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Becoming a Caregiver

Becoming the caregiver to a loved one with disabilities can be a stressful and emotional time. Whether you are a new caregiver or trying to help someone who is a new caregiver, there are some resources that can make things a little easier.

Key Points

  • Becoming a caregiver can be stressful and emotional, but there are resources that can make things a little easier.
  • Tap on the experience of seasoned caregivers, who have a lot of insight and knowledge to share, through support groups.
  • Many types of support groups exist, and it is important to have a good network of support, which can include friends and family members.
  • Doctors and other healthcare workers are instrumental in helping you make informed decisions about how to care for your loved one.

You can find information on supports for children and adults with disabilities in this website:

This section provides information on common caregiving issues you may encounter, as a caregiver. We hope you will find them useful.

 

Seeking support from another person

As caregivers, we often feel we are alone in our caregiving journey but we need not feel this way. There are others who have walked the same journey before. Though everyone’s care journey is unique, experienced caregivers have invaluable insights and knowledge to offer.

Actions To Take

  • Seek support from others, including other caregivers, doctors, and your friends and family.
  • Join a support group; find caregiver support groups
  • You can also find information on supports for children and adults with disabilities: By disability condition, or by type of disability support

Experienced caregivers can offer personal, tried-and-tested advice on the concerns and challenges faced by caregivers. Some support groups are run by VWOs or hospitals; others by caregivers themselves. In this day and age, support groups do not just rely on face-to-face meetings – they also have the benefit of social media and internet.

Friends and family members are also important sources of emotional support. Develop a support system of family and friends and meet other caregivers who share similar experiences with you - they are the ones who can journey with you. By helping and encouraging one another, the journey becomes easier.

 

Understanding conditions

Medical matters are complicated; but when it concerns your loved one, ‘complicated’ becomes frightening and frustrating.

Your doctor is an indispensable partner on your care journey. He/ she would have discussed with you the next steps ahead. This includes attending further clinical sessions or sessions on understanding the disability and being aware of the resources to help you manage your loved one’s condition.

It is important to maintain an effective and collaborative 2-way communication with your doctor. Having ready information about your care recipient and sharing your concerns while managing expectations will allow better information exchange and shared decision-making.

Look for reliable resources on the internet or check out the library for information. For example, the Caregivers Pod at Enabling Village has an e-kiosk that features a curated collection of disability and caregiving resources from the National Library.

In Singapore, there are more than 50 VWOs catering to persons with disabilities. Below is a list of VWOs catering to persons with disabilities, and which also offer some form of support for their caregivers.

What to expect after a diagnosis

For caregivers of young children with disabilities

Specialised support in the form of early intervention services offers help for young children with disabilities to develop and to maximise their potential in their growing years. Often, they benefit most from such help in their early childhood years, when they are six years and younger.

Through various early intervention programmes catered to young children with disabilities, their health, language and communication, cognitive development, and social and emotional development may improve.

The next big milestone for many caregivers is education – enrolling their child in a Special Education school, mainstream school or even getting an exemption. Having a sense of what lies ahead helps you to think through, prepare yourself and make life plans for your loved one. More information on typical life stages needs can be found in the Life Stages & Transitions section of this website.

Resources and Support


Life Stage Needs and Key Services in the Disability Sector

Diagnosis
Transition to
school
 
Transition to
adulthood
Change in
primary caregiver
Transition to
eldercare
sequenceDiagram Young Children->>Children & Teens: Early intervention, child care Young Children-->>Children & Teens: Planning for education Children & Teens->>Young Adults & Adults: Education student care services Young Adults & Adults->>Older Adults: Adult care services Children & Teens-->>Young Adults & Adults: Preparing for work, e.g. Note right of Children & Teens: •Work skill training •Transition-to-work services Young Adults & Adults->>Older Adults: Further education, employment Children & Teens-->>Young Adults & Adults: Long-term care planning, e.g. Note right of Children & Teens: •Deputyship •Financial and housing security •Alternative care arrangements Young Adults & Adults-->>Older Adults: Familiarising with eldercare services Young Children->>Young Adults & Adults: Residential care for children Young Adults & Adults->>Older Adults: Residential care for adults

* Not drawn to scale. Life stages and associated needs are indicative only - individual development and needs vary.


ref img:

Life stage chart


For caregivers of persons with acquired disabilities

The impact of a loved one acquiring a disability from a serious illness or accident goes far beyond the disability itself. There are the immediate pressures of looking after someone who used to be fit and independent, and coping with their physical and emotional needs. Then there could be problems with family finances, and the challenge of juggling work and other family commitments with caregiving duties. All these could leave even the most loving, committed caregiver feeling impossibly stretched, overwhelmed and exhausted.

Connecting with more experienced caregivers can help – after all, these are people who are coping and surviving, and have personal expertise to share. Some caregiver support groups are more informal; others also offer structured programmes to help caregivers.

If your loved one is receiving support from a voluntary welfare organisation for persons with disabilities, you could also check if it provides caregiver support activities or programmes.

Persons with acquired disabilities have also successfully re-integrated into the workforce. SG Enable’s Hospital-to-Work (H2W) programme provides participants with a holistic suite of services that includes rehabilitation, personal development and skills training, and employment assistance. Support is coordinated through a H2W Case Manager.

 

Bringing your loved ones with disabilities home from hospital

Bringing your loved ones home after an extended hospital stay can be both joyful and a little frightening. Here are some things you can do.


Working with the healthcare system

Caregivers can check with doctors and medical social workers for more information on post-hospitalisation plans. Discharge planning should start early during hospitalisation. This will allow adequate time for the healthcare team to prepare for any necessary referrals, rehabilitation and post-discharge needs, including home care. A smooth discharge plan will reduce stress and allow the caregiver to be better prepared.


Making your home conducive for caregiving and disability-friendly

You may need to make some changes to your home to make it easier and safer for a persons with disabilities to move about and care for themselves, and for caregivers to perform care tasks. There are quite a few possibilities, such as:

  • Changing the physical space – arranging of furniture, widening doorways to create room for ambulating and carrying out care tasks
  • Fittings and fixtures – these include grab bars and ramps for mobility, lowering light switches, using lever instead of knob taps
  • Assistive technology (AT) devices and software – there is a host of assistive technology that can facilitate independent living and care tasks. For more information, visit the Assistive Technology section of this website.
  • Making the HDB apartments more senior friendly. For more information, visit the Money Matters section of this website.

Some can be done fairly quickly if needed; others require planning and cost. But what actually needs to be done depends on the home itself and the support needs of the person with disabilities. You can seek advice from therapists in hospitals or your VWO. Smart home devices can also be used to let the persons with disabilities be more independent at home. For more information on smart home devices, see below:


Training

Prior to discharge, hospitals provide training to family member on how to care for their loved ones at home. Various VWOs and private service providers also provide training on home healthcare and care skills. A number of these are supported by the Caregiver Training Grant (CTG) – for more information on CTG and the courses it supports, see below:

For more information on schemes and services that support persons with disabilities, including hiring a foreign domestic worker or live-in caregiver, visit our Disability Support - Introduction page.

 

Supports for caregivers

Managing work

Juggling the demands of a career and caregiving can be a challenging task, and finding the right mix of family care, professional care and work can depend on many factors – some that the individual can control, such as skill in navigating the disability support landscape and working with service providers, and others that are purely serendipitous.

Under the law, employees are entitled to certain leaves of absence; these include child care leave, maternity leave, paternity leave and more. For more information on eligibility and entitlements for different types of leave, see below:

Caregivers can also consider no-pay leave and other flexi-work arrangements such as telecommuting, staggered hours and part-time work. These are not legal entitlements and are up to the discretion of employers.


Financial assistance for caregivers

At present, there are no nationwide financial assistance schemes intended for caregivers per se. However, there are various financial assistance schemes and subsidies tied to the use of services. For example, the Foreign Domestic Worker Levy Concession (FDWLC) and Grant (FDWG), and Assistive Technology Fund.

Some types of assistance are intended for the support of the person with disabilities, but others are generally provided to lower-income households. For more information, visit the Money Matters section of this website.

The government is looking into furthering the support of caregivers. See MOH’s Caregiver Support Action Plan

For more information on caregiving, do check out the Empowering Caregivers section in this website.