With contributions from Angel Kelly, SNJ Mental Health Editor
It’s not just tough physically being a parent of a disabled child. The toll on mental health can be extreme.
It’s very easy to lose all sense of who you are – or were – before you became a parent, when your focus is totally on your child's needs. That's especially true if you’ve also had to give up paid work. Even if you do manage to hold on to your job, the struggle with finding reliable disability-friendly childcare can be a nightmare. And if your child isn't a good sleeper, whether you work outside the home or not, your exhaustion will amplify any depression or anxiety you may be feeling. And if money is also a worry…you can imagine (or know) the strain many parent carers are under.
On top of all this, you may also be struggling to get educational, health or social care support for your child. This ongoing slog can have your emotions up and down and at times, like the straw that will break the proverbial camel’s back. And sometimes it does, even if just for a while, before you can pick yourself up off the floor and get back on track.
What are the signs that you're close to the edge?
As a parent carer, you’re quite likely to be under stress all the time. You’ve possibly even forgotten what it feels like not to feel a certain level of stress, so getting close to your very last nerve can creep up on you. You may also be suffering from hyper-vigilance; I know this was the case for me, never feeling able to relax, even when I was asleep. Even now my sons are young adults, I am awake at the slightest sound and these days it’s most likely to be the dog. It doesn’t let go easily.
So let’s say you’re on your very last nerve. It’s been one of those days/weeks/months/years. You find five minutes to sit, quietly with just the sound of the ticking clock reminding you that time is almost up before you must get going again. But you’re not sure you can. Physically or mentally, you’re just not sure how you are going to keep going.
From my own experience, the signs that it’s becoming a problem can include:
- Chest tightness, feeling like you’re short of breath or you are breathing shallowly
- Hyper-vigilance or a sense of being constantly poised to react
- Feeling like you have no one to talk to (isolation) or feeling unable to talk in case you can’t stop or you’ll start crying
- Forgetfulness, like thoughts keep leaking out of your ears
- Making mistakes like getting the time or date of appointments mixed up
- Feeling flat and without joy
- Getting frustrated, angry or irritated easily
- Low self-esteem, feeling like a bad parent.
- Feeling out of control or a sense that the 'spinning plates' are going to come crashing down
Of course lots of people can have one or more of these symptoms, but when you feel like you have more than you can bear, it’s time to act.
What can you do? Where can you turn?
First of all, if you’re reading this because you’re feeling like this now, and you need someone to talk to immediately, stop reading and please ring The Samaritans. This webpage has the numbers and emails. The are available 24/7, every day of the year. The number is 116 123 (UK).
Most people who call the Samaritans are not suicidal, so please still ring them – you are not wasting their time. When you phone them, they’ll say something like ‘Samaritans, can I help you?’ and they listen to you and help you talk through your concerns, worries and troubles. They’ll focus on your thoughts and feelings rather than going into the details.
SNJ’s Mental Health Editor, Angela Kelly, who is a practising mental health counsellor and also a parent carer has more advice:
“In that situation, it is about stopping and getting to know yourself so you can see when you are reaching your tipping point. It might not prevent it the first time it happens, but these situations are about learning from previous experiences.
"When this happens to me I have to pause and look at what it causing me to tip. Often it is my autistic son needing my constant attention, or him wanting me to watch every YouTube video he’s watching. Sometimes, it can be that he‘s making noises that usually just wash over me, but when I’m struggling, I become hyper-sensitive myself.
“I then have to make a choice. Sometimes I lock myself in the toilet and do some deep, controlled breathing. I might go upstairs to my room and tell my son I need 15 minutes. I have found that sharing with him I need some space helps, but now he is 14 and can grasp that a little better now occasionally. Having said that, he was trying to read this writing over my shoulder just now. When I asked him not to, he really over-reacted and is very hurt - so I will do a debrief with him about why he can't read over my shoulder when I’m writing or emailing.”
It’s always possible to find a counsellor or mental health practitioner if you can pay for it. But if you can’t, where can you get speedy support that doesn’t come with a price tag, especially when you may have to wait over a week for a GP appointment? Our GP now has a ‘triage’ system so you can be seen the same day, “if it is an emergency”. I'm a bit bemused by this. If it was an emergency, wouldn’t I be headed for A&E? That aside, they presumably mean something that can’t wait (so they should probably say that then, shouldn’t they?) However, if you are on your last nerve, or even close to it, be assured, you ARE an emergency. Your child depends on you and if you are about to hit rock-bottom, you cannot help them; that's an emergency. Insist on an appointment – a double appointment if necessary. Your GP really has a limited toolbox for immediate help, so will probably offer some form of medication and then, hopefully, an urgent referral for counselling.
Angela Kelly has some further advice on this:
“Look up support groups for mental health and make sure that you're registered as a carer with your doctor. They might also have some support resources. Call your local carers' support charity as they may have meet-ups or other local resources."
Other help sources you can try include:
- Urgent help from Mind
- Anxiety UK online therapy
- Anxiety UK Self-help groups list
- Contact charity support
If you haven’t had a Carer’s Assessment, ask your GP, social worker or other medical professional to refer you. You can also refer yourself. This link tells you how it works and what help and support you could get.
“Also ask your GP about carers’ break funding for help with getting away for a day or two or buying something like a new laptop – this money is for you, not the person you care for.” Angela Kelly, SNJ Mental Health Editor
Getting enough sleep
If sleep is a challenge, try to catch up with cat naps – just 10 minutes while you’re sat with your child as they watch TV could perk you up. And like when they were a baby – when they sleep, you sleep, if at all possible. Don’t run around doing household tasks – or at least not immediately. Set your phone alarm for however many minutes you want to give yourself so you don’t worry about sleeping too long and just close your eyes. Even if you don’t fall asleep, the inaction, along with some controlled breathing, can only benefit you. And don’t use it to think about problems. Close your eyes, look at the inside of your eyelids, and when a thought comes along, imagine gently batting it away. Just a few minutes if no thought can help refresh you.
If you have some time to relax but you can’t, Angela says, “Chek out online resources such as Mind or Anxiety UK or even YouTube which has lots of relaxation techniques."
You don’t have to be an experienced meditator to be able to use a relaxation track. There are guided meditations to help you quiet the buzzing brain or just gentle music. Personally, I am a huge believer in the power of binaural beats, that use different frequencies in each ear (you have to wear headphones) to make a third frequency that can help you achieve different mental states. There is research behind this, see here and here. I am a fan of Hemi-Sync in particular, and they now have a free app you can try out before you invest in any tracks, with a free full-length one to try each day. Find the app on Apple here, Android here and a whole free guided meditation here that you can download, or find the same one on YouTube here. You can also find similar on Spotify
You’re not alone.
If you don’t know any other parents near you with disabled children or if you have difficulty with friendships yourself, you can feel isolated and alone. Even if you have many friends who are in a similar position, it’s perfectly possible to feel alone in a crowd.
The charity, Contact, published a report a few years ago about the impact of isolation. 72% of parent carers experience mental ill health such as anxiety, depression or breakdown due to isolation, with almost half feeling so unwell that they asked their GP for medication or have seen a counsellor. One in five said a feeling of isolation has led to the break-up of their family life. It’s serious stuff, so don’t think that you’re being weak or should somehow “pull yourself together”.
If you want to try to find a local parent support group, look on your area’s Local Offer, or your local carers' support website. Your parent carer forum may also have a list of local support groups, and so may your GP surgery. If you’re not much of a social animal in person, there are many, many Facebook groups that are for parents of disabled children in general or condition-specific, such as for autism, Down’s syndrome or even for many different rare diseases. You can join in or just lurk, reading others’ experiences until you want to add something yourself.
What’s the government doing?
In June the government published a “Carers’ Action Plan” which included funding for a project to support parent carers to navigate the transition from child to adult services as their child approaches the age of 18. I don’t know any more than this yet, but if you do, please comment below on the blog post here.
Simple feel-good tips
Angela has some great ideas for de-stressing that you can try that don’t cost much – or anything.
“Just a few pounds on a treat for yourself can make all the difference. A new nail polish, a bit of make-up or a sachet of a face mask can all remind you of you, if those are the things you like. Otherwise, maybe a magazine, a new book, or even a haircut or new item of clothing, however small.
“What’s helped me personally are daily walks and making sure I have a shower every day and wash my hair; that helps me feel much better. Talking to other people and telling them what has been going on also helps, keeping things inside your head will create overload. The saying ‘a problem shared is a problem halved’ really does help if you share with the right person.
“My anger release tips include going for a walk and screaming into an empty field, punching a pillow, writing things down, finding free online counselling and learning to respond and not react. I’ve found learning some psycho-education like the Drama Triangle can be helpful too (Carers UK PDF here)
- How to cope when supporting someone else
- Carers assessments
- Mind relaxation tips
- Special Needs Jungle: Our Mental Health archives
Don’t miss a thing!
She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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