Caring for Someone with Severe & Very Severe M.E.

 

 

 

·       Severe ME and Very Severe ME constitute a major challenge for a patient given the symptoms and severity and lack of appropriate home care, healthcare, and management.

 

·       Severe ME and Very Severe ME constitute a major challenge for a carer given the symptoms and severity, the lack of guidelines, education, knowledge and supports. 

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·       The patient requires the total commitment of one doctor, who is willing to make home visits on a regular basis.

 

·       The patient requires consultant support when they cannot leave their home.

 

·       There is a need for a clinician who understands the complexity of ME, especially Severe ME because ME affects all systems and organs. We must prevent the attempts of one speciality or another to address one aspect of a presentation or ‘a symptom’ to avoid further imbalance or a further experience of ‘nothing to see here’ and dismissal.

 

·       Mismanagement can result in permanent harm or even death of the severe ME patient.

 

·       The patient needs to be protected from anyone who does not understand the seriousness of Severe ME.

 

·       There is a need to improve both undergraduate and postgraduate medical training in this area, and to provide greater resources for the patient population and community.

 

·       There is a need for education about ME, in particular about Severe ME among Consultants/Specialists

 

·       There is a need for education throughout hospital services given that Neurologists, Cardiologists and Rheumatologists etc. largely dismiss the aspects of ME which sit within their specialities as they do not meet the threshold for intervention according to their clinical guidance.

 

·       The ME Community needs a HSE ‘Champion’ or even anyone with an interest in ME that the HSE can identify.

 

·       While it may be understood that the person with severe, very severe, and profound ME should receive advanced medical care outside of the hospital setting, there is much greater need for a depth of understanding and acceptance of the significance of the patient having to attend a hospital. Hospitalization may be necessary when patients need tests and treatment, and when they deteriorate and cannot receive essential medical care at home.

 

·       Symptomatic treatment for pain and sleep problems as well as other manageable symptoms is worthwhile.

 

·       Tube feeding is indicated when the patient has problems with eating and drinking.

 

·       Nursing at home is usually far preferable to admission to a busy general hospital.

 

·       The patient needs a carer who fully understands about Severe ME and the patient in order to be able to care for them.

 

 

Caring for someone with Severe & Very Severe ME at home or in a Nursing Home

'When caring for someone diagnosed with Severe ME great wisdom and skill are required.

 

I cannot stress enough how you HAVE to be fully aware just how seriously ill the person diagnosed with Severe/Very Severe ME is and respect that in ALL you do.

The range of complex physical symptoms and system dysfunctions affect the 'how' and 'when' a carer interacts with the person; getting it wrong can lead to enormous harm!

To care safely and effectively for someone diagnosed with Myalgic Encephalomyelitis, carers absolutely must:

1. Be aware how seriously physical ill the person is.

2. Always trust and listen to the person and their reaction.

3. Be sensitive so that they can gently approach and offer care to the person without causing distress or deterioration.

4. Adopt a moment - by - moment, flexible approach to care, where the carer is willing and able to wait patiently and return later.

The response of people diagnosed with Severe ME is not always predictable; often the opposite rather than the expected occurs.  

This must be FULLY understood by the carer.

 

5. Be aware that it might not be possible, in any one moment for the person to receive the help they need, because they are so physically ill and cognitively impacted.

In other words, the carer must be able to recognise that there may be a moment when the person can or might tolerate an intervention and other times when that simply will not be possible.

Even if an intervention is not possible at one moment, it may still be possible at some other point in time, for there are fluctuations of experience of symptoms within the general chronicity of the illness.

Any task or interaction needs to be at the pace that is tolerated by the person, never imposed by the carer; TIMING IS KEY.

 

6. Be aware that a person diagnosed with ME, particularly the most severely affected, may have complex hypersensitivities to the environment. Any action that might result in triggering these or other hypersensitivities, can lead to serious exacerbation of symptoms, make the person’s experience intolerable and/or cause long term deterioration.

7. Be aware that the person diagnosed with ME may have severe cognitive dysfunction, may not be able to write or read , speak, understand or cope with questions.

A very gentle approach is essential in caring for people who have Severe/Very Severe ME.

8. Be aware of the need to be quick and efficient, to minimise risk of deterioration or distress, yet at the same time, being very quiet and careful.

Remember how YOU DO A TASK is as important as WHEN you do a task.

 

9. Understand that people diagnosed with Severe ME can easily over exert themselves, trying to get even their most basic health or care needs met and as a direct consequence decline.

10. Have integrity, wisdom and patience. Any improvement or response may be extremely small, almost invisible perhaps to the carer, yet the person diagnosed with Severe/Very Severe ME may discover extraordinary benefit from what might seem like a small, even insignificant outcome.

And always remember that great wisdom, focus and skill are required.' 

 

- by Greg Crowhurst

 

 

Resources re Caring for People with Severe ME by Greg Crowhurst
 

Caring for Someone with Severe ME by Greg Crowhurst: https://stonebird.co.uk/care.html 

 

Greg Crowhurst's Stonebird website: https://www.stonebird.co.uk 

 

Caring for ME by Greg Crowhurst: https://stonebird.co.uk/CARE/index.html 

The Basic Principles Behind Severe ME Care: 

THE BASIC PRINCIPLES BEHIND SEVERE ME-AWARE CARE : (carersfight.blogspot.com)

 

The Paradox of Caring for People with Severe ME - Why a Moment Approach is Necessary: here

 

 ‘100 things you cannot do with Very Severe ME’ by Greg Crowhurst here

 

 

 

When it comes to caring in the home there is a need to learn and fully understand about Severe ME and the patient’s specific set of symptoms in order to be able to care for them in the best possible way.

One of the best experts available when it comes to caring is Greg Crowhurst. A registered nurse, who has devoted his life for over 20 years to caring for his wife Linda who is very severely ill with ME. Greg is also a musician, author, and expert ME carer advisor.

What Linda said about Greg before the ‘Nurse of the Year’ award ceremony in 2015:

“Greg, is a wonderful, kind, compassionate, enthusiastic, determined and committed man, who has dedicated his life to loving me despite me having the most horrendous and devastating neurological disease in one of the most severe forms.

This in itself is incredible, seen from my perspective alone. Not only has he loved me and cared for me for over two decades and not abandoned me, as many others sadly find, in similar circumstances, but he has also dedicated his life to speaking up for all of us who have this misinterpreted, misrepresented, mistreated disease, adamant that the truth will be told in order to get better care and medical services provided.”

 

 

   Greg has authored several documents, notes and books about ME, many which aim to assist the carers of people with ME. Let’s take a look at some of his cache of resources for carers.

 

-        Greg answers some questions in a post about the difficulties posed by ordinary, everyday, taken for granted things for people diagnosed with Severe or Very Severe ME via this link here

-        The Carers Notes by Greg Crowhurst re issues of Noise, Light, Touch, Chemical & Movement Sensitivity in Severe/ Very Severe ME that carers, including medics need to be aware of are very helpful, see here

 

 

-        Very Severe ME Underlying Principles of Care: link here

 

 

 

 

-        If you have ME, in particular Severe/Very Severe/Profound ME, or if you care for someone with ME, and have not yet come across the ‘Stonebird’ blog by Greg Crowhurst about caring for someone with Severe/Very Severe ME please see his highly recommended blog, as well as Greg’s various books for Carers, in particular his latest book ‘More Notes for Carers’.

Link to Greg’s blog 'Stonebird: The Lived Experience of Severe Myalgic Encephalomyelitis (ME)' here

-        Greg talks about caring for someone with ME based on his own experience and launches his Carers Book – ‘Caring For ME’, see recording here

 

 

-        Greg has poured all his knowledge & experience of Severe ME into his blog and books including his final book ‘More Notes for Carers’ to give insight to others - family members, friends and all carers of people with Severe/Very Severe ME- on how best to approach and carry out the caring. This latest book tackles practicalities and helps carers and sufferers alike in how to live with this disease, and highlights in great detail the extraordinary levels of commitment and sensitivity required from carers.

Greg’s book throws light on aspects of Very Severe ME that most people are unaware of e.g. the frequency of intermittent and often long-lasting paralysis in this illness. This is an invaluable set of notes for those caring for people with Severe/Very Severe ME. The carer prepared to deal with the horrendous reality of those with Very Severe ME will find this book very supportive.

'More Notes for Carers' is available in print form as well as Kindle (Amazon). See details

“If you have the privilege to care for someone with ME then you really do need to be the best carer you can be. You have to develop an extra special level of awareness, one that is not obvious one that requires commitment and boldness of heart”

~ Greg Crowhurst ~

 

 

 

“You have to train yourself to notice things that you would not

normally notice. The person with Very Severe ME is not

experiencing the environment in the normal way that you are.

It is hostile and assaulting to them.”

~ Greg Crowhurst ~

 

 

 

 

 

 

 

Huge thanks to Greg & Linda Crowhurst for your very important notes and information about caring in severe ME.