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Dos and Don’ts of Supporting Caregivers

By Liza Cornwell

As the mother of a 15-year-old with serious mental health struggles, I feel totally powerless most of the time. The last two years have demanded reserves of resilience I had no idea I possessed. There have been multiple hospital admissions – with severe anorexia and under section as a result of various suicide attempts and self-harming. In between, we’ve tried to muddle along at home with the inadequate support the UK health system provides. During these two years of hell, as a single Mum I’ve struggled to support my two other children, I’ve had to give up the job I loved and defer the course of study I was due to embark on twice and my relationship with my long-term partner fell apart. My greatest source of strength has proved to be the considerate, generous people I’m lucky enough to have in my life. Whether neighbours, university friends or parents of my children’s friends, they have often known just the right thing to say or do, probably not even realising what a lifeline they’re being.

Sadly, with mental health struggles so alarmingly on the ascendant, my story is far from unusual. I expect most people have a friend who’s supporting someone with a mental health challenge, be that their child, their partner or someone else close to them. So, despite feeling largely impotent to help my own child, it occurred to me that perhaps I did have the power to do something a bit useful, by summarising the things my friends have done which have been genuinely helpful, and also by pointing out some of those times when, whilst well-intentioned, their actions or comments have fallen wide of the mark. So here are my Dos and Don’ts for the friends of someone caring for a family member with a serious mental health illness…

Do:

Make specific offers of help, rather than vague ‘let me know if there’s anything I can do’ offers. As a full-time carer, I’m often so exhausted that I can’t think straight, so it’s a relief when someone has thought about practical ways they can help. It’s also quite hard to contact someone and ask for a favour; it’s much easier to take up a specific offer that’s being made. Useful practical help might include:

–Logistics with other children/members of the family, for instance driving siblings to and from clubs, sports fixtures or playdates.

–Offering to have siblings for sleepovers/ playdates so they can get a break from the stressful atmosphere in their own house. I worry a lot about the impact on my other two children, so having parents of their friends collecting them to get involved in normal social activities is such a help.

–Offering to walk the dog, take pets to vet appointments.

–Messaging before a supermarket or pharmacy run or when editing an online grocery shop, to offer to pick up anything needed.

–Delivering meals – one of my friends brought a freshly cooked and delicious family dinner around once a week for a couple of months. Another stocked up my freezer with hearty meals from ‘Cook’. Both of them recognised I didn’t have the time to cook proper meals and their generosity was a godsend.

–Doing research on behalf of your friend. My sister-in-law’s research into care agencies when I was trying to source a part-time carer was of enormous practical help. She saved me frustrating time on internet searches and made some initial phone calls, which all meant I could pick the matter up much further along the line.

–Offer to give your friend some breaks from caring. Volunteer to sit in the house and mind the unwell family member. This might enable your friend to attend appointments or do other essential things for their own wellbeing; it may allow them to get some fresh air, walk the dog or meet up with other friends. In my case, friends minding my unwell child while I visit my elderly Mum in hospital, has been really valuable.

–Be there for the long haul. The first drama of hospitalisation and obvious illness tends to inspire lots of offers of help, cards, flowers and sympathy. Yet as the days drag on to weeks, then months and even years, it can feel like you’ve been forgotten as a carer. The world has moved on and understandably your friends are preoccupied with their own stresses and responsibilities. It may be that they don’t know what to say, they’ve been busy and time has slipped by without their noticing. Try to remember though, that supporting someone with a mental health illness is a long-term commitment, and your friend will appreciate knowing you’re there for the marathon, not just the sprint.

–Keep checking in regularly. One of my best friends now lives overseas, but every week she rings me for a chat and that has been a huge support. Messaging once a week is much more supportive than sporadic texts, asking how things are after weeks or indeed months. Replying to such messages, summarising all the difficulties of a long period of time can feel just too onerous and depressing. It also rings hollow when a friend texts once every 6 months or so saying they’ve ‘been thinking of you lots’ (especially if you’ve been following posts of their lovely mini-breaks and fun parties and dinners out on Instagram).

–Set up Whatsapp groups so that friends in the same group can be kept in the loop. This means your friend doesn’t have to keep repeating the same explanations and summaries of the crises and challenges they’ve faced. It can also be helpful for you to have a Whatsapp groups not including the friend themselves, so as a support network, you can keep in touch and update each other on concerns you have, times you’ve seen the friend and make suggestions of practical help; it also allows you to space visits out so that support is well-distributed.

–Continue to include your friend in social invitations, whilst acknowledging that their situation may mean they can’t participate. It’s easy to feel forgotten about as a carer.

–Try to organise social events that your carer friend can participate in – offer to bring dinner and a bottle of wine around to their house, come over with cake, make tea, offer a hug and suggest you watch some mindless TV together. If you have a friendship group that’s geographically far-flung, try to do some virtual catch-ups that your friend can participate in.

Don’t:

Give advice about dealing with the ill family member, unless you really are qualified to do so. Recommendations of particular professionals you have used or whom friends/ family have
found helpful can be constructive, as can signposting to relevant support bodies and organisations, but leave the actual advice to the professionals. It is hard for your well- intentioned suggestions not to be felt as criticism, especially when your friend is vulnerable and exhausted. I have found especially galling, well-meaning advice about:

–Maintaining boundaries with my child. With a healthy child this may be challenging but possible; but with a child who will threaten suicide attempts over the most apparently small issues, and quite possibly follow through, any discussion about boundary-setting needs to be with their mental health support team.

–Social media. We all know social media is very problematic and often particularly toxic to someone with mental health struggles, but depriving the child of their phone/iPad isn’t a straightforward step to take and also cuts them off from a lot of potentially positive interactions, especially problematic if they’re not able to see their peers in person.

–Food suggestions for someone with an eating disorder. Please don’t suggest that ‘a nice bowl of hearty soup’, a milkshake or that sumptuous chocolate cake they always used to love, would be just the thing to tempt my child to eat! Don’t you think I’ve tried everything like this already?! Please don’t bring around food for the child with the eating disorder; tasty treats for the rest of the family are very welcome though!

–Lean inwards. The ‘Circles of Support’ model is simple but useful to bear in mind. The concept is that you have the unwell person at the centre, with various circles emanating out from that point. The next most central circle being their immediate family (parents/siblings), one out from that would be other family members, partners who aren’t the sufferer’s parent, the next circle would be for close friends, then perhaps colleagues and neighbours, and so on… The concept is that you ‘dump out’ and ‘comfort in’. In other words, as parent of the sufferer, I can’t lean in on my ill child for support, but I can lean out to all my friends, my parents, the professionals. They however, must not lean in on me (over issues related to my child). This can be particularly hard for partners who are step parents to the ill child or for grandparents. They may feel that it isn’t compatible with an honest relationship to keep silent about their concerns, but by expressing these fears to the parents, they are in effect ‘leaning in’. Bear in mind that hope is essential for the primary carer to keep going day in, day out, to get out of bed after a broken night’s sleep, to bear the verbal abuse and trauma their day will probably involve. You may not be able to offer any words of great wisdom or insight, you won’t be able to ‘fix’ the situation, and saying glibly that ‘it’ll all be fine’, won’t be well-received, but sometimes a hug and an acknowledgement of how rubbish things are, is all that’s needed to give solace. What is certainly not needed is for you to express your own fears and despair about the person at the centre of the circles. It is of course important that you don’t keep such feelings bottled up, you need to lean out to the next circle of support for that – just don’t lean in!

One more thing about social media–have a think about what you post and try to be honest about some of the mundanities and frustrations of life in your posts, as well as the highlights. As a carer, it can feel so isolating and depressing seeing the apparently perfect lives of your friends on Instagram – it can seem that they’re all getting on with lives full of exotic holidays, romantic mini breaks, gourmet dinners and fun, sociable parties; whilst you’re stuck at home 24/7. It can be a little cheering to see some honest posts, even if just about burnt dinners or shoes destroyed by the puppy.

So that is my personal list of Dos and Don’ts. I hope it will be of some help to those who want to help their carer friend, but don’t quite know how. Most of all, I would like to say a huge thank you to all of my kind, thoughtful, generous friends, whose practical actions have given me reason to know, through experience, how friendship can really be the replenishing source to draw on for unfathomable reserves of resilience. To just keep going…

 

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5 Comments

  1. Fiona

    Great list. I’d just make one change for me. I’d want to go to the vets myself. During a particularly trying time when the “human” doctors and ED services were rather distant our vet was smashing and the cat suffered from quite a few exaggerated illnesses so that I could access his wise advice.

  2. Diane

    Thank you for these wise suggestions, Liz. My daughter has now been fully recovered for six years now – thanks be to God! – but I am now supporting several friends whose children struggle with their mental health. As a parent who has supported three kids with mental health issues, I realize how much I didn’t know before mental illness came to visit. I have experience that can be helpful when supporting my friends, but you’ve provided a great reminder that I still don’t know their children and their experience. Your suggestions for material helps to provide will be invaluable.

  3. Bryn Miller, LPC, CEDS-S

    Thank you for this Liz. I work with supporting parents/caregivers whose children are struggling with mental health issues and I would love to pass this along to them. What a great resource for them to send to their support people who are asking: “How can I help?” without the carer having to articulate what you have so beautifully voiced here. This work will help many others. Thank you!

  4. Laney

    Thanks for writing this. So many just don’t know what to do to be supportive. By putting it down in writing, you’ve created a useful resource to pass on.

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