Online Recovery Programme Session 33
Welcome to your Practitioner Recommended Session
Support Dynamics and Recovery
Before you get going, watch this short video message from Elaine.
Follow the link to listen to the audio version of session 33:
All About Carers and Support
'The cure for all ills and wrongs, the cares, the sorrows and the crimes of humanity, all lie in one word ‘love’. It is the divine vitality that everywhere produces and restores life.’
- Linda M. Child.
Welcome to Session 33
This week we are going to look at something very close to home, in fact it's all about identifying the right kind of support so that recovery is the natural outcome.
This may seem like a bit of a no-brainer. When you are unable to do what you can usually do, then any kind of support is helpful. Well you would think so, wouldn’t you?
However there are no real guidelines, are there? You and your family or supporters are probably just muddling through the best you can. We know that is what we did and only with the benefit of hindsight realised that with the right guidance, we could have made things a bit better for all concerned.
So today we come straight from the horse’s mouth and hear from ‘carers’ themselves and learn what it feels like from the carers' point of view and what they feel would have been useful to know.
From here on in we will call them supporters, because a support is there until you no longer need it, whereas the word carer has so many long term connotations.
So how much support is enough? When is it too much? What do all concerned need to guard against? What can a recoverer do to ensure that a supporter has what they need?
This session is most effective when you, as a recoverer, share the information with the people who are helping you. Then you can democratically implement any changes that you need to for your own recovery.
The last thing we want to do is upset those amazing angels in our lives that care for us and are rooting for us to get better.
A Mum's Perspective
The worst thing was when my daughter was in bed for 6 weeks - at 17 years old that’s really not a good place to be. She was so weak I had to carry her to the bathroom. I was working at the time and soon realised I couldn’t be a part time mum when she was so ill, so I had to pack up work to look after her.
M.E. or CFS wasn’t recognised back then as much as it is now (and even now it’s not much different). I remember feeling totally alone and I had nobody to talk to or help us. The doctors didn’t understand it, and days, weeks and months went by and the worse my daughter became.
Just seeing her lying there, day after day, was heart-breaking for me and my husband. All I wanted to do was take it all away; I would have taken her place if I could have, so she could be a healthy teenager. I remember the long nights of crying myself to sleep, as I felt totally useless.
The other thing that was really hard was that none of her friends supported her, they just didn’t understand. She looked ok when she did have a little energy to see them. So I became her best friend as well as her mum. If you do have special friends that are supporting you through this, then cherish them as you are very lucky to have them!
And it really shows you who your good friends are when you are going through something like this. Eventually Kelly gained her strength back over the months and years but I still felt useless most of the time and that feeling never went away. Our whole lives revolved around her illness and that carried on for years.
What I did do to help, was love, care and be there for her, always asking how she was feeling and doing what I could to help. I always felt like there was something I should have done to protect her from this.
Now I realise that part of my caring so much actually played a role in keeping her stuck in her condition for longer.
When she was feeling better, I was always worried she would do too much (of course I now understand there is a fine balance between not doing too much, and holding yourself back).
But I was always so worried that I kept saying, ‘Be careful’, ‘Don’t push yourself’. I asked every day, many times a day, ‘How are you feeling?’ even though we knew that she wasn’t feeling good. We would keep talking about it which actually didn’t help her or us.
The Shift That Made the Difference
Once we finally realised this and we started changing the language we used, and when we spent time together, we focused on having some fun, and laughing, and not talking about it all the time. Slowly it made a difference.
It took a while to make these changes, as of course it had been years of saying the same things every day. But eventually we did stop and I also stopped worrying so much, and stopped feeling guilty because I accepted that it wasn’t anything I had done or not done.
A New Kind of Support
Being there, loving, supporting and caring, played its role. Once I realised I needed to also be there to help support her in a different way, to be a positive support, I reminded her sometimes to change the subject, or when she was having a PJ Day [pyjama day], I was just there to help her laugh and not worry that it was forever, it’s just one PJ day!
One thing I did do was to ensure that Kelly built up her strength through getting out and walking, even if at first it was only to the end of the road. I just knew that this was important because it is easy to become bedbound with this condition.
We are the best of friends and the condition made us closer, so there are always good things that come out of any situation.
Sue’s Top Tips
My top tips for anyone supporting a recoverer are:
- Just remember to not let it take over your lives, although that is easier said than done. But being aware of it is a great place to start!
- As they are getting used to what they are able to do, testing their boundaries and what makes them tired, they will get used to it and know what they can and can’t do
- Encourage getting outside and walking. Build this up a bit at a time and don’t take no for an answer.
- Learning to trust what they ‘can do’ is important. (A gentle reminder every now and then is ok, just not every day).
- Changing those language patterns is key and of course laughter is the best medicine, so a good movie, and hug, go a very long way!
Killing With Kindness
As you know there are many relationships that are affected when a condition like this comes into your life, and it is clear from Sue’s very honest account that the dynamics within a family can be both a help and a hindrance to the person suffering.
It is also very important for the needs of the supporters and the wider family to be recognised, having to live with it every day too.
Killing With Kindness
What Sue has spoken of here is that like many supporters she gave up her job, she suffered from worry and guilt and invested every moment into Kelly and her recovery.
This is what most people would do. If we look at the phases of Recovery this is Phase 3 whereby a recoverer becomes defined by their illness. It is what everyone focuses on and dictates the way life is lived in a household.
Other families have told how the whole family got involved in fundraising which, although it is very commendable, means that even more time is dedicated to talking and living illness.
At the time Sue had no guidance to see that it is vital to use distraction when the conversation is dominated by illness. She had to learn the hard way how important it is to believe in recovery rather than be consumed with worry that the person won’t get better.
This is from The National Centre for Eating Disorders which helps those who are caring for someone with an eating disorder, however, the advice is honest and valuable.
"Love alone will not help. The person with an eating disorder will almost certainly need professional help & treatment.
Anyone who is not trained in eating disorder treatment will probably not be able to help a sufferer and may unwittingly make things worse by saying or doing the wrong things.
Families, friends and colleagues can be valuable allies in an overall treatment plan. In fact, research shows clearly that recovery is faster and better when carers are taught how to be involved with therapy in the right way.
There is very strong evidence that helping carers makes it more likely that a sufferer will get help, accept help and recover. Working with carers helps us to help you do the right thing at the right time with someone who is struggling with an eating disorder & issues around food. We can even help you to find a way through what may feel like a medical maze."
Notice how honest and empowering this is. It really does say upfront that you need to know how help in the right way.
The reason we cite this is because it is our firm belief that with informed support the journey to recovery can be short cut.
Different Types of Carer
Let’s look at the way unhealthy dynamics evolve.
Unspoken Payoffs
This is a difficult one - the world of unspoken payoffs. The dynamics that operate in families are complex at the best of times. When illness enters the equation it can complicate things further.
We want to look at the word control here. In relationships where there may have been some strain prior to illness, whether that be between a parent and child, a husband and wife or between partners, it can be a major factor on how the recovery process plays out.
Let’s take 3 scenarios we hear about over and over again.
The Resentful Carer
The resentful partner that has the ‘caring' thrust upon them once this illness sets in. The relationship was far from happy prior to this but the guilt factor means they stay and provide support. This may manifest in them being there physically but the emotional support is missing.
They may be unkind and say hurtful things blaming the sufferer for the fact they are stuck caring for them. In some cases the person who is ill has attention from the carer who may have been absent or distant. This attention is a kind of emotional blackmail which, even though it is negative, may seem better than losing them altogether.
Ironically the condition is probably the result of being in such a destructive relationship in the first place.
The Co-Dependent Carer
The issues of co-dependency come up too. We all have needs and if we need to be needed, having an ill person in our life can fulfil that need so it can also stand in the way of wanting the person to recover.
This is demonstrated when the carer does every little thing for the person they are caring for. When we bring up children we are nurturing them yet fostering independence. This is healthy. It is the same with someone who is ill.
Self-esteem and confidence need to be rebuilt by encouraging them to do things for themselves whenever possible.
The Controller
The parent or partner who actually craves control. Being the carer or the sufferer in this scenario can provide a space to fulfil their need to control the other person. If the sufferer is that person who has been powerless and craves control then the illness will be the vehicle that dominates what the other person can and can’t do and it may make them subservient to the person and their needs.
In this situation you may remember Lucy London in her interview talking about the unconscious nature of this type of dynamic. If the carer is the controlling party they will run the whole show. Dictating what the ill person can and can’t do and making the decisions about what will and won’t work in terms of intervention.
We have had many occasions when carers read our material and make the decision whether or not to show it to or consult the person they are caring for. This reading and filtering of information and speaking for the person are a controlling and disempowering act. This kind of power play goes on every day when one party is ill.
Elaine says:
I recently interviewed a Reiki Practitioner who told me she had an aggressive husband of one of her clients knocking down her door. He told her to cancel any further appointments with his wife because if she were to recover he would lose his care allowance and disability car.
This is not an isolated case. One of our nutritionists had a client call her very early while her husband was in the shower saying if he wasn’t allowed into the consultation he would not allow her to attend. He was hitting his wife and knew that she would tell the nutritionist if he were not there.
These are all unhealthy support dynamics and one that has yet to be identified is the way fear is acted out when there is illness in the home.
How Kids Cope
Children can feel totally powerless when a parent is ill. Sometimes they become protective and take on too much responsibility for a young person, and in other cases their way of dealing with it is to almost ignore the fact that it is happening.
They will avoid the parent who is ill and look as if they really don’t care. This can make a recoverer feel really hurt. It is often that they are experiencing a real fear of what this means for them. The only way they can deal with it is through denial that it is happening.
If it is a sibling then another child can feel that they are unimportant and that the parents only care about the sister or brother that is ill. When children lack attention they will often act up to get some.
They simply crave a little one on one attention but feel unable to ask for it, so being awkward or un-cooperative is often a sign that they are feeling unloved or unimportant.
A Husband's Story
I look back on the days when Elaine was really suffering as a dark time. I call it that because we really were ‘in the dark’ as to why Elaine, who was always so full of life and energy, was suddenly unable to get up, let alone work or function as she once did.
It is shocking to see someone you love in that state and very upsetting when they burst into tears and ask questions that you can’t answer.
Why me? Will I get better? What happens if I don’t? If I can’t be me who am I? Will people still like me if I can’t do what I used to do?
This feeling of helplessness was magnified by the total ambivalence of our GP whose answer was to reach for the prescription pad to prescribe anti-depressants. I remember a fierce argument with a house officer when Elaine went to hospital to see a neurologist. He still wanted to treat depression and would not accept that this was an effect of the illness not the cause.
I was lifted by the consultant neurologist who said ‘’these people get better’’. It is natural to try and research into what is happening. The first book I read was so grim, talking about wheelchairs and disability that I resolved never to read another.
Support groups were no better as they were concentrating on managing symptoms and claiming benefits. The words of the consultant stayed with me ‘’these people get better’’.
I just wish that message was available more centrally because I believe it kept me going. It is hard to leave the person you love most in bed, go to work and come back after a 12 hour day to find them still there, then face the other chores of daily life to keep the household on track - cleaning, cooking, washing etc.
But you have to hang on to the fact that it is for a finite time and even though it feels like forever it will pass with the right interventions.
Rob’s Top Tips
- Always believe recovery is going to happen
- Don’t show fear to the person you are caring for even if you feel it
- Try and keep things normal
- Still show interest in what the children or other members of the family are doing
- Going to work and having to focus on something else kept me healthy and able to cope at home – do what you need to do for yourself and keep working or hobbies alive
- Look at what needs to change and make those changes. We sold our house and downsized so Elaine could rest and not worry about having to work while she was recovering
- I used to read story books to Elaine when she couldn’t sleep
- Reassure, Reassure and Reassure – recoverers are so anxious and need to hear that all will be well
Healthy Dynamics
Healthy Dynamics
Healthy dynamics are where a recoverer is given the appropriate amount of support by a person or people who do not allow their lives to be consumed by the illness.
The carer encourages independence and fosters a positive mind- set that this will pass and the recoverer will indeed recover.
The recoverer understands that the person providing support still needs to have a life.
To create a calm and stress-free environment as much as possible
Where recoveries give permission to the supporter so that they may point out unhelpful behaviours like obsessively talking about the illness or expecting the supporter to do things that the recoverer can do for themselves.
Siblings are given consideration so that they don’t miss out on everything, even though they are not ill
To still encourage each other to have hobbies and social activities so that the world does not become all about M.E.
To recognise and talk about the sexual and emotional needs of each other if you are in a relationship.
To plan for health and wellbeing and call each other when the talk gets negative.
Top Tips
Mind
Be kind to yourself and do whatever it takes to release stress from your head. Reiki or healing treatments are magnificent for calming the anxiety loop that is the curse of these conditions. If you are struggling with meditation have a reiki treatment.
Body
How much stretching are you doing each day? If you are really incapacitated, imagine your muscles stretching then gradually start by flexing and stretching each muscle.
Review the videos from Session 17 to help you.
Spirit
Natasha talks about drawing or making something that allows you to get lost in your own world. Could you find out about an art class or get a craft catalogue and see what you could do to tap into your creativity?
External World
What are you going to do when you are well? Let your mind focus on your ideas and take yourself into those scenarios.
I wanted to write a book, work with monkeys or help in a wool shop!! I didn’t do two of them but I did write a book.
Beginning to investigate your possibilities is important.
Some Meditations for You To Enjoy
Meditation: Vivienne Bouchier (15 mins)
Meditation: Jane Montague (30 mins)
Meditation: Diana Powley (40 mins)
And Finally
Inspirational Quote
"We delight in the beauty of the butterfly, but rarely admit the changes it has gone through to achieve that beauty."
- Maya Angelou
Recommended Reading
The Selfish Pig's Guide to Caring - Hugh Marriott
Co-Dependent No More - Melody Beattie
Enjoy your week and remember to update us in the Facebook Group.
Love & gratitude,
Elaine and the Team x
