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

Self management and #strokerecovery tweetchat 10th Feb 5pm GMT

This months’ tweetchat should be very interactive judging by the global interest so far!

We are discussing these 4 central themes with our hashtag #strokerecovery

T1: What do you think about self-management after stroke?

T2: How relevant is self-management after stroke? Do you think that stroke survivors can manage stroke by themselves?

T3: What preparation and support do survivors need if they are to self-manage stroke?

T4: What are the barriers to self-management after stroke?

See you there! 5pm GMT 10.2.15!

So how do I get INVOLVED with the 2nd tweetchat @Fightingstrokes @Stroketattler ?

 

  1. Have a think about what #strokerecovery means to you.
  2. Then click on http://www.tweetchat.com
  3. Enter the hashtag #strokerecovery and click GO
  4. Click Authorise Tweetchat – after inputting your @Twitter handle & password
  5. Then start by saying ‘Hi at5pm GMT on 10th February & tweet if you are a #stroke patient, carer, clinician, doctor, charity or researcher. But REMEMBER to always include the all-important hashtag #strokerecovery on all tweets!
  6. We will try to respond to your questions or comments sequential especially if you write which tweet you are responding to eg T1, T2 or T3 etc, hopefully our #strokerecovery community can not only be better informed but crucially influence #strokerecovery for others.
  7. Towards the end of our hour long Tweetchat, we will call for your ideas on future #strokerecovery topics to discuss, share and influence.
  8. We will also ask for any recommendations of key guest bloggers to invite at the end of our 2nd Tweetchat on 10 th February 2015 at 5pm GMT.
  9. Finally, we will tell you when our next Tweetchat will be.
  10. Enjoy we are so excited @FightingStrokes & @StrokeTattler !! (You can always follow us in the meantime?)
  11. Thanks @kateallatt

     

    NEW EBOOK!

    I Am Still The Same -Self help stroke recovery tool

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

     

#strokerecovery tweetchats 4pm London Time 13th January 2015 – Here’s why……..

Stroke is global healthcare problem. In developed countries, it is the third or fourth most common cause of death.  However as 80% or more people now survive the initial stroke, the largest effect of stroke is through the long-term residual difficulties, daily living activity limitations and reduced social participation/interactivity.  Stroke is the main cause of adult disability.  Physical and emotional  impairments from stroke affect the whole family, not just the person with stroke.

Most stroke survivors and their families want get on with the rest of their lives after stroke —in other words their goal is #strokerecovery. This doesn’t not mean the stroke survivor or family will fully recover like they were pre-stroke. Rather, our #strokerecovery tweetchat aims to practically advise, help and inspire people to make progress in the daily living activities, socially and professionally.   This includes motor, communicative, cognitive and emotional recovery. In other words, it is possible for  stroke survivors and their families can live satisfying lives with impairments.

What is #strokerecovery ?

#strokerecovery is a vibrant community of people interested in exploring stroke recovery in for themselves and in stroke recovery. Sharing, learning & improving from each other.

Our first chat is held on 13th January 2015 at 4pm London time.

Why #strokerecovery ?

Fighting Strokes is a global patient advocate charity which was founded primarily to help inspire and support anyone affected by stroke. We try to help people make progress improvement both physically and emotionally. We also have a special interest in inspiring families and patients affected by brainstem stroke and diagnosed with locked in syndrome to improve.  See here Fighting Strokes.

Who takes part in #strokerecovery ?

Anyone and everyone delivering and receiving health care who is interested in open conversation to help improve quality, access, value and effectiveness of stroke recovery. This includes: patients, caregivers, patient advocates, healthcare professionals, not-for-profit health organisations, educators, heath content providers, health institutions, health administrators, health systems and networks, government and health policy makers.

Join us.

How to take part in #strokerecovery tweet chats.

  1. Get a Twitter account!!
  2. Go to twubs.com or tweetchat.com.
  3. Enter the #strokerecovery in the box that says “Enter a hashtag” and press Enter.
  4. Sign in to participate in the chat. (note the hashtag #strokerecovery will automatically be added to your tweets.
  5. Review this week’s topics.
  6. Be online at 4 pm London time on the 13th of each month.
  7. Chat!

Our next tweet chat will discuss:

T2: What the strengths are in our current #strokerecovery systems?

T3: What are the weaknesses in the current #strokerecovery systems?

T4: What should we concentrate on in the initial Tweetchats? 

Tweet Chat Etiquette

  1. At the beginning of the Tweetchat or when you join, briefly introduce yourself.
  2. Please use #strokerecovery in your tweet.
  3. The Tweetchat will be for active for 1 hour, but you can add to the Tweetchat transcript by including #strokerecovery in your posts between chats.
  4. The moderator will introduce the questions. Please respond to the current questions.
  5. You can respond and add to others posts by replying or favouring.
  6. Be kind to others and have fun.
  7. Suggest future tweet chats if you like ?

We are including several academic papers for your information. They include evidence based reviews on motor, communication, and cognitive recovery and Aura Kagan and colleagues (2008) framework for “Counting what Counts” in #strokerecovery.

Motor recovery

Peter Langhorne, Fiona Coupar, and  Alex Pollock (2009)  separated motor recovery into three areas:

  1. Upper-limb movement and function/arm and hand function;
  2. Lower-limb movement and function /Walking ability
  3. Balance
  4. Mobility (which combines upper-limb function, lower-limb function, and balance to enable normal movements) also been defined as
    1. ‘activity of moving from place to place, generally by walking or using a wheelchair’ (Busman & Stam, 1998)’
    2. ‘an individual’s ability to move about effectively in his surroundings’ (The WHO International Classification of Functioning, Disability and Health, 2001); or
    3. ‘Stroke- mobility’ –‘Out-of bed physical activity, which may include transferring on or off the toilet, sitting out of bed, standing and walking’ (Bernardt et al., 2009).

Communication recovery

Koenig-Bruhin and colleagues (2013) note that this is mainly referred to as aphasia recovery (language), but includes many different functions, such as verbal communication and activities involving daily life and self-organisation.

The vast majority of aphasia patients have the potential to recover, if they do not suffer from dementia. In the acute phase, different types of therapy have their merits, including group therapies or treatment involving families, but they:

  • must be adapted to the type of aphasia;
  • must be adapted to the patient; and
  • often require a minimum of intensity (between three sessions per week and once a day during the acute phase) and of duration (at least three months).

Focused interventions in the chronic phase have also demonstrated their effectiveness.

Cognitive recovery

Many survivors of stroke complain about cognitive impairments, such as attentional impairments, diminished concentration, memory loss, and mental slowness (brain fog) yet Loetscher & Lincoln’s (2013) review of cognitive rehabilitation concluded that effectiveness of cognitive rehabilitation remains unconfirmed.

Emotional recovery

‘If the part of your brain that normally controls your emotions becomes damaged by a stroke, the result can be a change in how you think, feel or behave. Don’t be surprised if you feel anxious, depressed, frustrated, angry or bewildered. Emotions tend be depression, anxiety, emotionalism, personality changes and anger.’ The Stroke Association. We can try to help our emotional #strokerecovery by:

  • Letting go of rejection
  • Avoid ruminating
  • Turn failure into something positive
  • Avoid letting guilt linger
  • Using positive affirmations to counter low self esteem *

Counting what Counts

Focus groups with a range of stakeholders including health professionals, stroke survivors, and their families highlighted the need to focus on real-life outcomes. They indicated that existing classifications and models were not necessarily accessible and/or user friendly for clinicians, researchers, policy makers, funders, and those living with aphasia.

Tweet Chat Timezones:

Add to calendar

Location Local time Time zone UTC offset
Edmonton (Canada – Alberta) Tuesday, January 13, 2015 at 9 :00:00 AM MST UTC-7 hours
London (United Kingdom – England) Tuesday, January 13, 2015 at 4 :00:00 PM GMT UTC
Perth (Australia – Western Australia) Tuesday, January 13, 2015 at 12 :00:00 am AWST UTC+8 hours
Corresponding UTC (GMT) Tuesday, January 13, 2015 at 16:00:00

Check World Clock for the corresponding times for your location: http://www.timeanddate.com/worldclock/

By @kateallatt

NEW EBOOK!

I Am Still The Same -Self help stroke recovery tool

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

References

Bussmann JB, Stam HJ. Techniques for measurement and assessment of mobility in rehabilitation: a theoretical approach. Clin Rehabil 1998;12:455–64.

Bernhardt J, Thuy MNT, Collier JM, Legg LA. Very early versus delayed mobilisation after stroke. Cochrane Db Syst Rev 2009, Issue 1. Art. No.: CD006187. DOI: 10.1002/14651858.CD006187.pub2

Kagan, A.Simmons-Mackie, N.Rowland, A., (…),Threats, T.Sharp, S. Counting what counts: A framework for capturing real-life outcomes of aphasia intervention  Aphasiology 2008; 22(3): 244-53

Koenig-Bruhin, M.  Kolonko, B.At, A.Annoni, J.-M.Hunziker, E.   Aphasia following a stroke: Recovery and recommendations for rehabilitation  (Review) Schweizer Archiv fur Neurologie und Psychiatrie 2013; 164(8):292-298

Loetscher, T.Lincoln, N.B.   Cognitive rehabilitation for attention deficits following stroke.  (Review) The Cochrane database of systematic reviews 2013; 5: CD002842

* http://articles.mercola.com/sites/articles/archive/2013/08/15/emotional-pain-recovery-tips.aspx – As the featured article reported, Guy Winch, author of Emotional First Aid: Practical Strategies for Treating Failure, Rejection, Guilt and Other Everyday Psychological Injuries, recently shared five tips for healing your emotional pain.

A Brainstem Stroke? 6 tips to spot one. @fightingstrokes

Brain stem strokes can be difficult to diagnose and complex,  according to Dr. Richard Bernstein, assistant professor of neurology in the Stroke Program at  Northwestern University in Chicago.

Brain stem stroke can cause:

  1. Vertigo
  2. Dizziness
  3. Double vision
  4. Slurred speech
  5. Severe imbalance and
  6. Decreased level of consciousness.

So what does the brainstem do? Well it controls all basic activities of the central nervous system: consciousness, blood pressure, and breathing. All the motor functions are controlled by it. It’s like our body’s control box.  Brain stem strokes can impair any or all of these functions. “These complications are often predictable and, with prompt recognition, can be treated,” Dr. Bernstein says. “If complications are dealt with quickly, there is a good chance of recovery.”

More severe brain stem strokes can cause Locked in Syndrome –http://cirrie.buffalo.edu/encyclopedia/en/article/303/ a condition in which survivors can move only their eyes.

“It is important that the public and healthcare professionals know all of the symptoms of a stroke and are aware that some brain stem strokes heave distinct symptom,” Dr. Bernstein says. “Patients need to receive treatment as soon as possible to promote the best recovery.”

Like all strokes, brain stem strokes produce a wide spectrum of deficits and recovery. Over time, these symptoms could result  in mild to moderate and short to long term difficulties.

Risk factors for brain stem stroke are the same as for strokes in other areas of the brain: high blood pressure, diabetes, heart disease, atrial fibrillation and smoking. Like strokes in other areas of the brain, brain stem strokes can be caused by a clot or a hemorrhage. There are also rare causes, like injury to an artery due to sudden head or neck movements. This was my actually the cause of my injury.

“Dramatic recovery from a brain stem stroke is possible,” says Dr. Richard Harvey, director of stroke rehabilitation at the Rehabilitation Institute of Chicago. “Because brain stem strokes do not usually affect language ability, the patient is able to participate more fully in rehabilitation therapy. Most deficits are motor-related, not cognitive. Double vision and vertigo commonly resolve after several weeks of recovery in mild to moderate brain stem strokes.”

 

 

Resources for Locked-in Syndrome

Running Free: Breaking out from Locked in syndrome Allatt/Stokes http://www.amazon.co.uk/Running-Free-Breaking-Locked-In-Syndrome-ebook/dp/B008G5LRZS

 

untitled4

 

 

Locked In: A Young Woman’s Battle with Stroke. Mozersky, Judy. The Golden Dog Press, 1996. ISBN 0-919614-64-7.

The Diving Bell and the Butterfly. Bauby, Jean-Dominique. Random House Value Publishing, 1995. ISBN 0-517409-31-3.

 

Information Sources

Adapted from “Surviving a Brain Stem Stroke”, Stroke Connection January/February 2003 and http://www.strokeassociation.org/STROKEORG/AboutStroke/EffectsofStroke/Brain-Stem-Stroke_UCM_310771_Article.jsp#mainContent

<a href="

NEWS FLASH!!! New book November 2014

https://strokerecoverytips.files.wordpress.com/2014/11/img_2760.jpg”&gt;IMG_2760.JPG

Do we know the locked in syndrome prognosis in the 1st weeks weeks after the illness?

The brain stem controls all basic activities of the central nervous system: consciousness, blood pressure, and breathing. So after a brainstem stroke some patients will be formerly diagnosed with Locked In Syndrome. This doesn’t necessarily mean a death sentence for the individual which results in the fatal pneumonia, like the poor chap in depicted the film – The Diving Bell & Butterfly.

Over time, these symptoms could result in being mild to moderate and short to long term. I believe it is possible to positively influence the future patient outcome and prognosis, especially if therapeutic therapy is offered early in ITU (as opposed to only passive therapy), the health professionals remain open-minded about the improvement possibilities early on, the loved-ones are proactive and informed, but most importantly the patient is physically able to try to concentrate cognitively to work hard on improving.

If you don’t believe me why don’t you read this…

‘Hi Kate!

I’m approaching you on behalf of my boyfriend, or husband to be actually. Hope you have time to read my message!

My name is Rikki, I’m 29 and from Finland. Last summer, 5th July to be exact, my boyfriend Tommi suffered a massive brain stem stroke. Only symptoms he had were a headache day before and nausea. When we went to ER doctors suggested Tommi might be suffering from vertigo. CT scan revealed that it was not the case. Tommi basilar artery was completely clogged. Doctors tried to dissolve it but failed, and after that they inserted a microscope netlike tube structure inside the vein to keep it open. For a moment it seemed to help, but Tommi did not wake up after the operation and new CT scan showed that the vein had clogged again.

He was rushed to a new operation and doctor told me that he had to think very hard what he would do, or was there anything left to do. After some painful hours doctor managed to dissolve the clog a bit so that Tommi survived. When he eventually woke up however he was in complete locked-in state.

I saw that ‘Tommi’ was present when I looked in his eyes. ‘Tommi’ has two boys, X 12 and Y 10 who are really close to me, from previous relationship, it was Alex who asked Tommi to blink twice if he hears us and means yes, and blink once if he means no. After couple of weeks the alphabetic board was introduced. I became quite fast speller, but then again nobody else, including nurses and doctors did not know how to use it. First weeks were really hard, ‘Tommi’ had sepsis and pneumonia but survived. When he’s condition was stable he went to a rehabilitation center in Helsinki. It has a good reputation they treat people with spinal cord injuries, brain damages and also stroke survivors.

Rehabilitation lasted 6 months and I was with ‘Tommi’ the whole time, every day, trying to help him as much I could.

‘Tommi’ is very determined and stubborn person. He says he is going to walk by next autumn. This is of course not what doctors or therapist told him. When we went to rehab ‘Tommi’ had regained some movement to his head. Rehabilitation concentrated in the beginning to improving communication. All sorts of buttons and switches were introduced to Tommi so that he could use Computer, communicator and also electric wheel chair with them. Tommi wrote to me that they could all be thrown into trash can because he is going to speak and move around in a wheelchair using his own hands. I was in a minority believing that.

Today Tommi speaks and uses his hands to move around in a wheelchair. His tracheostomy was removed in January. He is going to get electric aids to his wheelchair that help him when his arm muscles tire. His speech is still sometimes blurred by phlegm that was a real issue in the beginning, but that is a small problem. He has activity in his muscles all around the body, they are weak of course but still there’s action. Therapies still go on and were living in a temporary apartment at the moment. Our own home is being renovated so that Tommi can move around there in the chair. We are planning to get married next autumn.

I would like to thanks you for telling your story. (Running Free Amazon http://www.amazon.co.uk/Running-Free-Breaking-Locked-Syndrome-ebook/dp/B008G5LRZS/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=&qid=) I found your web page – http://www.fightingstrokes.org/ – when I tried to look for information about locked in syndrome. When you google locked in syndrome and recovery there is not a lot that comes up. But your story was there and it gave us hope! I told to Tommi that it is possible to recover, and he is proving me right. I did not talk to him about all the other horrible stuff I found while googling. And I did not think about it myself, instead I thought about your story. So thank you, on my and Tommi behalf! You are very strong and inspirational person! I wish you all the best and hopefully spring is as sunny there as it is here there too!

Yours, Rikki

Ps. If you have time, it would nice if you could write something to Tommi as a sort of surprise.. I almost forgot where could I safely buy your books? They are not sold in Finland!

The moral of the story is that there is always…

hope

Have you been to ‘Hell’s gates?’ #InvictusGames #strokesurvivor

Watching the truly remarkable Invictus Games Prince Harry has so brilliantly pioneered, made me think, ‘bloody hell those ex-servicemen and women have also been to Hell’s gates and back, big time.’

Everyone has tough times but when you hear of the physical and emotional traumas these people have suffered, you can only imagine (in your worst nightmare), if we really understand what a tough life really is? Should we put ourselves more out for others?

Do we moan unnecessarily in life? Should we be more grateful for what we have each day?

This is ABSOLUTELY not to say people can’t OR shouldn’t suffer mental illness for lesser experiences at all, as we all have different coping thresholds, but we must celebrate the inspirational way these people choose to cope with their massive set-backs.

In fact to prove that, I am now so passionate about mental health that I took part in my own Mrs Doubtfire challenge recently.

IMG_2739.PNG

I can’t imagine the fear, the loss, the physical pain, the post traumatic stress, the loneliness, the isolation, the grief, the loss of all the dreams you once had, the pain of rehabilitation, the redefining yourself, the loss of friends, etc.

Writing this list I realise that these feelings are quite normal for stroke survivors to have too. We really need to do more to help everyone deal with their setbacks and learn lessons from these inspirational athletes.

When I hear how a man only narrowly escaped being zipped up dead in a body-bag in Afghanistan after one final pulse check from a diligent doctor, or I hear of the only ever man to survive being shot through both sides of his brain, it makes me feel grateful and blessed to be alive.

I salute you Prince Harry and your organising team! Very, very well done! Long may the games continue!

Will power, self-belief and having an ‘I Can’ attitude, will help all us wounded individuals.

.

IMG_2741.JPG