From InterAction 74, autumn 2017
Many family members and friends might not consider themselves to be carers – but looking after someone with M.E. makes you just that. Here we share members’ experiences and practical advice to help make caring for your loved one less overwhelming.
Becoming a carer for a loved one can come about as a sudden change, or be something that gradually develops over the years. Either way, being a carer can be a daunting prospect, irrespective of how natural a step it may feel.
The Carers Trust deﬁnes a carer as “anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support.”
This change in your role and relationship to the person for whom you are caring will take time to adjust. It can be a very difﬁcult process for both of you and may stir up some emotions which are challenging to accept.
Both of you need to work together in order to make the most of your new situation and move towards a better quality of life. This means accepting the illness and its restrictions. It is not unusual to feel a sense of loss for your past life or bitterness towards your new situation. These are natural feelings that you do not have to feel guilty about. You may not be the person with M.E., but you can still feel just as trapped, lonely and frustrated.
We support many people caring for loved ones with M.E., be they spouses, children, siblings or wider family members. And we’ve used their experiences to put together some key tips for becoming a carer.
1. Be informed: get all the advice and information that you can.
It may be that you have existing knowledge of M.E. through work or personal experience, but many new carers can also ﬁnd themselves struggling to get to grips with a diagnosis just as much as their loved one.
Take time to read up on the condition to understand what it can involve and how it might affect your family member. M.E. can manifest itself in many different ways, but understanding how it affects your loved one speciﬁcally is vital as you may ﬁnd yourself having to explain it for them, as Nicki experienced:
“GPs or other medical professionals you come across will look right through you, even when they know your husband/wife/ partner is relying on you to explain what is going on, because they’re suffering severe brain fog, and you know more about M.E. than they will ever know because you’ve spent every waking hour for over two years scouring the internet to ﬁnd out why he is going through this hideous experience.”
2. Talk to those who understand.
Acknowledging your feelings and discussing them is a vital step in the caring process and can be very helpful in developing and maintaining your new relationship. You may ﬁnd it helpful to talk through these emotions with someone, especially someone in the same position as yourself.
You will ﬁnd a section speciﬁcally for carers on our M.E. Friends Online forum. Or, if you are the parent of a child or young person with M.E., you can register for our Parent Members forum. Find out more on page 4 or visit www.actionforme.org.uk/community
3. Find light relief where possible.
There’s no question that being a carer can be incredibly challenging. Not only do you have to help the person you are caring for cope with M.E., but there’s also the physical and mental exhaustion it creates for you, too. For many, there are also other children or family members to look after, so ﬁnding opportunities to smile and laugh together can help create lighter moments.
One Member told us they do this by “ﬁnding the comedy in dealing with the physical and cognitive problems caused by the illness, or by playing ‘physio bingo’ during appointments: how long do you think it takes before we get full house when we watch out for activity, deconditioning, sleep, fatigue, schoolwork, head on one side... the difﬁculty is not giggling when we get it.”
4. Get the practical support you need.
If you have M.E. or care for someone who has M.E., you may be entitled to claim beneﬁts. Our free, conﬁdential Welfare Advice and Support Service can help – ﬁnd out more on p 4 – and we also produce a range of factsheets about beneﬁts including detailed information on completing application forms and attending assessments.
For those working as well as caring, we have found that having some literature about M.E. available can also be beneﬁcial in helping your employer to understand the challenges you face.
For those caring for a child, our Your child and M.E. booklet features further information and guidance on caring for a child who has M.E.
Carers UK (Tel: 0808 808 7777. www.carersuk.org) is a charity working solely with and for carers, so you may ﬁnd getting in touch with them helpful.
5. NEVER underestimate the difference you make.
When battling through the everyday to-do list while simultaneously caring for a loved one, there’s rarely time left to take a step back and think about what it is that you achieve. But it’s imperative to not lose sight of the difference you make to your loved one’s life.
These messages from Action for M.E. members demonstrate how much of a difference their carers make to their lives.
Jackie told us: “My husband is amazing. It took him a long time to accept that his busy, never stopping wife was now unable to even walk across the room. Happily I improved a bit and he now understands what I can and can’t do. We compromise sometimes, when he tells me off for attempting things I know I can’t do. He does so much for me – he’s out shopping at the moment – and I don’t know what I would do without him.”
Becky added: “My partner Tom helps me up the stairs, bathes me, washes my hair, does the cooking and walks the dog when I crash. Thankfully I don’t need this level of support too often, but it’s invaluable when I do.”
Action for M.E. member, Denise Malpas, sent us a letter to share with spouses and partners who ﬁnd themselves now as carers:
So you have just had medical conﬁrmation that your spouse/partner has M.E. How are you both going to cope? Is this going to wreck your lives?
You cannot see it or touch it. It’s a ghost, a spectre which has crept into your lives. How long might they have had it? That will have a bearing on recovery time and learning to live with it. Chances are that if they have had it a long time, they have been “running out of steam” but pushing themselves to act normal. They may not be going to die from it, but there is no magic cure or medicine to take for it.
The ﬁrst step is to get all the advice and information you can. Action for M.E. gives advice on all areas affected by M.E., and a lot of valuable contact numbers and addresses for help.
Don’t put off talking to each other. The most important thing to remember is that your spouse/partner may be feeling guilty, useless, inadequate and a nuisance and their self-esteem may gradually drop to an all-time low.
You can get lots of help, advice and support, but you will need to look for it. The worst thing you can do is try and block it out, act as though nothing is wrong and hope it will all go away and your wife/partner will re-appear. It won’t happen and this attitude could cause long-term, disastrous consequences for both of you.
Make sure the people closest to you really have the facts, especially children. Their mum/dad still looks the same, so they need to understand why their parent cannot do all they used to.
Try to think of every single thing that they normally do in a day. How could you help without making a big thing out of it?
Don’t try to jolly them along all the time. At home they need to know they can be how they feel, and not put on an act for you.
Life is going to ﬂuctuate daily for both of you. Unless you can accept this, life will be hard for both of you.
A great deal depends on you, their nearest and dearest, as to how you both cope and survive this major challenge in your lives.