12 tips to prevent caregiver burnout!

It’s hard caring for a loved one and can be very rewarding, but it has considerable stress. 


Juggling life as a sole carer, with a job, the kids, perhaps even ailing parents or an illness yourself is very very demanding.  So is it any wonder that family carers are some of the people most prone to burnout?

Perhaps you feel..?

  • You are gaining or losing a lot of weight
  • You are losing interest in activities you used to enjoy
  • Overwhelmed or constantly worried
  • You are abusing alcohol or drugs, including prescription medications
  • Easily irritated or angry
  • Sleepy
  • Tired most of the time
  • Sad
  • You are having frequent headaches, bodily pain or other physical problems.


To help manage your caregiver stress you could;:



  • Accept help. Eg let other people cook for you.
  • Set realistic goals. remember you can’t eat an elephant in one go! It’s all about bite sized chunks!
  • Get connected online or join a traditional support group.  Eg get support from others eg request to join our open Facebook group – fighting strokes or our closed group fighting strokes -the loved ones.
  • Focus on what you are able to provide.  Don’t try to be perfect as you can only try your best.!
  • Seek social support. Go out for coffee or dog walk or eat lunch with a friend or ride a bike, (like my husband)
  • Set personal health goals.  Try to eat healthily, drink water and exercise regularly.
  • See your doctor.
  • Share your expectations with others.
  • Be more assertive.
  • Focus on positive relationships.
  • Share your feelings.
  • Listen to others.

Often you loved-one carers are the reason why most of us #strokesurvivors improve so well. 

You are vital in the #strokerecovery process and must never ever be underestimated.

I hope that helps 😊


NEW EBOOK! 


I Am Still The Same -Self help stroke recovery toolInternationally published author ‘Running Free’ (Amazon) .  Speaker –   Founder Fighting Strokes Kate’s story in 2 minutes

RT? Don’t talk about me without me. Patient engagement Tweetchat 14th April 16.00

  

So we have a new NHS buzz term ‘patient engagement.Well, The Kings Fund says,

 

‘The role of the patient is no longer as a passive recipient of care. Nowadays doctors are expected to engage patients in their own health, care and treatment. There are also a number of initiatives to encourage patient involvement in the design, planning and delivery of health services.’

 

So let’s see what my own experience was in 2010, albeit before the new hype started, around the phrase ‘patient engagement.’

 

Well, I was very much a passive recipient of life-saving care in ICU, although I was mistakenly conscious. Sporadically, ‘my nice nurses’, would often make me aware of the vast array of medical procedures I had no choice but to endure.

‘Engagement’ was nigh-on none-existent at a time when I was wrongly considered semi-conscious (for two weeks after my stroke), though in reality I was fully conscious the after week from emerging from my medically induced coma!

I put it down to that either I became conscious far sooner than my Glasgow Coma Scale results implied or the results were  interpreted inaccurately.  It is fair to say that many of my nurses – and all my many consultants – were not remotely proficient or confident or willing to use of my rudimentary letter board and life enhancing life line at the time.

I still remember the heart stopping moment (literally) when my body reacted badly (and in rare cases) to the dried blood being cleaned off my new PEG by an over-zealous ICU sister.

I experienced a painful out-of-body-experience, that rendered that ‘said’ sister a quivering, emotional wreck at the foot of my bed.  I remember her being consoled by the other staff, whilst I lay physically paralysed and traumatised in fear and incredibly vulnerable and lonely as my life literally flashed before my eyes.

(My husband, who was visiting at the time, thought the ‘crash team alarm’ was for another patient and assumed his ‘visiting time’ delay was because I’d soiled my ‘nappy’.)

Why also didn’t anyone engage with me as to why my beloved Earl Grey tea was on and then off limits? If they’d said,

‘Kate, if we give you tea and 35 mls goes down the wrong way into your lungs, you will drown, end of.’ 

But no, they used technical medical terminology to a lay person saying,

‘Kate, you can’t have your tea because you will silently aspirate.’

What?

Did you know what ‘silent aspiration’ was before stroke?

I wondered whether my traumatic (and post traumatic stress disorder) could have been reduced if someone had explained to me, or my family, that I was likely to suffer with extremely vivid and distressing hallucinations.

Hallucinations that were like awake-nightmares and which were not real, although convinced me of their reality. I still remember a recurring one, where after my loved-ones left for the evening, a particular nurse – I hated – would slowly start poisoning me with a fatal brown, graphite drip.  You see, I couldn’t do anything so the way I saw it in my blinkered terrified world was that why on earth would I be worth keeping alive?

Now, I know there is no such thing as a graphite drip and the brown fluid, flushed down my cannula, was to treat my severe constipation at the time.

Fast forward to rehabilitation, and my therapists became very goal-centred, well after a few months anyway.  Up until then, they had just been giving me passive or ‘no hope’ therapy.  My later improvements were down to pure unadulterated anger, self-belief and bloody hard work (with the help of my therapists) Proudly, my favourite nurse Oliver recently said, ‘that I actually drove my therapists far harder than they ever drove me!’

I was a former 70 mile a week fell runner after all and as a deeply committed full-on mother to 9, 8 and 6 year olds.  I was suffering from severe separation anxiety that no one bothered to ask about.  I mean let us see, are there really any mothers out there that can imagine not being able to comfort your distraught kids in a crisis (when they’ve seen you lifeless and grey wheeled from home and into an ambulance), or hugging them like it’s the last ever hug before you die or even being able to say, ‘it’ll be alright,’ or just saying ‘I love you?’

My whole recovery was based upon being home as a participatory mother to my kids, end of.  My running obsession, if they bothered to ask me, gave me the work ethic/work rate and the drive to achieve my ambitious goals.

Instead, the medics tried actively dampen or lower my goals constantly. My goals at the time they were to ‘return home as a proper full-on mum’ and to ‘run again’.  Perhaps, they thought I was in denial?  Well, yes, they were damn right, but that didn’t mean I didn’t have real ambitious goals to chase at the same time!

There were times when my opinions could have been canvased and views painstakingly gathered, so I could have been engaged with them about my continence training, or why my bowel movements on the PEG, were so embarrassingly explosive etc.

I couldn’t speak, yes, but I could have been given explanations of my treatment plans and communicated my basic demands. I never knew how and when my physio or swallow exercises would eventually lead to a certain level of independence for me. 

Instead during therapy, I would often be treated to the gossip from the therapists (or nurses) about their exciting though ‘normal’ things they did over the weekend, or hearing who was recently pregnant on the ward or which consultants they despised and why.

I often wondered if my therapists would pick up on my non-verbal clues about my distress over my excessive saliva production – and inadequate saliva management. If they had, then they may have been able to anticipate my anxieties and understand when I hand to gesture withy eyes ‘time-out’ from my precious rehab session?

So I wonder, was there insufficient GP, therapist and consultant training on them being able to assess patients real views, values, capacity or their willingness to share?

Indeed , do the length of consultations prevent proper patient engagement?

Does the referral system in the UK reduce a patients’ treatment options and discussions?  Are there enough administrative monitoring systems in the NHS for thorough patient engagement in practice? What, if any, are the barriers preventing therapists engaging properly with patients? Furthermore, how well do we evaluate improved (or not) patient outcomes after a patient engagement process?

I’m interested in your answers therefore, our next Tweetchat questions on 14th April at 16.00 will be on:

T1. Do you think stroke patients, or their carers, want to be engaged in managing their own health?

 

T2. What may discourage patients or their carers, being engaged?

 

T3. What skills or resources do patients or their carers need to have to be engaged in their health? Are those resources accessible?

 

T4. What barriers prevent therapists engaging with patients?

 

T5. How do we evaluate how well outcomes improve after engagement?

 

 

I do feel very strongly that proper patient engagement can and should, improve patient outcomes, but I do fear this new NHS buzz term will be nothing more than a feel good exercise.

P.S I did return to my kids and I did run  again! 

  

 

NEW EBOOK!

I Am Still The Same -Self help stroke recovery tool

Internationally published author ‘Running Free’ (Amazon) .  Speaker –   Founder Fighting Strokes

Kate’s story in 2 minutes




‘Would you like a cheese sandwich?’ #strokerecovery

Now be honest, are you so busy with juggling the balls of your own life – work, kids, partner, home, family etc – to be able or willing to care about for the needy and vulnerable people on our society?

 

Truthfully, this was perhaps a bit more like me pre-2010 – although I did a few charitable fundraising challenges and donated my skills to a local charity, before my own D-Day!

 

It may be the case that you care but struggle cope with others vulnerabilities, fragilities or mental health issues, so you steer a course away from the ‘said’ damaged individual?

 

Perhaps, you are selfish narcissist and are solely focussed in pursuing your own personal fortune and agenda? Sadly, there are quite a lot of people like that in the world.

 

Maybe, a your friend or relative who actually kindly visits you, but then is only able to offer patronising ‘sympathy’ or asks, ‘would you like a cheese sandwich?’

 

If you are lucky, a friend or relative will offer true ’empathy’. You know when a caring friend says, ‘I have absolutely no idea how you must be feeling right now, but I’m here to listen and support you, if YOU want.’

th8

 

But better still, is where someone offers you ‘altruism’.

So what is altruism you ask?

11076236_792291110846779_8723339376145888279_n

Well it was put perfectly by Matthieu Ricard in a recent TED talk. He said,

‘The wish for others to be happy and to help them find the cause of their happiness.’

 Helping others find a way to cope positively benefits not only the ‘recipient’ but will make the ‘giver’ equally as happy.

NEW EBOOK!

I Am Still The Same -Self help stroke recovery tool

Internationally published author ‘Running Free’ (Amazon) .  Speaker –   Founder Fighting Strokes

Kate’s story in 2 minutes

When stroke recovery doesn’t happen.

I’ve long been associated with the notion that stroke recovery is always possible, whether those improvements are small or large positive changes.

However, I have to admit that since meeting Kati Van De Hoeven in beautiful Finland last weekend, I’ve met someone who sadly hasn’t made very much physical improvement in twenty years, after her brainstem stroke and locked in syndrome diagnosis. Whilst she eats, writes books and blogs, plans meals, enjoys retail therapy – if it involves boots and bags – moves her head and eyes very effectively, but she is unable to do much else.

11010300_10205098791142885_5156708741920875792_n

1723789_10205098793782951_530707933591279859_n

Kati is now forty years old and yes, she suffered her illness at the shockingly young age of nineteen and a half, in her prime and as a successful model living in LA. It would be fair to say that she looked like a brunette version of Cindy Crawford! 



Her phenomenal blog can be read here. Kati has been my second heroine (my first being Ms Christine Waddell) since I came across her blog on Facebook early last year.  Her unique approach to life inspires me and quite frankly stops me immediately if I ever start to go down a self-pitying track about everything I’ve personally lost since 18.09 on 7th February 2010.  You really are either a glass half full or half empty kind of person and I’m definitely, and mostly, the former!

As I approached her wheelchair, I was stunned by her natural beauty, impeccable dress sense, sublime makeup, beautifully coiffed blond hair and not to mention her fabulous knee-length, tanned, suede boots! (A girl after my own heart in far more ways than one!)  I quickly realised that Kati shares not only my annoying emotional lability, but a smutty sense of humour, obsessive traits, scary determination, stubbornness and sense of informality. Yeah, I was the ugly sister who was perhaps separated at birth!

11046422_10153719632156029_4596887875322855964_n

Her husband Henning, yes husband, who she met only 4 years ago cleverly and tenderly stands by to interpreted her eye movements, on what was an invisible e-tran board. You see, they have honed their communication system between them so well, that Henning doesn’t even need to use the physical transparent communication tool at all now.  Now that’s impressive! Kati shows in no uncertain terms that a long term Locked In Syndrome diagnosis does not necessarily equal a poor quality of life or none existent emotional well being.

11066561_10205116728351304_3313883478349284333_n

I was there with a documentary film crew to ask her questions about her former, exciting life, her illness twenty years ago, how her and her parents each coped and perhaps learned to accept and let-go of their anger, her  relationships with friends, how she met her loving husband, her Christmassy wedding day, what her hopes for the future are and of course what the unique Finnish word – SISU – means to her.

10953165_10205107748366810_7161666490845880978_n

If you are not familiar with the word SISU, all I can say is that Kati epitomises it perfectly!

According to Wikipedia SISU is:

‘Sisu is a Finnish word generally meaning stoic determination, bravery, resilience,[1][2] perseverance and hardiness,[3][4] expressing the historic self-identified Finnish national character. Sisu is about taking action against the odds and displaying courage and resoluteness in the face of adversity. Deciding on a course of action and then sticking to that decision against repeated failures is Sisu. It is similar to equanimity, with the addition of a grim quality of stress management. The pertaining adjective is sisukas, “having the quality of Sisu“‘.

Kati is all these things and far more. She and Henning are quite simply incredible human-beings who deliberately choose a life of altruism and optimism because frankly, it feels better. That doesn’t mean they don’t have tough times now, because sadly there is seemingly no end to shit times for some unlucky people.

During our visit, I couldn’t get out of my mind, something that I found so incredibly moving, when I spoke to Kati’s dutiful and loving mum. She said,

‘Now, I can die.’

She said this after observing her daughter so happily married with her son-in-law, Henning, something, I’m sure, she could never have imagined, years earlier.  As a mother myself (and it was Mothers Day yesterday), I  found this thought deeply distressing.

You are probably thinking what they do together?  Well, they sum up true, basic happiness which I found both incredibly moving and humbling.

A happiness where you don’t need expensive objects, tablets or phones or ambitious aspirations, flamboyant holidays and houses, or that perfect job, just simple, old fashioned unconditional love.

They share a marital bed, they write their books and popular blogs during the bleak winter months, they share the joy of having their dog ‘Happy’, they listen to the radio, take romantic walks as Henning pushes her wheelchair during the milder spring and summer months, they take short breaks (they are shortly off to Latvia), they listen to Caribbean music and Henning often prepares and cooks Kati’s countless recipes! (She loves cooking.)

11066516_10153719648471029_846007948013021522_n

Our Finnish hosts were amazingly kind and generous and our young filmmakers certainly enjoyed their generous, home-cooked meal and dessert! Not something they are used to as recent Graduates!

As we prepared to leave their relaxing, welcoming home to take the two hour journey back to our hotel, I couldn’t help thinking that sadly beautiful Kati hadn’t made very much physical stroke progress in twenty years. Although I do wonder whether she would have made more physical progress in 2015 as opposed to 1995? Especially with advances in stroke rehabilitation therapy, research and treatment plans?

However, what is true is that her stroke recovery has not just been about her trying to overcome her enormous and catastrophic physical difficulties, but her only-to-be-expected psychological and emotional issues that followed.

We must never lose sight of the emotional (and cognitive) difficulties relating to stroke – from the apathy, the depression, the isolation, the post traumatic stress disorder, the withdrawal, the low-confidence and low self-esteem, etc.

Kati has journeyed through her loss cycle – from the denial, to anger, to depression and to acceptance – and unbelievably found her current happy, truly inspirational state just 3 years after her life changed beyond belief.  It would be some considerable years after that, when she would meet her soul mate, best friend and true love of her life, Henning.

As far as I’m concerned, that is actually an incredible stroke recovery!

We are looking for distributors for our ‘Locked-In Forever?’ documentary if you are interested, please email me.

NEW EBOOK!

I Am Still The Same -Self help stroke recovery tool

Internationally published author ‘Running Free’ (Amazon) .  Speaker –   Founder Fighting Strokes

Kate’s story in 2 minutes

Technology & #strokerecovery tweetchat – your views!

What an amazing tweetchat! Our engagement with you doubled from last month, we all wrote 559 tweets, had 50 participants, received 726,202 impressions, with key influencers were @fightingstrokes, @stroketattler, @dailycaring & @sissstroke.  No wonder my fingers were on fire!  Thank you v much, it was fun and informative.  We were absolutely delighted to receive a tweet from the @natlstrokeassoc (see below)   So here’s what I gleaned from our #strokerecovery & technology tweetchat tonight but feel free to study the symplur #strokerecovery transcript if you like. We asked you:T1. What technology do you use/offer in #strokerecovery therapy? You said:

  • Electrical stimulation albeit it was offered tom slowly in the community at 11 months
  • Scheduling apps to coordinate family visits
  • Apps to help with aphasia and alarms to take medication
  • Wii gaming technology for rehabilitation which also involved your children, though it doesn’t work for everyone.
  • Blogging in itself helped keep the brain active and was used in #strokerecovery
  • @natlstrokeassoc – ‘Wii, Constraint Therapy, Bioness, WalkAid, Mobile apps for aphasia, Myopro, sling supported treadmills.

T2. Is there some technology that you would use? Is it just about cost?

  • The IREX system ie, uses immersive video gesture control technology to place patients into virtual sport or gaming environmentshttp://www.gesturetekhealth.com/products-rehab-irex.php
  • Transcranial electromagnetic stimulation for aphasia
  • Electrical stimulation products
  • We would use basic products which would be the basis for more complex based activities

T3. What the main barriers to treating stroke patients?

  • A lack of knowledge of available products
  • Costs/funding perhaps leasing arrangements is one solution?
  • Lack of SALT therapist time.
  • Mood, time, mood, depression, fatigue, therapy time, muscle tightening and available technology
  • Insurance Companies not applying the ICF model. Ie, The ICF classification system focuses on human functioning and provides a unified, standard language and framework that captures how people with a health condition function in their daily life rather than focusing on their diagnosis or the presence or absence of disease.
  • Huge lack of technology-based research for aphasia and cognition.
  • Lack of evidence-based research for cognitive rehabilitation.
  • We don’t share information enough with patients & families at home.
  • Families are overworked with assisting with daily living activities. (Teasell)
  • Families are crucial and there is again a lack of clinical evidence.
  • Clinicians and academics must work better together. Things get lost in translation.
  • Patient input is vital at every stage.

th68N3ZQ1V  T4. Can we overcome those technological intervention barriers? Is it not just cost?  

  • Yes cost and funding are issues, need lease agreements and insurance company education?
  • Computer-based or web-based therapies to help aphasic patients.
  • Overcome fatigue with early diagnosis, pharma drugs, psychological counselling CBT talking therapy, physical exercise.

  I’m certainly going to find out more about the CogWatch product which helps with daily living activities. This is CogWatch is a European Commission funded research project whose aim is to enhance the rehabilitation of stroke patients, a third of whom will experience long term physiological and/or cognitive disabilities. A significant proportion of these patients can suffer from Apraxia or Action Disorganisation Syndrome (AADS) which, among other symptoms, is demonstrated by the impairment of cognitive abilities to carry out activities of daily living (ADL).   We failed on tweeting ideas based on finding out about evidence-based technology and I think we should share this in a tweetchat in the future.  I’m going to sign off and feed my hungry kids now but I’ll leave you with this poignant tweet I received that,   ‘People want to feel ‘normal’ & to do things for themselves.’Banksy-What-Next