Looking after yourself : Our expert, Jo, was here at... - Mencap

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Looking after yourself

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Sarah_MencapAdministrator

Our expert, Jo, was here at the beginning of July for our Looking after yourself week. Jo is a parent carer and a Counselling Psychologist. See the full conversation below.

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Great idea.

I am struggling with knowing I need to look after my son with his disabilities and difficulties. But I am not getting any younger and he is now 17 and I find it harder everyday. So many people say I need to put myself first for a change but find this really hard.

I am struggling with looking at residential for my son and him staying at home.

My head is spinning with what to do and I can’t seem to be able to focus on anything and seem so emotional about everything.

I am not sure if I can let him go but know I need to possible for my own health and well-being 😢

Terry73 profile image
Terry73 in reply to tiggybenny

Hi there

I just read your post and wanted to share that these are similar feelings I started to feel last year in the spring.

We have 4 children ranging from 10 to almost 18.

I am a stay at home mum...I have always wanted children (we were actually told we couldn't have children) went onto have 4 beautiful babies. ☺

I have always wanted to keep my now 15 nearly 16 year old son at home and keeping the family together was my whole ethos..

I finally started admitting from a very very deep place that I couldn't manage anymore. Our 15 year old became so challenging and big and strong for me and my husband to manage alone anymore. It all changed once puberty started. We have struggled for many years to get carers and good amounts of respite and last year became absolutely mentally and physically exhausted. (We still are to be honest)

We had been honest with our social workers 2 years before this that we needed more support but was told there wasnt any. We should just be happy with the support that was in place as others apparently have a lot less. You can imagine we were completely unhinged at this point as we had never ever made a nuisance of ourselves and our previous social worker had encouraged us to contact them more as we have always tended to get our head down and get on with it. We struggled to voice our inner struggles as we felt like we were being disloyal to our son.

Last year we started on a journey looking at options for our son...we are still on that journey and it is looking like things are in place almost for a new school (residential) starting in September where he can come home weekends and holidays.

It's been the most heart breaking decision we have ever made but I am so pleased we started the journey when we recognised we were near to breaking point as it's been a long painful and tiring year.

The process has been lengthy and exhausting mentally and physically so its important to decide what's right for you and your family at the right time.

Our son is a beautiful smiley happy young man who engages with everyone he meets (not always in a positive way!) and lives in the moment.

He is severely mentally disabled/non verbal/ with no sense of danger..we were convinced that he had Angelman syndrome but still have no proper diagnosis.

He has to be supervised 24/7 ..struggles to sleep and stay asleep.

Hope this helps you.

affinityhub profile image
affinityhubExpert in reply to Terry73

Thank you for sharing your experience. It sounds like it's been a difficult and emotional journey but so important to recognise what support you need and what is going to work for your family. I'm pleased to hear that you have something in place for September and hope that the transition goes well for you all.

There is sometimes a dream of an 'ideal' family life that we have in our minds, that isn't always a reality. It can take some time to adjust. And I guess new challenges keep coming up along the way so we can never get complacent.

Are there things that have helped you along with way?

Terry73 profile image
Terry73 in reply to affinityhub

Thanks for your comments.

What has been crucial for us been to keep the communication lines open in our marriage and however bad it gets to be able to recognise the amount of pressure and stress that we have to live with often surfaces in different forms of emotions.

We are Christians and belong to a local church and our support network has been invaluable over 18 years.

Walking is a real tonic for me and my husband enjoys singing and playing the guitar.

affinityhub profile image
affinityhubExpert in reply to Terry73

Yes, I think communication is so key between parents.

Faith is important and helpful for many parents. I think even families who are not regular attenders can still appreciate many of the groups and supports offered by local religious communities.

Walking is definitely one for me as well - being out in nature can be so healing. In the busyness of life it can make you stop and re-connect.

affinityhub profile image
affinityhubExpert in reply to tiggybenny

Hi, sorry to hear you're finding things difficult at the moment. It sounds like you're feeling stuck and not sure what to do for the best. There aren't always easy answers and hopefully hearing from others on here lets you know you're not alone in this struggle.

Is there anything that you currently do that helps you? even putting the worries aside for a short period of time to let you focus on something else? Does it help to chat with friends or talk things through with anyone?

It's really important to plan for the future and finding the balance of what works for you and the whole family. The emotions connected with this though are often more complicated and difficult when you are a parent carer.

Sarah_Mencap profile image
Sarah_MencapAdministrator in reply to tiggybenny

Hello tiggybenny. This must be a very difficult time for you. Is there anyone who can help you with this? Perhaps other family members, or friends?

Is there a local Mencap service near you? They may be able to offer you some support. If you'd like to talk to someone about this please give Mencap's helpline a call on 0808 808 1111 and they will be able to take the time to talk you through some options.

Do you get any support for yourself? Or any time to yourself? Jo is here to help all week so keep an eye out for some new ideas. Also, it might be worth seeing if there any support near you for carers - perhaps a Carers centre. There is one near me and they offer a wide range of help for unpaid carers.

Many thanks, Sarah

Henriet profile image
Henriet in reply to Sarah_Mencap

This kind of post is counter productive and would stoke anxiety for the family. It sounds exactly like what friends, church and the carers' resource used to repeat almost as a mantra to avoid actually getting on board and supporting. The family have been torn by their recent decision but it has been a tough year. Hopefully the transition goes smoothly.

Shue profile image
ShueCommunity friend in reply to tiggybenny

Hi, it is such a personal choice and I appreciate how hard it must be to make. Does your son have a social worker? If not tell social services you need one, explain how you are feeling and what you are considering they may provide more support for you both. If you do opt for residental do your research, see what all the options are as I'm sure if your sons happy and content it will make all the difference to your peace of mind. Best wishes.

Thanks Sarah.

My top tip about staying well and happy is don't be afraid to say no. I used to worry about offending people, but now I realise that I need to make sure I don't take on too much. When I try to please everyone I wear myself out, and usually end up pleasing no one. Thank you.

affinityhub profile image
affinityhubExpert in reply to crazysquirrel

That's a really useful tip and one that I try to remind myself of as well.

There is a limit to our own resources and we need to prioritise what we focus on.

I also think to myself about picking my battles. So I may let some things go, keeping an eye on the bigger picture. Or withdrawing from certain conflicts when I know I don't feel up to it, save it for another day.

It sounds like it's something you've learnt along the way as a parent carer. Parents often report gaining new skills or insights since having a disabled child. I'm interested to hear if others feel this here.

Hello

My name is Jo. I am a Parent Carer and a Counselling Psychologist. As a mum to three boys, the oldest of whom has cerebral palsy and learning disability, I know how hard it can be to take some time for ourselves and look after our own emotional needs.

I think it is helpful to stop and think about what we need and what’s possible in our busy lives. Even recognising that looking after ourselves is important can be a great first step. As the saying goes ‘you can’t pour from an empty cup’. But what and how? It doesn’t have to involve anything big, it can be little things like coffee with friends, reading a good book or even consciously thinking about a problem in a different way. I am currently researching Emotional Wellbeing in Parents of Children with a Learning and/or Developmental Disability and am interested in hearing your views.

There are no right or wrong answers and everyone’s experience will be different. It can be useful to talk to others, though, so people can share ideas of what works and what doesn’t. I like to go jogging when I feel worried about a problem, and sometimes when I’m dealing with a very stressful time at home I just think to myself ‘this won’t last forever’. At other times I make myself stop and do deep breaths and I find that helps me, but of course there are times when I need more than that, so it might be arranging respite or having a few hours to myself.

Hopefully we’ll all learn something along the way next week. What do you find helpful for looking after yourself?

I look forward to hearing from you next week.

Jo

Hello. Can you suggest any techniques or ideas to help me cope/stay calm when my daughter (adult) is challenging. I sometimes find it overwhelming, and I struggle to keep my temper in check. A little while later I can see it more clearly, and usually regret it. But when I feel like that it is very hard to break out of it and get some perspective. Grace

affinityhub profile image
affinityhubExpert in reply to Grace2232

Thanks for your post Grace2232. It’s great that you’re recognising this and looking for ways to support you and your daughter. I can totally relate to it and have had times when I haven’t been as patient as I would like to be. I think there are lots of different things to consider and see which makes sense for you.

If we start with the basics, the need to look after yourself – are you getting enough sleep, eating well, getting exercise, having some time to yourself – are all important. When we are tired or unwell it’s harder to stay calm in a challenging situation.

Even when we have all the basics covered there are of course times when things are difficult. In these moments some people find it useful to use the STOPP strategy. I’ve outlined it here:

S – Stop. Just pause for a moment

T – Take a breath. Notice your breathing as you breathe in and out

O – Observe.

What thoughts are going through your mind right now?

What sensations do you notice in your body?

P – Pull Back. Gain some perspective on the situation

What’s the bigger picture? Take the helicopter view

What is another way of looking at the situation?

What would a friend say to me right now?

How important is this? How important will it be in 6 months’ time?

P – Practice What Works – Proceed.

What is the best thing to do right now?

Best for me, for others, for the situation?

Other strategies could be noticing when you are starting to feel irritated or angry and perhaps going to another room – even locking yourself in the toilet for a couple of minutes. Do some deep breathing.

If there are certain triggers that lead to your daughter’s behaviour that challenges then having things in place that prevent it can be useful. Sometimes we need to do a bit of detective work to see what it is that causes it and what is being communicated. It’s not always that simple though I know.

My son finds transitions difficult so the door bell going and someone arriving can be disruptive. I try and engage him in something that has his attention, such as a favourite tv programme, when I’m expecting someone to arrive. At times I need to ignore the other demands on my attention and just focus on helping him calm down (which might mean ignoring the person who’s just arrived). Of course life doesn’t always go to plan but when it does and I’ve handled it I’ll give myself an imaginary pat on the back! I think recognising the impact on us is important and giving ourselves some nurturing or self-care as a ‘well done’ helps us manage next time. Giving ourselves a hard time for mistakes doesn’t help, we’re all human.

I wonder if anyone else has some suggestions? It can be very individual what people find useful so it’s nice to have lots of ideas then you can try a few options and see what works for you.

Freddy44 profile image
Freddy44 in reply to affinityhub

A few things that help me (I've got quite a temper, particularly when I'm tired).

1. Try to slow down. I'm often rushing and trying to get something done too quickly.

2. Don't drink too much caffeine. It makes me worse.

3. Try to stay positive and do one thing at once. (Related to 2.)

Once the dust has settled I do found that talking to other people helps. They can help me work on perspective, and give me time to vent.

I hope this helps a little. We've all been there, and we're all just doing our best.

affinityhub profile image
affinityhubExpert in reply to Freddy44

Thank you for sharing these, really good advice.

in reply to affinityhub

Thank you for posting, Jo, for me personally, it helps a little to know others are in the same boat. However I do have one ‘coping strategy ‘ that helps me and that is to step outside. I usually step into my garden. Being outside when indoors is stressful really helps me cope and put things in perspective. Just a few deep breaths and maybe a minute of weeding 😉 and I’m ready to go again ☺️

I look forward to reading your posts this week.

Best wishes

TTT x

affinityhub profile image
affinityhubExpert in reply to

Absolutely. I am going to talk a bit tomorrow about finding your community and realising you’re not alone. It’s so important.

It’s great to grab little moments that keep us grounded like that. Sometimes it’s the small things that have a longer lasting impact because they’re manageable and possible to integrate into our lives on a regular basis.

Thanks for your post

thanks for this - I have never heard of STOPP before. I will give it a go. I particularly like the observe bit. I don't do that at all at the mo. thanks again

Hi, I wanted to mention mindfulness today. It's something I've found difficult to stick with in the past, however, I know that for a lot of people it's really helpful. Research also suggests it has lots of benefits, but requires practice.

I'm copying a blog I wrote with a colleague (who's an expert on mindfulness) on how to do a simple activity. I hope it will be helpful.

fireflyfriends.com/hk/blog/...

Does anyone use this to help look after themselves?

I have just read your blog and it is very good. I have tried this sort of thing in the past, but I never feel to make much progress. However, I really think it might help me. It is hard to physically get away from things for me, but if I can learn to take time to myself in this way then it would be a good start. I will give it another go.

I have a question. I suffer from anxiety in some situations. I have seen my GP about it and it is something I am working on. Have you any tips/websites/books/videos you would recommend for a bit of self help? I'm very lazy - I love a video.

One thing that has helped, and something I don't always find time/inclination for, is eating properly. I hate cooking, and love food that is bad for me, but I am realiseing that if I eat well I do feel better able to face the day. It doesn't necessarily fix my anxiety, but it does feel like it is something I can do (and focus on).

affinityhub profile image
affinityhubExpert in reply to Frumpyfish

Thanks for the messages - great to hear that you'll give mindfulness another go.

There are some useful websites on anxiety, I particularly like Mind’s advice here:

mind.org.uk/information-sup...

and these sites:

nhs.uk/conditions/generalis...

anxietyuk.org.uk/get-help/

As well as strategies to help in the moment, it can be useful to consider if your anxiety is about something. Is it in relation to an activity, an event, pressures or relationships? If you can identity that there is a trigger then it might be possible to change something to do with that. It might be useful to talk this through with someone, such as your GP or they could refer you on for counselling or group support. Sometimes we’ve got too much on and need some downtime or a chance to offload.

Eating well is so important and it’s great that you’ve recognised that as something you can focus on. Unfortunately the not-so-healthy foods are often a quick fix and give us energy in the moment but then our blood sugar levels drop and then we need more – a vicious cycle. I notice this a bit with caffeine as well, which was something Freddy44 mentioned too.

You can apply the mindfulness principles to eating as well, being aware of what we’re feeling when we’re craving certain foods.

Russ Harris’ The Happiness Trap is a really useful book that uses Acceptance and Commitment Therapy techniques (mindfulness – based) to deal with stress, anxiety and depression. He also has a useful website with some free resources thehappinesstrap.com/free-r...

Hope that helps.

Sarah_Mencap profile image
Sarah_MencapAdministrator in reply to affinityhub

I also found this video which explained anxiety so well

youtube.com/watch?v=ttHu_N-...

Today I wanted to mention the importance of community and others, particularly other parent carers, who often have a greater understanding of the realities of being a parent of a disabled child.

Online communities, like Mencap’s one here, can be so helpful. It’s wonderful to see people sharing experiences and offering support in a way that other groups – such as other parents or professionals – may not be able to. There’s a level of connection and understanding that is unique.

As well as charity forums it’s always possible to find a group on social media (like facebook or twitter) to connect with. However, social media also needs to come with a health warning at times! Things can get misinterpreted or come across in a way that wasn’t meant. There can also be the danger, particularly in certain platforms like Instagram, that we only ever see people’s ‘best’ lives – the image of the perfect life/family etc. that really doesn’t tell the whole story. Sometimes if we’re feeling a bit vulnerable or down, having a difficult day, then seeing these images may make us feel worse. It might be useful, if you feel your social media use is taking over, to try and limit the amount of time you spend on it.

Equally, if you have a supportive network then turning to them and getting helpful responses can be great. It's easy and accessible but it's important to choose your group or network carefully.

Face to face support groups can also be excellent for connecting with others in a similar situation. Although finding them can be tricky in some areas and it can be quite personal what you want from a group. Is it that you want to meet other families with the same diagnosis as your child? Or are you more interested in meeting other parents with similar interests to you? Is it more important to have local contacts or are you happy to travel further to meet other families that are similar.

Sometimes when family life doesn't follow an expected, mainstream path it can make you feel isolated and like you're the only one going through certain emotions and experiences. Hearing from others and knowing that you are not alone can be helpful. I set up the website affinityhub.uk to include words of wisdom from parent carers – to share their experiences so that other parents know that they are not the only ones going through certain things. It also signposts to organisations and professionals that offer emotional support.

What helps you to connect with others? Are there times when being with others is more or less helpful? What are the factors that influence this?

I’d love to hear from you.

jow2319 profile image
jow2319 in reply to affinityhub

My mum really struggles with feeling isolated as she looks after my brother most of the time. She feels guilty about wanting any sort of live out of the house. She doesn't particularly want to take part in formal groups, but would just benefit from a natter and a cup of tea with friends.

i try to help when I can, and I talk to her most days, but I think some peers might be better suited to the confidant role.

One thing that has helped is getting a dog - I know that sounds silly but it really has given her someone to talk to (who is a good listener), and gives a her a chance to get out of the house.

affinityhub profile image
affinityhubExpert in reply to jow2319

I think getting a pet is a very valid point. Lots of studies show the benefits - psychological and physical.

I wonder if there’s local support she might be able to access. I’m sure Mencap would be able to help and signpost to what’s available.

Also GP surgeries can now do ‘social prescribing’ where they refer to non-clinical support. This might be a walking group, arts, volunteering or even a coffee and chat locally. All can help reduce isolation which can be so detrimental to our wellbeing.

I wonder if anyone else has any advice on the forum?

For me, keeping my brain occupied helps. I like playing board games, reading, watching TV (if I can get my hands on the control) and painting. It is all very low key stuff but it helps distract me. My mum used to play a lot of solitaire (cards) and I now know why – it was something different to concentrate on. She always said it gave her perspective.

affinityhub profile image
affinityhubExpert in reply to 00ferrc

These are really useful ideas thanks for sharing them. There’s definitely something about getting engrossed in an activity that can help, I guess it takes our mind off things. There’s a psychologist (with an unpronounceable name!) who writes about being in the ‘flow’ of an activity - giving us a sense of purpose and engagement that is good for our wellbeing.

I feel very anxious in social situations. I never used to. I might look on the outside, but inside I can feel awful. Can you suggest any ways to approach this?

affinityhub profile image
affinityhubExpert in reply to refinnejks

I’m sorry to hear you’re feeling socially anxious. This can be difficult and sometimes lead to avoiding the very situations that can be helpful, ie connecting with others. If you can still try to meet with others, while also getting support in understanding what the anxiety is about or what triggered it, that will help in the longer term.

It might be worth seeing your GP as they may be able to refer you for some psychological therapy or counselling to help you understand it a bit better and come up with some strategies to help.

There is useful information on the NHS website here:

nhs.uk/conditions/social-an...

And a great self help guide which you can download as an app.

There is also information here:

rcpsych.ac.uk/mental-health...

I hope you manage to get some support.

Today I wanted to talk about something that’s coming up in my research and wondered if the community could help. I’d really appreciate your feedback and response to this.

I’m reading about how we can change the way we think about things, such as a problem, and the impact this can have on our life and wellbeing. For example, if we were having difficulties with a care provider (education, health or social care) we might think:

A) oh no not again, I’m fed up of having to deal with these problems, I just can’t cope with another thing

or

B) right I’m going to get to the bottom of this, find out who I need to speak to and sort this once and for all!

I know these are rather simplistic examples and we could respond in any number of ways but I wanted to illustrate that A treats the problem as a threat, whereas B treats it as a challenge. The literature around this suggests that B has a much more positive effect on our wellbeing, our sense of control and helps build our resilience for future problems.

Social comparison is another area where what we think might help lift our mood. For example thinking of others who are worse off may help us appreciate what we have. Rather than focusing on negatives, putting things into perspective can help life your mood. A simple gratitude exercise such as thinking of three things you’re grateful for each day/week can help.

There are also lots of studies (and our intuition I suspect) that feeling positive emotions means that we can deal with problems in a much more effective way. So it all becomes tied up in an upward spiral. If you’re in a good mental state you can deal with problems in a better, more constructive way. Then managing problems well makes us feel good and the upward loop continues.

Of course sometimes other things get in the way - emotions like guilt or sorrow can feel all consuming, mental health difficulties like depression or anxiety may take over - and at times the problems become so numerous that we cannot cope as they overwhelm us and our resources. At these times we may need support from others to help us through.

What do you think of these ideas? Do they connect with your own experience?

I’m thinking of a personal example. When my son was younger and used to shriek in the supermarket, because I was feeling anxious, exhausted and didn’t really understand him as well as I do now I used to feel very stressed and worried about the reaction of those around me. Now that I feel more confident in my own understanding of his inner world and I am more empowered with the view that society should accept difference and disability, when he lets out a loud noise in public it doesn’t bother me. I think to myself ‘he’s in a good mood, if people stare that’s because they don’t understand, we have as much right to be here as anyone else’. I guess it’s my own inner dialogue that has changed the way I respond and the emotions I feel.

On our last day of this week I thought I’d raise a topic that is not often discussed; the positive impact that parent carers often report in relation to have a disabled child.

There is considerable acknowledgement of the negative aspects such as difficulties accessing support, added stresses, sense of loss of the imagined family life, financial and practical challenges and the impact on parent carers’ physical and emotional health.

However, there are positives that some parents report as well. That is not to deny the struggles or challenges that we experience as parent carers, but recognising that life may involve a whole range of emotions. As one parent said of their child ‘my greatest joy, my greatest heartache’.

To get us into a Friday Feeling on this lovely sunny day I thought I’d give an outline of some of the positives parent carers report. They have:

- learnt to put things into perspective

- become a more tolerant and patient person

- become a strong advocate of disabled rights and accepting difference

- gained news skills, awareness and mastery

- become more confident in dealing with other people

- renewed sense of purpose and meaning

- closer and more meaningful relationships with others

- realised they are stronger and more resilient than they initially thought

- re-affirmed their beliefs or values

- massive pride and joy in their child

What do you think of these - do they resonate with your experience? Do you have any you’d add? I’d love to hear them.

Freddy44 profile image
Freddy44 in reply to affinityhub

I am stronger than I thought I was. Sometimes, when I get a chance to reflect, I am pleased to think of how far we've come.

affinityhub profile image
affinityhubExpert in reply to Freddy44

That’s good to hear. I think you’re right that it’s about having time to reflect. We don’t always get much of that as parents. Good to take a moment when we can.

As our 'Looking After Yourself' Week comes to an end I wanted to do a final post to say it's been great ‘meeting’ so many of you on the forum over this last week. Thank you so much for your comments and advice – there is a wealth of experience here. It’s important to remember to look after yourself and this is an ongoing, lifelong project.

I’m researching Emotional Wellbeing in Parents of children with a learning and/or developmental disability (ie global developmental delay, autism) aged between 2-11 years old. If you’d be interested in taking part please do contact me. You can find more information here affinityhub.uk/8/research

All the best

Jo

in reply to affinityhub

Thank you, Jo, it’s Sunday and I’ve only just got around to reading your last posts. Can I reply later, or is this just limited to one week? Either way, it’s been a pleasure to read your thoughts and insights. Thank you. TTT x

Thank you for your post TTT. I think today is the last day for posting but I’m undertaking my research over the next few months so anyone can contact me via the website affinityhub.uk for that.

Thank you for all your comments and ideas, I’ve really enjoyed the week.

All the best

Jo

Sarah_Mencap profile image
Sarah_MencapAdministrator

Many thanks to everyone for taking part in this conversation. Also, a huge thanks to Jo for her wonderful replies.

If you want to find out more about Jo's research, visit affinityhub.uk/1/Welcome.html

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