You probably never thought you’d become a carer – maybe you don’t even like referring to yourself as one – but if you’re providing regular, ongoing care for a loved one with Parkinson’s, you are fulfilling the role of a carer. It can be tiring, stressful and challenging. And – despite the fact that being a carer often means giving up or reducing your own personal time or employed work – this role is also usually unpaid.
That’s why it’s so important to take good care of yourself and find out what help and support is available in your area – it’s often more than you think, and can have a real impact on your quality of life.
This guide lists all the various kinds of support you can explore as a carer, as well as giving some practical advice on things like safe ways to move and lift your loved one while caring for them, and communication tips.
Adapting to life with Parkinson’s
From the time of diagnosis, you and your partner will probably experience a range of emotions, such as sadness, fear of the future or anger. Communicating well with each other so that you can each express your feelings or concerns will help you both to manage them and adjust to changes over time as Parkinson’s progresses.
Initially you may not need to provide much physical support – many people with Parkinson’s remain independent for years.
One of the most important things you can do in the early days is to educate yourself and the person you care for about Parkinson’s – from the range of symptoms to the treatment options and resources available – to help you prepare for new challenges as they arise.
It’s also best to contact your local or national Parkinson’s organisation as early as possible so they can help guide you through your journey with the condition.
Get to know the Multidisciplinary Team (MDT)
Your partner or the person you care for will have a multidisciplinary team (MDT) of healthcare professionals – such as a physiotherapist, speech and language therapist and psychologist – who work together to help improve their quality of life, and this team is also there to help you as a carer. For instance:
- A doctor or pharmacist can help you find ways to manage your loved one’s medications and their side effects
- A physiotherapist can help you move and lift a person safely and independently
- An occupational therapist can advise you on ways to adapt your home to make daily life easier
- A speech and language therapist can help you and the person with Parkinson’s find new ways to communicate
- Psychologists and counsellors can help you with the mental and emotional strain of being a carer
- Complementary therapy providers like an acupuncturist or massage therapist can help relieve stress
The MDT can also help you to develop skills to cope as Parkinson’s progresses and can refer you to appropriate support organisations as the need arises. You will also work closely with the MDT when the time comes to approach palliative and end-of-life care.
Finding financial and practical support as a Parkinson’s carer
Depending on the country you live in, as a carer you may be entitled to financial help from the government, practical help from social services, or other forms of support from local charities (including your local or national Parkinson’s organisation).
It’s likely you’ll have to undergo an assessment to discover what support you’re entitled to, but this may include:
- Formal recognition of your role as a carer (which often entitles you to certain benefits), including recognition as a Young Carer if you’re under 18
- Specialist equipment or home modifications to make everyday life easier
- Day care or respite care (more on that below)
- Free healthcare services like physiotherapy or counselling
- Transport assistance
- Social or leisure opportunities
To find out what help is available where you are, you can contact:
- Government advice and information offices, particularly those dealing with benefits, financial and legal entitlements
- Your local housing office
- Counselling services
- Carer, disability and mobility organisations
- Voluntary organisations and services, including Parkinson’s carer support groups
- Religious or charitable organisations and services
- Private agencies (but always check the cost involved as charges can be high)
- Your doctor’s surgery, local government office, library or local newspaper may also have contact details or you can search online
It’s also really important to find people you can talk to who understand what life as a carer is like.
Find out more about mental and emotional support as a carer
You can also consider things like respite care (where, for instance, the person you’re caring for has a short break in a care home) to give yourself a well-earned break.
Find out more about respite care
Caring and continuing to work
As well as the financial benefits, paid employment can also provide opportunities for developing enjoyable social contacts and friendships, and greater self-esteem. But working and being a carer can be challenging so you will need to get the balance right.
If you still work but are finding it increasingly hard to continue, your employer may have policies in place to support carers – for example, flexible working hours, job sharing, working from home, and sabbatical leave.
If you do decide to stop working, make sure you still have opportunities to socialise, and speak to your local or national Parkinson’s organisation about what benefits and support is available in your area or online.
Practical advice as a carer: moving and lifting
Caution!
Over time, you may need to give the person you’re caring for extra support with things like walking, turning or getting out of a chair or bed. It’s important to understand the risks of moving someone who is frail or unsteady and to plan any manoeuvre carefully to minimise the chance of falling, slipping or damaging your back.
General advice for moving and lifting a person with Parkinson’s
Key points for safely helping someone move:
- Allow them to do as much as possible themselves, and let them control their movement as far as they are able. Avoid taking over or rushing.
- If you think that you will be unable to safely help someone to move on your own, then ask for assistance before you try.
- Explain what you are going to do before you start moving the person.
- Let them know how they can help you, even if it’s just by relaxing and doing nothing at all!
- Decide on the correct position for the manoeuvre, such as on the person’s least painful side or so that you can see their face if this helps with communication.
- Make sure that you have plenty of space and no obstacles where you plan to move to.
- Stand as close as possible to the person you are going to move as this will reduce strain on your back.
- Place your feet comfortably apart so that you are well balanced and in a solid position, also ensuring that you can move forwards and backwards as well as side-to-side.
- To reduce the risk of straining your back, always bend at the knees using your thigh muscles to take the weight and avoid twisting or bending at the waist.
- Use roll, tilt and slide techniques instead of lifting wherever possible.
- If the person you care for experiences muscular rigidity, then it is advisable to flex the limbs before attempting to move them. This is particularly important if they have been lying or sitting in the same position for some time.
Using equipment
A wide variety of equipment has been designed to assist with safely moving another person, for example:
- slide sheets to help roll, tilt or slide a person with minimal strain to yourself
- standing and turning aids
- electric recliner or riser chairs
- electric beds which allow the height of the bed and the elevation of the head position to be adjusted
- transfer boards for moving from one item of furniture to another
- stair lifts
Always allow the equipment to take as much strain as possible to protect your health, particularly your back.
An occupational therapist, physiotherapist, nurse or specialist back care adviser will be able to advise on specific aids and appropriate techniques to help you.
Step-by-step guides to moving someone to and from bed
Caution!
Guide to helping someone transfer from a wheelchair to a bed
Using a slide sheet is the easiest way to help someone move in bed. If you don’t have one, then you can improvise in the short term by using a good quality plastic sheet or bag as a substitute (you will need to cut the sealed end off the bag to form a tube).
Step 1
Place the chair parallel to the bed, ensure that the brake is on, the footplate is up and, if possible, remove the armrest nearest to the bed.
Step 2
Stand on the other side of the person to the bed, facing the same direction and with your feet apart, one foot in front of the other.
Make sure that the person’s feet are positioned for standing.
Bend your knees and put your arm around them, placing one hand on the person’s farthest hip and with your other hand take hold of their nearest hand.
Step 3
Ask them to lean forwards and together move forward and stand up.
Step 4
Once the person is stood upright, ask them to move around with you so that their back is facing and near to the bed.
Step 5
Bend your knees and help sit the person down on the side of the bed.
Guide to turning someone in bed
IMPORTANT:
Great care must be taken that the person does not roll out of bed when being turned. It is best if a second person stands at the other side of the bed or that something is placed there to prevent this occurring.
Step 1
Decide which way the person wants to face. The arm on that side should be bent at the elbow with the palm facing up at the side of their head.
Gently roll them onto one side and place the slide sheet under the person’s lower back, buttocks and upper thighs. Then roll on the opposite side to manoeuvre the slide sheet into position.
Step 2
Cross the ankles or bend the person’s knee on the opposite side to the way they will be turning.
Step 3
Stand at the side of the bed opposite to where the person wants to face, grasp the upper layer of the slide sheet and gently ease them over.
Guide for two people moving someone up a bed
The slide sheet should be positioned as before and used as follows:
Step 1
Ask the person to be moved to fold their arms across their abdomen or chest.
Step 2
Both carers should stand at either side of the bed facing each other.
Each of you should place your feet side by side with the foot nearest to the bedhead pointing in that direction with the knee slightly bent and your weight on the leg farthest from the bedhead.
Together both carers grasp the slide sheet and transfer their weight to the front leg bringing the person on the slide sheet with them.
Step 3
Stand at the side of the bed opposite to where the person wants to face, grasp the upper layer of the slide sheet and gently ease them over.
Always remove the slide sheet once the transfer is complete.
Preventing accidents
Accidents within the home are more likely if you are overstretched and tired, but many can be prevented. A few tips include:
- Make use of any specialist equipment that may be available, such as grab rails, walking and mobility aids.
- Keep electrical cables and other trip hazards out of the way
- Ensure you have good lighting on stairs
- Keep smoke detectors up to date
- Have an emergency plan in place, including emergency contact numbers and a personal alarm, and make sure relatives and neighbours are aware of the plan too
Parkinson's Carers Survey Report
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