The majority of families who are thinking about providing full-time, long-term care at home, whether for complex health needs, palliative care or end-of-life care, spend most of their time and energy planning for care costs and workers. It's only when something goes wrong that the house receives attention: if a worker can no longer get in at 10pm, if there is no place for the overnight person to sleep, or if, three months in, the family realises no one has enjoyed any privacy since it started.
The physical and practical arrangement of the house plays a lot more than most people think in determining whether an arrangement can be sustained. This article details what to resolve, preferably before the care begins.
Make sure to receive an occupational therapy home assessment before purchasing or moving.
Occupational therapy is clinical care, a clinical support, under Support at Home and the NDIS, so it does not count towards your contribution, even if your income and assets are low. There is no fee to take the assessment. The equipment and modifications that an OT recommends are a capital investment and are not deducted from the support hours you have available, so using the recommendations does not mean you have fewer support hours.
An OT will consider what the family no longer notices: the height of the bed, the step at the back door, the lighting along the path to the bathroom at 3am, the distance from the bedroom to the toilet, the threshold of the bathroom, the grab rail that is on the wrong side.
This is the least utilised entitlement in home care. Regularly, families have to pay for support hours when the equipment would have been sufficient.
If providing overnight care is a part of the agreement, then this is the first practical aspect and the one most likely to be fudged.
An extra bedroom is preferable. A closed door, a good bed, a place to put a bag.
A clearly marked area with a bed is the base. A study converted to a bedroom, a sunroom, a room with a sofa bed.
A couch in the living room does not work. Arrangements built on it do not last. Fatigued workers sleep poorly, become fatigued again, and leave; a tired overnight worker is a less safe overnight worker.
Also take into account the location of the worker's room in relation to the person's room. Close enough to hear and respond, but not so close that neither of them can sleep.
The requirement is even greater in the case of live-in care: their own room, reasonable privacy, some place to be off duty, and bathroom and kitchen facilities at agreed times.
Sounds simple, but is always a conflict.
How does the worker get in? If they come in at 10pm when everyone in the house is sleeping, or at 6am. Key, lock box, coded entry. Settle it, and agree on the consequences if it doesn't go as planned.
If it's a unit or apartment: fobs, intercoms, lift access, security door access, visitor parking rules, building manager permission. This should be sorted once, properly, at the beginning. If it's not dealt with, every time they come in is a small negotiation, and every time a new worker shows up, they have to work the building out from scratch.
Parking. What is the worker's parking spot? If there is a visitor bay, a driveway space or a permit, state this when arranging the care, this really does make rostering easier and fewer people are late. Parking is an actual cost in some areas and it would be valuable to know whether it is or not.
Security. Who is responsible for the keys, how they are returned when a worker leaves, and what happens if they are lost. Better to have a policy than wing it.
The place in which the care occurs most.
The height of the bed and access to it. A bed at a height which allows for a bed transfer and can be reached from both sides when repositioning or hoisting is required. An adjustable bed is typically the most valuable capital investment in the home and may be the most helpful piece of equipment.
Pressure care. Use a pressure-relieving mattress wherever there is any risk. This is not just about comfort, reducing the number of repositioning moves overnight is what turns an active night into a clinically safe sleepover, and that difference is worth tens of thousands of dollars a year.
Lighting. A light switch within easy reach and a night-light. It is the disorientation on awakening in the dark that makes a visit to the toilet a fall or a wandering episode.
The call arrangement. A bell, a call button, a monitor, a sensor, something reliable and within reach, agreed upon and tested.
Ensure a clear area for a hoist or walker, with the path to the door clear.
The location of most falls.
Grab rails, positioned by an OT rather than guessed at. The wrong rail in the wrong place is worse than none, as this gives false confidence.
A shower chair or bench, and a hand-held shower head.
No loose mats and non-slip flooring.
Threshold. One of the biggest hazards is a step into a shower, and a level-access shower is a common modification that is capital-funded.
Anti-scalding technology on taps, especially important if there is a cognitive impairment.
Space for a worker. If a bathroom is not set up so that a support worker can stand by the person, helping them safely with the activities of daily living can be difficult, and this is a frequent cause of personal care taking twice as long as it needs to.
Privacy and dignity. A closed door, a towel within reach, and, if the room can be seen from another room, something to address that.
The route from bed to bathroom is the most travelled and most dangerous path in the house at night. Lit, clear, short, with something to hold if necessary.
Trip hazards. Clutter that has built up, rugs, cords, uneven thresholds.
Kitchen, where the person continues to use it: easy-access storage, a kettle that can't overfill, stove isolation if cognition is a problem.
Steps and entries, including access to the bins and letterbox, which is often not considered a fall hazard, as no one would view it as part of the house.
Heating and cooling. Older adults do not regulate their temperature well, and cold and heat pose a true threat. If someone is not willing to pay for the heating or air conditioning, this needs to be dealt with directly.
Somewhere for equipment. A hoist when not in use, a suction unit, continence supplies and wound care dressings. Care produces stuff, and when a house has no room for it, it gets very messy.
The part nobody expects, everyone feels.
With 24-hour care, there is always a paid person in the house around the clock. This is a significant shift for a spouse who remains living there or an adult child who has moved in, and it may never be normal and often takes months.
Things that help:
A room that is off-limits. A place where a family member can close a door and no one would see them.
Establish rules for shared areas. Whether workers use the kitchen area, whether they watch TV, where they sit when not working, and whether they have their own meals or eat with the family. Implicit expectations foster silent resentment on both sides.
Telling it straight, instead of being polite. In these situations, most of the friction occurs when people don't say what they really mean. Even writing down the household norms will prevent a lot of it.
Recognising that it is unusual. You have workers in your house 24 hours a day, which is actually bizarre. Naming that with the workers typically makes it easier, not harder.
And the other side: workers have the right to a reasonable working environment. They need somewhere to store their bag, a bathroom, break space and a house that is hazard-free, including smoking in the house, as this affects them.
In a little folder or in a specific place, include:
The support plan and any care plans, current, in one place, updated rather than supplemented.
A one-page practical brief for new or occasional workers: routine, preferences, how the person expresses pain or refusal, what to look out for.
Information about medications and how to give them.
Contacts for emergencies and escalation, including after hours and when to call an ambulance.
Particulars about the equipment (make, model, settings, contact person at the supplier, what to do if it goes wrong).
A shift log that workers fill out, which lets a GP or nurse see patterns that no one notices from inside a single day.
Place it in a visible and familiar location. A folder that's on the kitchen bench gets used, a folder in a drawer isn't.
If you are installing this at this time, in order:
1. Schedule the OT evaluation. It's free and the rest merely follows.
2. Sort the overnight worker's sleeping area. Before the first shift, not after.
3. Solve access and keys. Including the apartment building if applicable.
4. Talk about going from the bed to the toilet. Lighting, rails and a clear floor.
5. Order equipment early. Capital-funded items are slow to arrive.
6. Record the house rules. Before someone begins, give them one page.
7. Organise the documentation folder and show each worker where it is.
Families underestimate the house's role in determining whether 24-hour care works. The single most valuable step is the occupational therapy assessment, which is free, unlocks equipment that is funded separately from support hours, and regularly identifies changes that decrease the number of hours of paid support.
Arrange the overnight sleeping quarters, access and keys before care begins, not after. Then record the house's expectations, since nearly all the conflicts in such arrangements stem from unspoken expectations.
Most of the things that make a house suitable for 24-hour care are capital funded, that is, not taken from support hours. An occupational therapist determines what is appropriate, but it will be beneficial to know what is available.
Adjustable beds, height for transfer safety, head and leg elevation for comfort, breathing and reflux. Often the best seller in the home.
Pressure-relieving mattresses, ranging from foam to alternating air. As well as being comfortable, these can decrease the number of times the person has to be repositioned overnight, so that an active night becomes a sleepover.
Hoists, mobile or ceiling mounted. A ceiling hoist can turn a two-person transfer into a one-person transfer and cut the cost of each transfer in half for as long as it is used.
Grab rails and bed rails, although please be aware that bed rails can sometimes be a restrictive practice and need to be assessed as such and authorised, rather than assumed.
Sensor technology, bed exit, door, falls, movement. Often what makes a sleepover possible instead of an active night.
Communication aids, where speech is limited.
Lifting and transfer aids such as slide sheets, transfer boards and turning discs, which help prevent injury to both the person and the worker.
Sometimes the truth is that the property isn't suitable, perhaps a steep block with no level entry, a bathroom that can't be altered, a second-storey bedroom with no way to bring the person down, a rental which won't allow changes to be made.
There are alternatives to consider before deciding that home care is not possible:
Reconfigure, do not modify. A room on the lower level converted to a bedroom. A converted dining room. Families are often reluctant to change the use of rooms, and it is frequently the simplest solution.
Portable and non-permanent equipment. This is especially important if the alterations require the landlord's permission in rentals. Many types of equipment are not attached to the ground.
Landlord consent. More often than families think, landlords will agree to changes that are easily reversible or that enhance the building, such as installing a new kitchen tap.
Moving. Moving to a one-level home is a big project, but sometimes it is the only solution that makes everything possible.
Co-location, a granny flat or moving closer to family, which changes the problem rather than solving it in place.
Before deciding that home care is not possible and that a move to residential care or a nursing home is the only option, it is important to have an OT perspective on whether the property can be made viable, rather than making big decisions one way or the other.
Discuss this with the occupational therapist, or before the OT's visit so you can bring up details.
Bedroom: bed height and access from both sides; pressure-relieving mattress if there is any risk; reachable light switch and night light; call arrangement easy to reach; clear floor space for a hoist and walker; a place for supplies.
Bathroom: grab rails positioned by an OT, shower chair, hand-held shower head, non-slip floors, no loose mats, level access (no step), thermostatic taps, space for a worker to stand alongside, a door that closes.
Bed-to-bathroom route is lit, clear, short and has something to hold. This is the nighttime walking route in the house that is the most travelled and most dangerous.
Kitchen: easy access to storage; a kettle that cannot be overfilled; stove isolation where cognition is a concern; a safe food preparation area.
Living areas: a chair the person can get out of without assistance; clear pathways; no trailing cords; no loose rugs.
Entry: level or ramped, handrails on steps, lighting on the path, safe access to bins and letterbox, secure but accessible entry for workers.
Worker space: a good place to sleep for overnight shifts in a designated room; a place for a bag; bathroom; break room.
Storage: a specific area for continence supplies, dressings and equipment when not in use.
Documentation: one obvious, consistent place for the folder.
Many older Australians rent, and families tend to think that changes are out of the question. They are not always.
Various modifications are temporary: removable grab rails, portable ramps, over-toilet frames, shower chairs, bed rails, sensor equipment. They're all non-invasive and do not need approval from the landlord, as there is no permanent change.
Landlords more often agree than families hope, where the change is beneficial to the building or reversible at the tenant's expense. Ask in writing, be specific, and be willing to restore.
Residential tenancy law differs across the states, with some states having provisions on adjustments for disability or accessibility. Don't assume, ask your state's Tenancy Authority.
When talking to a landlord, an OT report helps a lot, as it provides a documented clinical need instead of a preference.
Community and social housing providers typically have procedures in place for accessibility modifications and are more likely to be able to work with you than a private landlord.
When modification is actually not an option, the next question is whether the property can be made suitable with portable equipment or reconfiguration (for example, relocating a bedroom downstairs), or whether moving is the better solution. Before making any decision, it is important to get an OT perspective.
Yes. There is no contribution for occupational therapy care, as it is clinical care within Support at Home and the NDIS. The equipment and modifications it suggests come from capital funding, not from your support hours, so there is no reduction in your support hours.
Ideally an extra bedroom with a door that closes. At least a well-defined area with an adequate bed that is not a walking path. Having the overnight care worker sleep on a couch in the living room doesn't always work out, and a tired overnight worker is a less safe overnight worker.
Most falls occur there, and it's often the most valuable modification for that reason. Grab rails positioned by an OT, a shower chair, non-slip floors, level access instead of a step, and thermostatic taps to prevent scalding. The space required for a worker to stand next to the person also plays a larger part than anticipated.
These are usually funded from capital, not support hours, and include things such as adjustable beds, pressure-relieving mattresses, hoists, shower chairs, grab rails and ramps, as well as bathroom modifications. The usual way in is an OT assessment.
Agree access in advance, such as a key, a lock box or coded entry, and what to do if it doesn't work out. For units and apartments, arrange fobs, intercoms, lift access and visitor parking once, not with each new worker.
Prepare a no-go room, and make clear in advance what spaces are shared and what the quiet times are; put the guidelines on one page before everyone gets started. There are usually more unstated expectations than real conflicts in these.
Frequently and substantially. A hoist can convert a two-worker transfer into a one-worker transfer. A pressure-relieving mattress can reduce overnight repositioning enough to make a sleepover safe instead of active overnight support, which is worth tens of thousands of dollars a year.
A reasonable working environment: a place to store their bag, a bathroom, a break room and a home with no hazards. It isn't a courtesy; it matters whether workers stick around, and turnover is the number one danger to any long-term care arrangement.
A single support plan, a one-page practical brief for new workers, medication information, emergency and escalation contacts (including after hours), equipment information and supplier contacts, and a shift log. Keep it easily visible, because a folder in a drawer won't be used.
Schedule the OT assessment. It has no cost, unlocks separately funded equipment, and almost all of the rest of the setup follows.
Support Network provides overnight and 24-hour support services nationally, and will help you plan the practicalities before care begins. See our 24 hour care services or call 1300 671 931.