You and your family: working together

Receiving a diagnosis of Tay-Sachs or Sandhoff disease may be one of the most challenging things for a family to face. Supporting one another can have a positive influence on your child or loved one’s quality of life.

Extended family, friends and your community may also be able to support your child or loved one and their family. Sometimes they may offer assistance, but it is also okay to ask them when you would like their support.

Helen and Caleb with their little boy, Archie

We were beyond honoured to have Caleb’s mum support us throughout Archie’s whole journey. She was there from the day he was born right up until his last breath. Every appointment she was with us. It helped to have someone else there so they could listen and soak in the important facts you may become numb to. I know I zoned out so many times or focus on one point and couldn’t hear what they were telling me. Having someone to hold us after his passing, organise a funeral with, cry with. It was vital.

– Helen, Archie’s Mum

Caring for the carer/s

A carer is an individual who provides personal care, support and assistance to another individual who needs it because they have a disability, a medical condition (including a terminal or chronic illness), a mental illness, or are frail and aged. (Carer Recognition Act 2010)

Parents of a child with Tay-Sachs or Sandhoff disease are often their child’s main carers. Being the carer for a child with Tay-Sachs or Sandhoff disease can be very challenging. You may become so preoccupied with the health and wellbeing of the person you are caring for that your own needs are forgotten. The following options may help you manage your own health and wellbeing.

Contact your GP

If you are a carer, you may be entitled to receive help and support, including financial support, from the government and other organisations. Your GP is a good person to talk to about this, or any other issues you may have.

It is normal for carers to feel a range of strong emotions. If you are experiencing mental health issues, whether as a result of your child or loved one’s diagnosis or not, your GP may be able to support you through the provision of a mental health care plan. This entitles you to Medicare rebates for mental health care.

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The following web pages are good places to start:

You never think anything like this could happen to your family, especially your own child. Hearing the words of your child’s diagnosis is something no parent should ever have to face. It was very hard to deal with and I think we were all in denial for a very long time.

– Sharni, Poppy’s Mum

Sleep and rest

A common problem for many carers is experiencing a lack of sleep. This is because the person they care for may need 24-hour attention, or because they are unable to relax. If you have a partner or family member to help give you a break to sleep in a separate room, including to take naps during the day, this can be a welcome break.

Building in periods of intentional rest from sensory, intellectual and emotional stimuli may help manage sleep deficit. Your GP or other health practitioner may also be able to provide tailored strategies to maximise the quality of your sleep.

Eat regular meals

If possible, ask your family and friends to help with cooking and shopping to ensure that eating nutritious meals and snacks is possible. Supermarket online ordering or home deliveries can also help with this.

You may also wish to consult your GP or a dietitian to optimise your diet for the stressful conditions you and your family are under.

Taking time for yourself

As a carer of someone with complex needs, there will be times when you may feel overwhelmed, stressed or just tired. It is more than okay for you to take time for yourself, both to protect and build your capacity in such trying moments. This does not need to take a lot of time; often just taking a few minutes of quiet time for yourself can help.

Looking after your own physical and mental health and wellbeing will make a positive difference to the way you feel and help you to carry out your role. This is another way to provide the best care for your child or loved one.

Exercise is a critical component of everyone’s health, and it can be highly beneficial in stress management.

To support you to take time for yourself, you may want to consider asking others around you for help. This can allow you to have time to relax, catch up with chores or spend some time with your partner or other people who are important to you.

It is vital that you take time for yourself. I know first-hand what it is like to want to be there 24/7 but you easily burn out. Allow help. Even if it’s just someone holding your child for 10 minutes while you shower. Ensure you’re eating meals. Without keeping yourself going you cannot give your full care to your child.

– Helen, Archie’s Mum

Engage in day-to-day activities

As a carer of someone with a life shortening condition, you may find yourself making sacrifices to ensure they are able to live their best life. However, it is okay for you to partake in day-to-day activities, such as going to work, shopping for groceries, or getting a haircut.

It is equally okay for you to let go of, or outsource some day-to-day activities. For example, some pharmacies have a home delivery service, which can save you a trip.

Book in a family getaway to a respite holiday home

Across Australia, there are a number of holiday homes run by charities. These homes are intentionally designed to accommodate children with life-limiting illnesses and their families and friends. They provide the opportunity for a family holiday in a safe and supportive environment.

Seek psychological support

You may wish to speak with your GP, a psychologist or counsellor to develop your capacity for self-care. Things you may wish to discuss with them include strategies on:

  • Practicing self-compassion
  • Building emotional capacity
  • Practicing self-care through activities that you find nurturing and comforting
  • Practicing mindfulness
  • Strengthening all family relationships through awareness and use of the five love languages

Some psychologists and counsellors specialise in anticipatory grief and loss, and it may be beneficial for you and your family members to have consultations and/or regular visits. Things you may wish to discuss with them include:

  • Tips and strategies to hinder the development of traumatic memory
  • Grief and loss
  • The importance of ritual and memory boxes for close family members and friends in managing grief and loss

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The following web pages are good places to start:

The Australian Psychology Society (APS) can be a useful resource to find a psychologist with expertise in grief.

Palliative Care Australia’s website Paediatric Palliative Care contains many useful resources applicable to carers that can support you through this journey.

Carer Gateway

Carer Gateway aims to make your life easier. By calling Carer Gateway, you will be connected with a new Australia-wide network of Carer Gateway service providers. They will talk through what you need and help you to find local services and support.

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What support is available?

Carer Gateway provides a range of services and supports delivered both in person and online.

  • Counselling: If you are feeling stressed, anxious, sad or frustrated, a counsellor can talk with you either in person or over the phone in the comfort of your own home.
  • Connect with other carers: You might like to meet with people like you who care for someone and share stories, knowledge and experience. You can do this with people in your area or you can join the carer forum online.
  • Respite care: If you get sick or hurt and you cannot look after someone, emergency respite services can help you. Service providers will find ways to look after the person you care for while you have a break. Planned respite care can also help you plan for regular breaks to rest and recharge.
  • Self-guided coaching: You can work through interactive online coaching sessions at your own pace. You can find a range of topics to help you in your caring role.
  • Skills courses: You can use these short online courses to help you to learn new skills in caring for someone and yourself.
  • Practical help and advice or information about financial support on the Carer Gateway webpages.

Importantly, you don’t have to know exactly what to ask for; you can just talk through any problems you are having, and Carer Gateway staff will try to match you with services that can help.

Who can use Carer Gateway?

All carers can access Carer Gateway services.

You are a carer if you are looking after someone with disability, a medical condition, mental illness or who is frail due to age. You don’t need to be a new carer to use Carer Gateway services. Any carer can use the services at any time in their caring journey.

You can find out more information at the following website.

Relationships

When a child is diagnosed with a rare disease like Tay-Sachs or Sandhoff, it can have a huge effect on the whole family. It can signal the beginning of many changes for your child or loved one, yourself, other members of the child’s family, and for relationships. Your plans and hopes for the future may also change as you adjust to your new reality.

Strong relationships, whether between couples, with other family members, or with friends, can provide stability and support. If, at any point, you are unable to see your family and friends, using technology may help your child or loved one connect with the key people in their life.

Couple relationships

If you are in a relationship, the dynamics of your relationship may change after receiving a diagnosis for your child. You will be faced with an enormous amount of new information and experience a wide range of emotions. You may need to take on new roles, and you may experience financial and other pressures.

You will both have the greatest insight into your child and your experiences, and so you may find great comfort in supporting one another. As each of you adapts to the changes that follow this type of diagnosis, you may find that there are differences in the way that you are responding. For example:

  • Some may adjust quickly, while others need more time
  • Some may feel that they are experiencing a loss of control over their situation and future, while others may feel called to action
  • Some may need to talk through their experiences and emotions, while others will want to be alone

Feelings of sadness, worry, denial, anger, embarrassment, fear, confusion, guilt, concern, resentment, and shock are normal. Some may feel acceptance, while others will not.

You may wish to discuss some of the following topics within your family relationships:

  • How is each of us feeling?
  • What impact are the changes having on us, individually and within our relationship?
  • What are our individual needs at this time, both practically and emotionally?

As the disease progresses, those diagnosed with Tay-Sachs or Sandhoff disease develop complex needs that often change rapidly. This can present many challenges to parents and other family members. The nature of family life may also change significantly and rapidly, and relationships may be strained.

Regardless of your parent and family structure, it can be helpful to come together to determine the values that are the most important to you. This can guide you through future experiences that you will face together. This exercise can help you to feel like you are part of a team, on the same page, and with similar expectations and outcomes in mind.

Some helpful questions to discuss together could include:

  • How would you like to look back and remember this time?
  • What would you like it to look and sound like?
  • What might help you to feel secure and supported by the people around you?
  • What might help you to offer security and support to the people around you?
  • What will make you feel proud of how you worked together?

Rare Find information iconFurther Information

The following web pages are good places to start:

Relationships Australia is a community-based, not-for-profit Australian organisation that provides relationship support services. Relationships Australia offers services around the country that include counselling, family dispute resolution (mediation) and a range of family and community support and education programs.

Siblings

If your child or loved one has siblings, or sibling-like relationships, it can be difficult to know when to tell them about the diagnosis, or how much information to provide them.

It is normal to feel concerned that children might experience a range of strong emotions in response, and that they may have difficulty understanding or processing the information. It is important to remember that these children will likely make their own observations about your child or loved one. Providing them with factual information can prevent them misinterpreting their observations.

The age of the child has a big influence over how much information to provide them. As a general rule of thumb, provide more detail, encourage more questions, and have more conversations the older the children are. This can help them grow their understanding as they mature.

For children of all ages, the questions that they ask you about the situation can shed light on their level of understanding. This may help you understand when they are ready for more information.

Rare Find Helping Hand iconOur Helping Hands

  • Try to be mindful of the emotions you display when speaking with siblings or other children about your child or loved one. Your emotions are likely to influence the way that they feel about the situation.
  • There may be certain times at which the siblings or other children will be asked questions about your child or loved one. For example, when starting school, or when taking up a new activity. It may be helpful to prepare them to answer these questions in advance of these changes. You may also be able to ask teachers or other supervisors to support them.
  • Older children in particular, may hide or downplay their own concerns or challenges as they are aware that the family is under other pressures. It may be helpful to have special time with each child that is only about them.
  • You may be able to seek advice and support from your support team on how to best support siblings and other children special to your child or loved one, including genetic counsellors, the palliative care team, psychologists or counsellors and social workers.
  • Your support team may also be able to recommend useful resources such as books or videos that may support siblings to understand the situation.

Rare Find information iconFurther Information

The following web pages are good places to start:

Siblings Australia promotes better support for siblings of children and adults with disability.

Other key relationships

Your wider family and other key people in your life will also be affected by your child or loved one receiving a diagnosis of Tay-Sachs or Sandhoff disease, as well as at other challenging times. You may find these key relationships to be a valuable source of support, but it is also important to consider how they may be impacted.

Grandparents may experience a range of complex emotions associated with not only their grandchild, but also their child (you or your child’s other parent). It may be beneficial to maintain open conversations with these key people. You may be able to encourage them to seek support if required, and they may be able to support you.

Your extended network

Your extended network may include your friends, colleagues, neighbours, and other members of your community. You may find your extended network to be a valuable source of support.

Different people can help you in different ways. You may be able to have a meaningful conversation with one person, while another will be more comfortable doing your grocery shopping for you. You may be able to rely on some people on a regular basis, and others in an emergency. It may help to keep a list of who can help you, in what way, and when.

It is okay to ask for help, and it is also okay not to return the favour.

Contact Rare Find Foundation if you would like copies of the physical Guide, or of particular Booklets to share with members of your care and support network.

Pre-school and school

All children should have the opportunity to learn, play and develop in an environment that is suitable to their needs and abilities.

From the onset of Tay-Sachs or Sandhoff disease in older children, their teachers will play an important role in their care. They will need to share information, concerns and decisions with you, as parents, and also with other health and social care professionals. As both diseases are very rare, and the needs of each child will vary greatly, everyone needs to share information about the progression of the disease and their day-to-day support of the child.

Marc with his son Sebby, playing on the floor