Being a parent is a full-time job at the best of times. If your son or daughter has additional support needs that places you as their full-time carer, the lifelong commitment can become a particular concern as you get older yourself.
It’s natural to want to do everything you can to help a loved one, especially your own child – and no matter how old they are. However, it’s important to recognise when that pressure and commitment starts to affect your own health and well-being.
Asking for help can be a difficult decision, especially if you’ve had a poor experience of other caregivers in the past. Uncertainty about the options and worries over the quality of care can cause many parents to quietly struggle on.
Here we explore the triggers for recognising when it’s time to ask for help for a child with an ongoing or growing support need.
A full-time caregiver – from childhood through to adulthood
If you’ve been your child’s main caregiver throughout their childhood, you may feel a strong duty to continue that role into their adult life.
Some parents start to experience the strain as the years go by, especially if their child’s support needs are increasing or raising new challenges. Maintaining the role of the main caregiver can be particularly difficult if you’ve been diagnosed with a health condition yourself, or after an accident or family crisis. It can suddenly become very apparent that extra help is needed.
One way of handling concerns about extending your immediate circle of support is by considering a respite care service. Arranged for a short period of time, even just a few days, temporary care in your home means you can sample a particular care provider, seeing whether their services suit you and, most importantly, your child. An option of live-in support is also available if preferable.
Melanie Dawson regularly helps families in the process of looking for extra support for their loved one. As the United Kingdom’s lead clinical care specialist at Helping Hands Home Care, her role is to help people with more complex healthcare needs to live as full a life as possible.
“It can certainly be daunting and unsettling for parents to realise when help is needed,” shares Melanie. “But once the right level of care is in place, the sense of relief for them is indescribable. Knowing that their loved one has the full support that’s required is a huge weight off their shoulders.
“But good care is about much more than that,” she adds. “It’s about a support package that’s completely centered around the individual and enabling them to live the way they want to live – whether that’s continuing with work, studying at University, travelling abroad or simply enjoying their hobbies and interests.”
Growing support needs
If your son or daughter has a chronic or progressive condition, such as multiple sclerosis, spinal muscular atrophy or muscular dystrophy, it’s important to have a clear plan for how to manage their support needs into the future. Your healthcare professionals will support with this, including their doctor, occupational therapist, speech therapist, physio and other care specialist.
For example, modifications may need to be made around the home. You may be researching mobility aids or speech aids. Or you may consider moving your loved one closer to the family home to reduce your travel time to see them.
If they prefer to stay at home rather than moving to a more formal care facility, this certainly is possible in many cases with a home care provider that covers more complex healthcare needs.
A trained live-in personal assistant can support with administering medication, using hoists and care and help with stomas, catheter maintenance, peg-feeding, tracheostomy, and much more.
Becoming a sudden caregiver later in life
A life-changing accident causing a spinal or brain injury, or a condition developed later in life, such as Parkinson’s or multiple sclerosis, causes some parents to welcome an adult child back into the family home to fulfill their support needs.
While the instinct to care and support a child through these life-changing circumstances is a natural reaction for many parents, the realities of what this may involve can be difficult and confronting, not least for you as parents, but also for your child.
Suddenly needing support with mobility or personal care, such as bathing and toileting, can cause huge amounts of distress, especially if your son or daughter was previously so independent.
A personal assistant trained in carefully and delicately responding to these feelings will help to encourage and aid your child’s independence. Rather than taking over on tasks, the focus is on assisting, when and where it’s needed, with their involvement, consent and input.
What’s more, a personal assistant who shares the same interests, likes and even outlook on life, means they can more easily build a strong and lasting relationship and become a great source of strength and encouragement.
Many home care providers across the United Kingdom offer live-in support on a temporary basis, from as little as three days. Support can even be offered in an emergency situation, if you need urgent cover for a family illness or crisis. Make sure you choose a service that is fully regulated and managed by specialists with clinical experience. The Quality Care Commission is an extremely helpful resource for comparing providers.
Ella Hendrix is a versatile freelance writer, currently covering topics on child behaviour, family psychology and parental guidance.