Carer self-care

Some carers naturally feel that their needs are secondary to those of the person they look after – but this is simply not true, and can lead to carer ‘burnout’, when you’re so exhausted you can no longer cope with caring.

This is a common problem when caring and living with Parkinson’s but it can be avoided by recognising your limitations, planning effectively, being sensible and looking after your own health – emotional, mental and physical.

Emotional and mental health as a carer

A diagnosis of Parkinson’s can produce similar feelings in both the person diagnosed and those close to them, but a positive frame of mind can really make a difference.

General mental health care tips

Some key things to do include:

• Keep talking. Inevitably there will be times where one or both of you feel down, but you are there to support each other so try to be honest about your feelings and share the load.
• Learn more about Parkinson’s. This will help you feel more in control and able to manage the challenges you face.
• Make sure you have ‘me’ time. It’s crucial that you have regular opportunities to relax, get a good night’s sleep and practise some self care. You could also try complementary therapies like massage and Tai Chi to help you relax.
• Be aware of the warning signs. Things like anxiety, depression, fatigue and discontent suggest your emotional health is struggling, and you need to:
• Ask for help. A healthy carer is a better carer, so get support when you need it.

Keeping a diary

Keeping a diary can be a useful way to record how you cope with caring, what you do, how long tasks take and anything that you find particularly difficult. As well as being therapeutic and improving your sense of wellbeing, it can also help to identify problem areas and priorities which can be useful for doctors appointments or for any assessment required in order to access support.

Finding people to talk to

Being a carer can be tiring and often isolating, so it’s important to try and find time for yourself as often as possible, to socialise and talk about how you’re feeling. You can do this with:

• Family and friends, whether in person or over the phone
• Your local or national Parkinson’s organisation
• Local Parkinson’s and carer support groups
• Telephone-befriending networks and internet forums

Relationships and communication as a carer

Over time you may find that the relationship you have with the person you care for changes. If that person is your partner, you may find roles reverse as you take on responsibilities your partner previously had. Try to make sure you still spend plenty of quality time together, from booking outings to practising small, intimate acts of care like rubbing each other’s back or feet.

Communication difficulties are common in Parkinson’s, but they also affect family, friends and carers. Problems can be frustrating to deal with and misunderstandings may arise. The following suggestions may help when communicating with someone who has Parkinson’s:

• Be patient and give them plenty of time to collect their thoughts and communicate. Don’t walk away while they do this.
• Try not to interrupt and finish their sentences for them.
• Talk normally, without shouting or sounding stressed or impatient.
• Make sure you are both in the same room and can see each other.
• Listen carefully and turn off any distractions such as the radio or television.
• If you don’t understand something, ask them to repeat it louder and slower. Don’t pretend that you have understood if you haven’t.
• Encourage them to engage in a conversation but without putting them under pressure.
• Reassure them if they have difficulty communicating. A simple squeeze of the hand can be very calming and encouraging.

The other area where good communication is crucial is with your healthcare providers. Like all relationships, it requires effort on both sides to make it successful. Your doctor or other professionals in your team need to be open and approachable and must be able to understand your needs well. To achieve this, you need to provide the information they require honestly, neither glossing over difficulties you encounter nor exaggerating them. The more open and transparent you both can be, the better the care you will receive.

Physical health as a carer

It can be common for carers to focus so intently on the needs of the person they’re caring for that they forget to look after their own health – but keeping your body as healthy as possible is just as important.

General physical health care tips

It sounds simple, but it’s easy to neglect basic health tips when you’re a carer, so here’s your reminder to:

• Book a doctor’s appointment as soon as health problems arise – your health is as important as the person you’re caring for
• Keep up with regular health checks like eye tests, dental checkups, blood pressure checks and important screening tests like cervical smears
• Eat a balanced diet, and avoid drinking too much alcohol, even when stressed
• Develop a regular exercise routine. It’s important not just for fitness, but also mental health, and can also be a chance for ‘me’ time (such as gardening or going for walks) or socialising (such as joining an exercise class or group)
• Try complementary therapies. As well as reducing stress, some – like Tai Chi, Pilates, yoga and Alexander Technique – can also help with physical strength, making it easier to lift and turn the person you’re caring for

Looking after your back

Caring for someone with Parkinson’s may involve a significant amount of lifting and turning, putting extra strain on your back, neck and shoulders. While back pain can sometimes simply be relieved with painkillers, if the pain doesn’t ease within a few days you should see a doctor to rule out more serious back problems.

Here are some general lifting and handling techniques to ensure minimal strain and to prevent you injuring yourself:

Standing

Ensure good posture at all times, with your head up and shoulders straight – avoid slouching.

Lifting

Bend your knees, keep objects close to the body and avoid twisting while lifting heavy items.

Sitting

Ensure your back is supported at all times, with a well-supported chair or cushion in the arch of your back.

Bending

Avoid bending wherever possible, especially when you can sit instead, or kneel if working near to the ground. Raise work surfaces so you don’t have to bend.

Looking after your feet

Carers often find they spend a large proportion of their time on their feet, so foot care is essential. If you experience any problems, talk to your doctor who may refer you to a podiatrist for treatment.

Basic foot care can easily be done at home: wash your feet daily in warm, soapy water, and dry carefully between the toes. Trim nails regularly, cutting straight across without making nails too short or cutting down at the corners, as this may lead to in-growing toe nails. Always wear comfortable shoes to prevent long-term damage to your feet.

Find out more about good foot care

Respite care

No matter how dedicated you are, there are going to be times as a carer when you need to step back and take a break, both for your sake and the person you’re caring for. This is often called ‘respite care’, and can take many forms:

• Someone such as a friend, family, social care worker, or volunteer from a recognised carer support charity may come to your home to be with the person you look after for a few hours or overnight. This can be occasional or regular, depending on your needs.
• The person you care for may go to a day centre regularly so you can have a break, or they may go to a care home for a short stay, on an occasional or regular basis.
• You may go on holiday together but to a specialist centre or hotel where they can provide care so that you have some time to yourself but you both benefit from quality time away from home.

Depending on where you live, you may be eligible for financial help to cover the cost of respite care, so ask your healthcare team what the options are.

Later on, you might also consider a more permanent adjustment to your living arrangements, such as moving the person you’re caring for to a care home or hospice.