Dr Deidre Morgan is Senior Lecturer at the Flinders University and has more than 25 years of clinical experience as an Occupational Therapist. One of her areas of expertise is how to optimise functional decline at the end of life. In this article, we asked her to share some pointers for preparing to care at home.
What are the top key areas that family carers need to prepare for when caring for a person with end-of-life care needs at home?
As a carer, one of the things you may need to do is help the person you are caring for manage these everyday activities.
It is also important that you do not assume that you know what is the most important to the person you are caring for on any given day, or how they might want to receive care. Ask the person you are caring for:
- what is important to them right now
- what do they want to do for themselves and
- what do they want help with
What changes/modifications and equipment would they need to consider?
The changes a carer might need to make at home will depend on the function (physical and cognitive capacities) of the person who is unwell. This equipment can make the difference between a carer managing or not managing the care of a loved one at home.
Because a person’s function can change quickly, assistive equipment (e.g. an over-toilet frame, shower stool) is often better than making modifications to a home. Assistive equipment helps reduce the impact of some of the symptoms like fatigue, weakness, breathlessness, and pain so and your loved one can manage more easily. Here are some simple modifications and assistive equipment that can help:
- Raising the height of a chair or toilet by e.g. 2-5 centimetres may make the difference between a person needing a little bit of help to stand up or needing a lot of help.
- Sitting on a shower stool can help to manage breathlessness and fatigue whilst showering. It can be safer for someone who feels unsteady on their feet.
- A properly fitted pressure cushion can stop the development of pressure ulcers/sores. It also makes sitting for long periods of time much more comfortable for people who have often lost weight.
You can also ask your GP, local palliative care team, or specialist for a referral to an Occupational Therapist or Physiotherapist who can talk with you about what assistive equipment may be best and how to access it.
"Ask your GP, local palliative care team, or specialist for a referral to an Occupational Therapist or Physiotherapist"
How should carers ensure their own health and wellbeing when caring and living in the same house as the person with terminal illness?
Caring for someone who has advanced disease can be physically and emotionally draining. In the same way a flight attendant says, “Put on your oxygen first and then help another”, it is important to look after your health. If you become rundown or injured you may not be able to provide the care you want to.
Here are some recommendations:
- Ask your GP/local palliative care team/specialist about short-term respite care. This is where your loved one goes into hospital/hospice or an aged care facility for a short period of time so you can get some sleep and refuel.
- Many specialist palliative care teams have volunteers who can sit with a loved one while you go out to have a haircut, play golf, or rest.
- If it is getting harder for your loved one to move around, ask your GP/local palliative care team or specialist to arrange an assessment by an occupational therapist or a physiotherapist. They can teach you the safest and most practical ways to help your loved one manage everyday activities.
If it becomes too hard, tell your GP/health professional. This happens to many people but if you do not ask for help, a health professional may assume you are coping.