Carers Wellbeing Hub

HELPFUL WORKSHEETS

We’ve produced a selection of useful worksheets to help you as you adapt to your loved ones diagnosis and your role in supporting them. As well as providing useful information, the worksheets also provide ideas and inspiration for helping your loved one live well with PSP & CBD, as well as how you can look after yourself whilst you do so.

The worksheets cover a range of topics, from falls, holidays, conserving energy, relaxation, sleep and maintaining your wellbeing during dark winter months.

Download the worksheets of your choice below.

ACTIVITIES

Any activity your loved one can safely engage in helps to keep them engaged and fulfilled. Whether that is watching television, holding hands, looking for birds out of a window, or something more energetic.

Download the below worksheet for ideas and inspiration for your loved one as their interests adapt and change.

CELEBRATIONS

Public holidays and celebrations are a great source of family time, but they can also disrupt your usual flow of activities and services. To help you plan ahead, carers have shared top tips to consider during times.

Download the below worksheet to read through the suggestions and make a note of any that will help.

CONSERVING ENERGY

Energy conservation techniques can help you reduce the fatigue and stress that
is often associated with caring. Energy conservation can help you make simple changes to your lifestyle to make the best use of your strength, effort, and time.

Download the below worksheet to help you to prioritise, plan and pace your activities.

FALLS INFORMATION

Falls are a common symptom of PSP & CBD. They can be sudden and can cause injury. People in caring roles can also experience falls themselves as they navigate spaces with support equipment, and maybe functioning whilst tired.

This worksheet explores why people fall, and provides some useful tips to consider.

GETTING OUTSIDE

Getting outside for fresh air and a change of scenery can be really beneficial, for both people who care and people living with PSP & CBD. As the condition progress, a trip out can need additional thought and planning.

This worksheet highlights resources you can use to plan a trip out and what support is available to help you do this.

HOLIDAYS

A love of holidays and taking a break from your usual routine, doesn’t end with a PSP or CBD diagnosis. It can need more planning, but holidays can still be possible at all stages of progression.

This worksheet offers ideas for different types of holidays, accommodation suggestions and equipment tips.

IMPACT OF CARING

The risk of carers burn out can increase as your loved ones needs change. Whether you are worried about access to local services, your social circle reducing or the uncertainly of how the condition progress. There’s a lot of think about.

In this worksheet carers give an insight into how they manage.

LAUGHTER HELPS

From wry smiles to hysterics humour is very much a part of the human experience. It is also something a research paper, published in in Lancet in 2023, can benefit carers, and the people they support.

This worksheet explores this research and also provides suggestions of how you can introduce more laughter into your life.

MUSIC

Music can be used for a wide variety of physical health benefits, like singing to improve lung capacity, alleviating pain, improving linguistic recovery, and even assisting walking gaits.

This worksheet looks into the variety of ways music can help carers and people living with PSP & CBD.

PHYSICAL HEALTH

When you are caring for others, it can be hard to give time to care for yourself. It can also feel difficult to know what to prioritise and with all the various health advice available, it can be confusing trying to decide what could be helpful.

Download this worksheet to learn more about what movement matters and tips for healthy and nutritious meals.

COOKING

Eating well is of course important for everyone’s wellbeing, loved ones and carers alike.

Download this worksheet to be inspired for ideas to help cook to ensure you eat for good nutrition and a balanced diet can boost our physical health, energy levels, immunity, concentration and even mood.

RELAXATION

Relaxation is a skill that is learnt gradually and requires practice. When mastered it can have a variety of benefits including releasing stress and tension, aiding sleep, and improving energy levels.

In this worksheet you can learn more about how relaxation can help and also techniques you can practice to help you learn to relax more.

SLEEP

A good night of sleep can provide a wealth of benefits, particularly to people in caring roles. But what do we know about sleep and how can we ensure we get enough of it?

This worksheet explores the different stages of sleep and what they mean, as well as highlighting resources to help you get a better night sleep.

WINTER WELLBEING

With the cold weather, seasonal bugs, lack of sunshine, and shorter days, Winter can have a negative impact on our health. So, what can carers do to maintain their wellbeing whilst caring for others during this season?

Download this worksheet to learn more about keeping warm, connected and well fed, whilst maintaining a bit of fresh air too.

MEDICATION INFORMATION

There are a range of medications available to help manage symptoms people living with PSP or CBD may experience.

Whilst advice about the actual medication is best coming from a medical professional, this information sheet can help you with aspects including storage of medications, side affects and different forms medication can come in.

PLANNING AHEAD

Life ahead can be made much easier with a little bit of prior thought and planning.

PSP & CBD are unpredictable in their nature, and as such this early planning can ensure your loved one’s wishes are maintained, even if symptoms begin to affect their ability to see, speak and think. This worksheet can guide you through some of the topics you may want to plan early after diagnosis.

DIFFICULT CONVERSATIONS

When supporting a loved one with a degenerative condition can meaning holding some difficult discussions. From agreeing day to day care arrangements to more complex conversations like advance care planning and making a Will.

This worksheet provides tips to help you plan such conversation, depending on who it is with and why.

CARERS CARDS AND PASSPORTS

As a carer it is recognised that you are entitled to support that makes your life easier. There are a range of initiatives out there to enable this.

This handout lists the various national and local cards available, as well as what are considered ‘carer’s passports’. Download to learn more.

COGNITION

People living with PSP or CBD can experience issues with their cognition, how they process information and understanding.

As a carer, dealing with any cognitive issues can be some of the most trying aspects of supporting someone with PSP or CBD. In this worksheet we look at the different ways cognition issues can present, as well as strategies you can use to manage these.

UNUSUAL BEHAVIOURS

It can be challenging for carers to deal with any strange or unexpected behaviours people living with PSP or CBD may display, especially if it is repetitive, unsafe, disinhibited or causes distress to the individual, yourself or others.

Following on from the cognition worksheet, this resource explores behaviours you may experience such as emotional liability, vocalisation and repetitive behaviours.

TELEHEALTH AND TELECARE

Telehealth or Telecare describes the use of technologies such as remote monitoring and emergency alarms to enable people who are unwell, at risk, disabled or frail to receive care at home so that they can live independently and stay in control of their support.

This worksheet explores how this support can help and share information of different providers.

PODCASTS FOR CARERS

In June 2022, PSPA launched a podcast. Now in its third season, the insightful podcast episodes cover a wide range of topics to help people living with PSP & CBD and their family members.

There are a number of podcasts specifically aimed at providing support and information for people who care for or support a loved one living with PSP or CBD. Have a listen to the episodes below.

You can also access all podcast episodes by clicking the button on the right.

CARING FOR A PARTNER

In this podcast episode, Julia Tickridge outlines her husband’s PSP diagnosis and how she sought support for both herself and Laurie.

CARING FOR A PARENT

In this podcast episode, Claire Wells talks about her mum’s CBD diagnosis and the care she provided at home and in a care setting.

SUPPORT FOR CARERS

In this podcast episode, PSPA Director of Service Development and Improvement, Carol Amirghiasvand, chats to Caroline Woodcock about the different ways the charity can support carers.

LOOKING AFTER YOURSELF

In this podcast episode, PSPA Carer Support Group Facilitator, Jacqui Ede, talks about looking after yourself whilst caring for someone living with PSP or CBD.

USEFUL ORGANISATIONS

In addition to the support PSPA provides, there are a range of external charities and organisations that can help you maintain your well being. View the list of organisations below and visit their websites for more information.

Rare Minds Wellbeing Hub

Rare Minds is a UK organisation providing online counselling and wellbeing services for members of the rare disease community. Their Wellbeing Hub has a range of resources and information to help you to live well with a condition or whilst you care for someone.

Carers UK Active Hub

Carers UK is a national charity that aims to make life better for the 5.7 million carers across the UK. Their Active Hub provides a range of information, ideas and video classes you can join to help maintain your wellbeing.

National Wellbeing Hub

The National Wellbeing hub provides support to people who care for others. On their website they have a range of resources from guided relaxations to gentle yoga to help you maintain your wellbeing.

Mind’s Mindfulness Tips

Mind is a UK charity supporting people as their maintain their wellbeing and mental health. They have created a number of resources to help introduce you to mindfulness and aid your home practice.

CONTACT US

If you would like to speak to someone about your role caring or support a loved one living with PSP or CBD, please get in touch using the details below.

Telephone: 0300 0110 122

Email: [email protected]