Why Parent Carers’ Health Can’t Wait Any Longer

We started Let's Take Care, the podcast for carers, because our children are now older, which gives us a bit more time for reflection. We also run our charity, Building for the Future, where we talk to many carers. Now that our children are a bit more independent, we have the space to think back on what we did, what we might have done differently, and how we want to go forward.

We realized that we didn’t always protect our own health because we were fighting so hard and providing so much care. We did a good job, just like every other SEND parent out there, but we hope to open up a conversation about the pitfalls and the joys of caregiving. We want to ensure people are looking after themselves in a way that we didn't.

When you have a baby, that child instantly comes first. Usually, as a child grows, they become more independent—they sleep through the night, they learn to talk—and the parents get a moment to exhale. For us, that point never really came. The "on-switch" is always on. One of our daughters is twenty-four, and the level of intense care remains the same as it was for a baby because she is non-verbal and requires total support. It wasn't until she was 21 that we finally got a full care team in. People don’t often realize that the level of intensity remains constant until you have outside help.

The Physical and Mental Toll

In the past, we were lucky to get even a few hours of respite a week. Being "always on" leads to what they call "caregiver burnout." It involves insomnia, chronic stress, and sometimes unhealthy coping mechanisms, like drinking too much "sleepy juice" (red wine) just to try and switch off.

The toll is physical, too. One of us was diagnosed with breast cancer in 2023, and there is a strong hunch that the lifestyle of a long-term carer—the inflammation caused by chronic stress—plays a role. We see high instances of ill health in our circles of parent carers compared to parents of non-disabled children. From heart arrhythmias in our 30s to high blood pressure and "broken" sleep patterns that never recover, the body stays in a state of permanent "fight or flight." It’s effectively PTSD. We stay awake all night doing paperwork or laundry because we feel guilty for sleeping, or we spend the early hours frantically Googling therapies because we feel we must leave no stone unturned.

Learning to Prioritize Self-Care

It has taken us nearly three decades to realize we have to look after ourselves. We spent years making sure our children had organic food and the best supplements while we ate whatever was left over. Now, we are learning to set boundaries.

Self-care looks different for everyone. It might mean:

• Physical Maintenance: Regular visits to a chiropractor or doing fitness classes that focus on core strength and balance.

• Mental Health: Seeking counseling to process the grief and the "hoop-jumping" the system requires.

• Trimming the Circle: Surrounding yourself with "radiators" (people who provide warmth) rather than "drains" (people who take without giving).

• Small Joys: Using sleep sprays (like eucalyptus), listening to frequencies on Spotify, or attending sound baths to help the brain reset.

• Nature: Walking in the woods for the restorative power of silence and fresh air.

  
  

Advice for the Next Generation of Carers

If we could go back, we’d tell our younger selves to be a bit more "selfish." If you need a walk, take the child with you even if they protest; you need that leg stretch and head space. Don't wait for a crisis to look after your back or your mental health.

The system is often broken, and service providers can make you feel like you’re begging for crumbs. It is soul-destroying. Our advice? Don’t do it alone. Talk to your GP, a friend, or a neighbour. When you’re angry at the system, write the "angry email" but don't send it—get the tension out, then write the professional one.

Most importantly, give yourself permission to exist outside of your role as a carer. You are a better mother, father, and friend when you take time for yourself. You matter. Your health matters. Taking care of yourself is a vital part of taking care of your family.

Take a listen to just some of the self care tips for carers that we have listed in the podcast below or like and listen wherever you get your podcasts.

Send in your ideas and best self care practices to: letstakecare@bftf.org.uk We’d love to hear from you.

Just click to listen! https://www.buzzsprout.com/2518012/episodes/18393849