This blog is designed to help family and friends who are caring for a dying relative or friend at home. This can be a very meaningful experience but at times can be terrifying. While most of us have experienced grief or loss of some sort, being confronted with our own mortality, or the death of a loved one, is something we find difficult to talk about. Often the diagnosis of cancer leads to multiple hospital admissions, specialist appointments and cycles of chemotherapy and radiotherapy. For some, this will lead to a cure; for others, a remission of their disease; and for others the disease may progress despite the best in medical intervention. Whether you are caring for someone who is young or older, this can be a challenging and confronting time. Many people don’t want to be cared for in hospital–or even a palliative hospice–but as the end approaches they want to be cared for in their own home with their family and friends around them. Some will want absolutely no further “medical” interventions while others will be interested in short hospital visits for interventions like palliative radiotherapy to bone to reduce pain from cancer for example. Many people are scared of hospice because they think “that’s the waiting room of death.” Others are scared of even a short hospital visit because they think they “will never come home.” Whether the person you are caring for is a relative or friend who wants to die at home, it is possible to provide good home-based care. Some relatives worry that the care they are giving may not be as good as hospital care, but what I usually see is that friends and relatives are able to provide for their dying loved one in remarkable ways. It is not an easy task, and sometimes there is just one person at home providing the care that it would require a team of nurses to do in hospital. This means that sleep is interrupted, friendships and social life changes, and suddenly you find yourself operating as a nurse, a nutritionist, a physical therapist and a counsellor as you get to know medications, dosing times, pain scales, bowel care and mouth care. The wonderful thing is that in most places there is access to support from trained palliative care professionals–either in person who can visit at home regularly–or via your GP or even through a telephone call to the nearest hospice. Where as previously many aspects of care required a hospital admission, these days it is possible to provide a range of interventions at home including oxygen, special medication devices to deliver fluids or medications under the skin, nebulisers and humidifiers. Some GPs or palliative medical specialists are happy to do home visits to perform specific procedures and provide expert assessment and management plans to help keep your loved one at home.
One important thing to say at this point is that sometimes–for reasons of pain or other symptoms–or because of carer fatigue or injury–a hospice admission becomes necessary for end of life care. This is not a failure. Families often describe the relief of going to hospice–even when their loved one has wanted to try everything possible to avoid it: Letting the nursing and medical staff take care of your loved one at this special time can mean that you are able to simply enjoy being a son or daughter or friend again while others look after the physical care. Hospice might mean that you are able to get some much-needed rest and be refreshed and in a much better frame of mind to cope with the demands of this time. A hospice admission might also allow for fine tuning of medications which can sometimes be difficult (though by no means impossible) at home.
But whatever the case, I hope the information provided here will help answer some common questions and concerns about caring for a loved one who is dying at home. You will find information here on caring for your self, on managing various symptoms such as shortness of breath, cough, panic etc. You will find information on when (or if) to think about hospice care, about what to expect in the hours before death, and what to do once your loved one dies. You will also find information on grief and bereavement and what to expect in the year following the death of a loved one.
If you are unsure about something or have a specific question, please feel free to make a comment or ask a question. These may take 7 to 10 days to be addressed, but if there are a number of questions around a similar theme, the material will be included in the appropriate page. All identifying details will be excluded.