“The simple act of caring is heroic”
Here are some things to be considered to facilitate a smoother experience of caring for a terminally-ill loved one at home:
- Accessibility and safety of the space
- Ensuring comfort of your loved one
- Working with the medical care team
You might need to make some changes at home, such as move furniture around and find room for equipment that your loved one will need.
Especially if your loved one is still mobile, you can get a suitable mobility device (walking stick, quadstick, wheelchair) to help him/her get out of bed and continue to take part in daily life. Check for kerbs that may be dangerous. These kerbs can be changed into ramps to ease mobility if it is suitable. As much as possible, keep the hallways clear. Remove rugs and other items that are easily tripped over or slipped on. Consider having slip-resistant treatment or adding anti-slip mats on slippery floors. If your loved one needs to hold to something for support to be able to move, consider installing some grab bars in the house.
If your household is eligible, you can consider the Enhancement for Active Seniors (EASE) programme that subsidises selected house modifications.
Simple things such as the view from one’s bedroom window, familiarity of family routines, being close to family and neighbours, can provide comfort to someone who is terminally ill.
Consult your loved one on how to setup the room to his/her comfort. However, if your ill loved one has difficulty communicating their immediate feelings and responses, here are some things that you can consider to provide the most comfort to him/her based on your knowledge of his/her personality and preferences.
- Level of noise. Is your loved one in a room where lots of shared home appliances, such as the television set or the radio, are often switched on and off?
- Preferred sounds. Are there any songs or sounds that your loved one likes to hear?
- Amount of light. Can the sun or artificial light from outside be easily blocked out by curtains? If the room is too dark due to the colour, explore the feasibility of painting it in lighter colours.
- Temperature. Is the temperature in this room regulated, or does it fluctuate? What is your loved one’s preferred temperature?
- Wind/fan. Is the fan or air-conditioning placed in a way that your loved one would like?
- Comfort items. Is there a specific pillow, blanket, soft toy, or pet that your loved one likes to have by his/her side? Are there any memorable or photos of the family that can be displayed for loved one’s access and view?
- Privacy. Are there curtains or partitions that can be used to give your loved one more privacy when needed? In what situations would he/she prefer more privacy or to be out in the open?
Your loved one should be supported and cared for by a medical team that ensures his/her comfort in the last days. When family members and the terminally-ill person decide to have the home as the final place of care, the medical team may suggest for the family to use some medical equipment to provide adequate care for the ill person.
Putting medical equipment at home can be unfamiliar for many people. When adding medical equipment to the home, you can consider allocating a space that is big enough, has electrical plug points (if needed), does not obstruct movement, easily accessible, and suitable to incorporate into your daily routines.
One of the major pieces of equipment is the hospital bed. Although it is a big change from a normal bed, a hospital bed can make it easier for your ill loved one to receive care, especially if he/she has difficulty getting out of or changing positions in a normal bed.
A hospital bed takes up a significant amount of space. You might also need to make room for other medical equipment around the bed. Where a regular bedroom is not big enough to be accommodate these new equipment, consider setting up the hospital bed in the master bedroom or even the living room instead. The location of the bed should ideally be easily accessible for family members and caregivers while following the preferences and preserving the dignity of the ill loved one.
During routine visits from the medical team, it is also helpful for family members and caregivers to note and report the loved one’s condition and responses. Having a dedicated place to store all medications for the loved one will make it easier for you to show and communicate with the medical team.
Family members and caregivers can also learn how to respond in case of emergencies or sudden drastic changes in the ill loved one’s condition. With support and guidance from the medical team, you can consider putting together an emergency pack and preparing plans for action.