visit to help its members plan for the future.
  • Competing in regular, hard exercise has a positive impact on confidence.
  • In any case, go outside, get out of the house even more than before.
  • Research clinical terminology to prepare for meetings with medical professionals.
  • Keep unhelpful stress down by seeking support to help challenge decisions you may not agree with (e.g. the DVLA revoking your driving license).
IMG_6609
The carers’ choir give voice

Local feedback on Bucks dementia support services

As a group, by table, we we asked to share our individual feedback on local dementia support services. The gentle but sure facilitator Mike steered us through this session.

From my table, I heard…

  • Things working well: centres of excellence (e.g. Lindengate), support groups, advocates like Carers Bucks and local services screened by Age UK.
  • Things not working so well: you’re given a diagnosis then expected to ‘get on with it’, the lack of follow up post diagnosis, no annual medicine review and a frustrating lack of joined up thinking amongst support services.
  • The gaps in support: low/no information shared by GPs on the support that may be available to help with new life strategies and options, little respite care available of different time lengths and at reasonable cost.
  • Suggestions for an efficient dementia service: design a new service ground up from a ‘customer journey’ perspective, a single point of contact for accessing coordinated support and more trained and valued carers.
IMG_6610
An opportunity to give feedback… thanks for asking 🙂

Oxon and Bucks service providers at the conference

During lunch and the afternoon break, the following service providers exhibited at stalls in the lobby.  I’ve expanded on what these organisations do in a sister post (#20), so they’re easy to locate later.  If I’ve missed any, do get in touch and I’ll add them.

Age UK BucksAlzheimer’s SocietyBucks MindDementia UK , Bucks and Oxon Prevention Matters, Healthwatch Bucks, Healthwatch Oxon, Carers BucksLive Well Stay WellActive BucksLindengate, NHS Bucks, NRS HealthcareBucks and Surrey trading standards.

The wrap up

The conference feedback shared and subsequent panel Q&A will be sent to attendees at a later date.  I’ll ask if I can share it all here too.

To Alzheimer’s Society, Carers Bucks and NHS Bucks and all the attending service providers, thank you very much for arranging the conference, listening and offering your practical support to everyone.

And finally, thank you to the generous and industrious local knitters (names not known at time of post) who kindly donated hillocks of free ‘fiddle muffs’.  As an ex-knitter herself, Marj loves hers and it’ll be useful as it gets colder too.  There’s one for Christmas too.

Love

Maud&Mumlogo

IMG_6654
‘Fiddle muffs’, thanks knitters

 

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

18. Quick stress de-fusing tips for carers

a98cbef32a354f7e4b290a21b23c2ca2--mad-face-skyrim

Carer Stress

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.

And what to do about it

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.

images-3

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.

Phew-what-a-week-300x238

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.

Quick tips

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.

images-6

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

images

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.

IMG_5826
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

 

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

light blue jumper
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

Lady in blue hat
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.

older lady in pink and rings
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?

ladies wearing love heart hats

Are you in denial?

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).

That you really do care is awesome

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.

Help is out there for you too

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.  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.

Photo 11-05-2018, 11 20 58_preview
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

Photo 11-05-2018, 11 31 46_preview
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?

I’m about to find out

Screen Shot 2018-05-09 at 15.03.01

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

nhs_sign_0-840x470

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…

IMG_4484

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)

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

Maud&Mumlogo

%d bloggers like this: