Just type and press 'enter'

SUPPORT

Carers

Respite Care

Being a carer is hard. The focus is often on the needs of the care receiver. Yet the carer can often be on call 24/7 often for months or years on end. It is exhausting and leaves little time for sleep or time to contemplate your own needs and health.

In care partnerships, both parties are often concerned about having external care providers. It is a significant act of generosity to insist your carer accesses support and respite regularly.

Respite care is best accessed as an early intervention. This may be informal arrangements provided by family or friends. Or formal services provided by external agencies such as Carers WA, Silver chain, Cancer council or the Commonwealth home support program. The advantage of early access means you can cope if it takes a while to sort things out. But it also provides opportunities for everyone to become familiar and comfortable with the process without being overwhelmed.

People often want to help but are unsure of how and not all people are suited to all tasks. Have a think about who would be best suited to help out in smaller ways. Such as driving to routine appointments, making a meal, tidying the house or garden or managing bill payments or acting as a communication hub.

Carers, remember you need to look after yourself first in order to be of service to others. Even machines need regular care and maintenance, and without it, everything will fall over.

Be there for others but never leave yourself behind – Dodinsky

Arranging Respite

Respite care can be provided in many ways by several services. Respite may include a few hours a week or a few days a month, or even a few weeks so that the carer can have a proper break.

Service can be provided in-home, at day centers, overnight or at hospice care by arrangement with your needs. You can start the conversation with your GP or Oncology team, social worker or carers gateway. Remember, there may be a gap between asking for help and it becoming available.

If you are having difficulty raising the issue or persuading your significant others of the benefits of respite care. The Reflections Support Coordinator may be able to guide you through the process.

Don’t wait until you are on your knees before asking for help.

Reflections Support Resources Directory

Browse our Support Resources Directory
to find your best support services

VIEW DIRECTORY

Adaptive Equipment / Contacts

Toilet Raiser, over toilet chairs, rails, commodes, shower chairs, grabbers, ramps, beds, chairs. There is a lot of equipment available to borrow, hire or buy that can make living at home with disease progression easier for you and you care team.

Occupational Therapists are available to help you decide on the best equipment for your needs and to ensure they are adjusted to your individual body type and environment. An inpatient hospital stay within 3 months provides access the hospital OT service who may come out to your home and complete a thorough assessment. Or equipment can be made available through Hospice at Home, Silver Chain, private providers or NDIS funding (for those under 65 years of age). It’s worth asking in the support group for people’s experiences with providers.

Many people are reluctant to invite specialist equipment into their home. It can be ugly and a daily reminder that illness will progress. Some people worry about becoming dependent on equipment or causing further stress when learning how to use, store and look after it.

On the upside, equipment does help to preserve autonomous living. It prevents simple tasks from being exhausting and creates a much safer environment for you and your family. Maintaining energy for the lighter things in life. It’s better to plan on what equipment you may need in the future than be left with several weeks of waiting.

Our community has found the following to be very helpful and are worth considering.

Adjustable Bed

Having a height adjustable bed is very useful as disease progresses. It helps to conserve energy and adjustable back rests makes sleeping more comfortable and effective. Many families adapt a living space to make space for a bed ensuring everyone gets some sleep. Electric beds with height, head and feet rising capabilities can make breathing easier, reduce swelling and help with repositioning and make bed changes easier.

Privately purchased beds can be designed to suit your home décor and even built within an existing frame. Independent king single beds within a king-size frame mean that couples can continue to share the same bed but tailor mattresses and bed positions to their own comfort and needs. If you hide the electric controllers no one would be able to tell.

Sit Stand Recline Chair

An electrically powered chair prevents difficulties encountered with seating on traditionally lower sofas. Chairs are height adjustable making getting in and out easier and often recline into comfortable sleeping positions. Otherwise, a height adjustable high-backed chair is a good alternative.

Wheelchairs

Wheelchairs will eventually become part of your new normal, if you’re smart. Electric wheelchairs can provide a higher level of independence and can still be pushed by carers as needed. Modern chairs can be folded to stow in the car or out of the way at home. Oxygen bottle can also be hooked onto the back as needed. Being able to get out of the house without worrying if your energy will meet the occasion makes a big difference to everyone.

Disabled Parking Permit

Download and print the application form for a disabled parking permit here. Take the completed form to your doctor or Occupational Therapist for them to sign and then post/email your application for review by ACROD. As your condition will deteriorate, it is best to anticipate your future needs, not your best day scenario.

Palliative Care Options / Contacts

It is a common misnomer that Palliative care is only for people who are close to death? This is not the case. Palliative care specialises in caring for those diagnosed with a life limiting illness. Even if you are receiving treatment for Mesothelioma, you can still benefit from Palliative care services.

Palliative care is all about improving the quality of your life and supporting you to live as fully as you are able. Palliative care is multidisciplinary which means that there is a team approach to supporting your needs and desires. A team will often include specialist doctors, pain specialists, nurses, physiotherapists, occupational therapists, social workers, speech therapists, counsellors, dieticians and spiritual/cultural care workers. They will work with you to keep you living as actively as possible. Responding quickly to changing circumstances and providing the support and equipment needed.

Palliative care is often able to provide care around the clock in your own home in addition to hospital and hospice. After an initial meeting with the Palliative Care Coordinator, the necessary team members will coordinate with you to visit in your own home and to provide care, support and necessary equipment. Palliative care services can also arrange respite care for carers.

Palliative care supports living your life in the best way possible for you. You will find their approach more relaxed, less rushed and entirely focused on your needs. Early involvement with Palliative care can mean greater comfort and ease for you and your loved ones.

Your oncologist or GP may refer you to the Palliative Care team at the hospital. Silver Chain provide hospice at home services in WA, there are different providers in each state.

Reflections Support Resources Directory

Browse our Support Resources Directory
to find your best support services

VIEW DIRECTORY