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A Whole Family Approach

One of the things we hear from the Mobilise Community is that other members of the family can make a huge difference. They might not call themselves carers, but they are all part of the caring circle. So we thought it'd be helpful to share our experiences and offer some top tips for using a whole family approach that may be helpful.

Suzanne’s experience

I’m caring for my husband with Young Onset Parkinson’s disease. We’ve got two girls aged 12 and 15. We have talked through a “what if plan” a bit - realising our normal support from grandparents wasn’t an option but that we did have local friends we could rely on.

The girls showed maturity in recognising how they could help if I fell ill, for example. The older one has the Pizza Hut app and was quite hopeful that would be a solution!

I know that when my girls are off school and are at home with Dad more than usual, it can make it feel like his condition has gotten worse. They are there for more of the tough times and they notice more of my caring role - plus, they occasionally do more to help. I’m also aware It’s not easy to let off steam in our house, we all know that stress makes Dad's symptoms worse so regular chats about how we are all doing is important to stop us bottling up our feelings.

Chloe’s experience

Despite getting into a routine, which is a balance between being a daughter, sister and carer, I often find that I am all of these and more, 24/7. As a carer for my brother, I am continuously on standby, never fully switched off and always with my phone close by. Whether it be anxiously waiting for a call or text, ready to jump into action if something goes wrong.

I often feel extremely far away (as I don't live with my brother) and no amount of screen time eases that feeling. The normal things feel like risks and I always doubt whether I am doing the right thing. This leads to a lot of feelings of guilt, especially because I cannot be there.

If my siblings have a bad day or need help with their homework, the best I can do is talk them through the steps and hope that words are enough. It's hard watching energy levels drop and fatigue levels rise as the days go on.

However, in a way, it has also brought my siblings closer and the dog has never been more active, so it’s not all bad. We are embracing it for what it is, making the most of what is out there, and finding creative ways to keep in touch online. We are just all looking forward to being the annoying big sister in person again.

Top tips for helping the whole family

1. Make time to listen

During challenging times, there is a tendency to not want to burden others by unloading feelings on them but that is why opportunities to be listened to are so important. Whether it is over a cup of tea or while washing up, just checking in can create a space to place those feelings and can make a difference on tough days.

For some, having a listening ear outside the house can be a great support. Carers have told us about their involvement in Church, Mosque, Synagogue or Temple group check-ins. As well as local community support and existing support networks are their way of reaching out.

Carers also find online meet-ups with other carers like our Mobilise Cuppas to be really useful too. Whoever it is for us and our loved ones, make sure we have someone or somewhere to listen to our feelings.

What feels different at the moment? How are things for us?

2. Keep in touch with family, friends and support networks online

Sometimes, our family and friends can feel a little further away. But many organisations offer ways to get in touch; some offer video conferencing, whilst others are on social media but most are still only a phone call away too.

Some of us have also found creative ways to spend time with family online through virtual quizzes, video diaries and group chats.

The top tip is therefore to keep in touch. A moment to catch up will help us all feel a little more connected. If you would like to keep connected with other carers, you are also welcome to join a Mobilise Cuppa.

3. Limit the amount of news and media

This is a top tip I wish I had given myself earlier. I found myself reading article after article, looking for a good news story, and wanted stories like the dolphins in the Italian canals to be true.

I became so focused on finding a good news story, it was like winning a ‘good news scratchcard’ but forgetting how many I had bought to get the win. I had to cut myself off and find a form of regular news that worked for me.

For younger family members, the news can be frightening. Limiting the news doesn’t have to mean not watching or reading it but finding ways to manage it. Some might find it useful to watch the news together from a reliable source. It is important to only watch enough to be informed, not to be consumed by it.

4. Try a routine

Caviat: This may not work for everyone!

For many of us, the defining day of the week is Bin Day (and even then I have missed one!) so this top tip is all about helping each day to feel productive and different from the day before.

Routines are tricky as it has got to work for you and your family but there are many things we can all do like plan a movie night, build a pillow fort or make a fake-away meal.

Daily routines are also a great way to recognise the quick wins and motivate us to get the jobs done. For family members who work from home or are remote learning, routine is hugely important for a work-life balance.

It also helps them to feel like they have accomplished something and switched off during the evening. For some, work is therapeutic and people can get lost in it so routines will help with rest breaks and screen breaks.

5. Find ways for each family member to have some ‘time away’ throughout the week - including us

Time away could be an opportunity for each family member to do something out of the ordinary to recharge. When we talked to carers they suggested;

  • A night in the spare room (or swap bedrooms / have a sleepover with siblings)

  • A walk

  • Time to connect with nature

  • A film night

But it is important to speak to family members of your household, and see what they might want to do.

What would you do with ‘time away’?

6. Involve the whole family in the 'What If' plan and the planning

'What If' plans can feel a little daunting at first but they are a really valuable tool for the whole family. Planning a ‘What If’ plan creates space for family members to share their concerns.

Working together to create a Plan B can help everyone to feel that they have a meaningful role and help to reduce feelings of worry. This is a time when “What if I or the person I care for gets sick?” is an important question.

7. Make a little history

Taking a moment to pause and reflect on the present can be a helpful way to take in what's currently happening. In years to come this will be part of our history. Why not create a time capsule, diary, video diary, or scrapbook to document our lives? We would love to see what you get up to! Please do share with us over on the Mobilise Hub.

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