Category Archives: caregivers for the terminally ill

A Caregiver’s Dilemma: Is the Patient Better Off at Home?

In caring for someone we love the question arises, what symptoms can be managed?  What aspects of the situation are beyond the scope of a medical professional?

Beyond our capabilities?

When we know that someone we love is dying, we suffer too.  We have our own sense of loss to deal with, added to the uncertainty of our role in caring for our loved one. 

To even contemplate looking after a dying person at home is daunting, challenging. 

But we know that some who are familiar with these situations, like hospice nurses Callanan and Kelley, maintain that the best care for a person who is ill is most often that given by family and friends in the familiar surroundings of their home.

There are undoubtedly physical symptoms. 

Dry mouth, weight loss, fragile skin and pressure sores, nausea and vomiting, constipation, diarrhea or incontinence, and breathing difficulties are just a few.  No one patient will have all of these symptoms, but in general, some physical symptoms are to be expected. 

For most of these, medical professionals can offer remedies.  In others, keeping the patient comfortable can be a matter of routine. 

In Final Gifts, Callanan and Kelley suggest that most physical symptoms can be alleviated to a large extent.

Pain is best handled by giving regular moderate doses of painkillers, rather than ‘holding off’ until the pain becomes unbearable and then taking a large dose.  The authors state that regular pain medication in moderate dosage can be increased over time as the pain increases, and in the meantime, the patient will be more comfortable overall.

What can’t be controlled?  These are personal attributes: the patient’s temperament, their response to the situation in which they find themselves. 

Dealing with emotions and attitudes requires some detective work on the part of the caregiver, some skillful prodding. 

It is not possible for you, the caregiver, to sort out these issues but hopefully, by being aware of what the patient is feeling and needing, by listening to and discerning just what they are trying to communicate, you will be able to assist them in finding ways of dealing with emotional issues.

I cannot emphasize enough how helpful I have found the wealth of knowledge and sound, practical advice given in Final Gifts, Understanding the Special Awareness, Needs and Communications of the Dying.

These hospice nurses have learned a great deal about death and those who are terminally ill, and if you are in a situation of caring for someone on this final journey, this book is a travel guide that will see you both safely home.

Hospice: An Attitude We Bring to Our Loved Ones.

When we are caring for a loved one who is experiencing a terminal illness, how can we best offer our support on their final journey?

We want to provide the best possible experience in these challenging circumstances, but how do we do that?

Fortunately, two full-time hospice nurses with experience both in-home and in hospital situations, have written a book about the attitude we need to have in dealing with someone who is dying.

In their book titled Final Gifts: Understanding the Special Awareness, Needs and Communications of the Dying, authors Maggie Callanan and Patricia Kelley, offer a clear and comprehensive guide to bringing comfort to those who are making this final metaphysical journey.

Callanan and Kelley emphasize that hospice is not simply a place, but also an attitude.

Historically, hospices were initially a part of the medieval landscape, providing rest for travellers as they journeyed on pilgrimages to holy sites.  In the late 1800’s, two Irish nuns revived the concept in Europe as a compassionate opportunity for travellers who were weary or ill.

In 1967, Dame Cicely Saunders, a British doctor, founded the current hospice movement with the conversion of an 18th century hospice into the modern St. Christopher’s Hospice, in a suburb of London.

Dame Cicely has said that hospices are: “…for the care of the dying on a metaphysical journey from this world to the next.”  Addressing those who are housed within, she offers these words of solace:

“You matter because you are.  You matter until the last moment of your life, and we will do all we can not only to help you die peacefully, but also to live until you die.”

This affirmation helps us to understand some goals of treatment of the dying:

  • To keep them in the environment which is least threatening. For most people this will be their home, in which they are cared for by family and friends.

  • To give them as much information as they wish to have, no more and no less, about their illness, about what is going on in their body and how the illness and its symptoms are being treated. About how their disease is likely to progress, and if the patient wishes, even the way in which they will die.

  • To mitigate a possible ‘out-of-control’ feeling, some patients can be given partial or complete control of their medications and treatment regimes.

  • To ease emotional discomfort caused by depression, fear, anger and/or anxiety, it is important to determine how the patient is dealing with these emotions. Then determine what assistance may be beneficial.

  • To alleviate spiritual discomfort which may arise from a personal questioning of the value of their life, such as, was it worthwhile? Were people helped and lives bettered because they lived?  Support  from their religious leaders, for those who have  accepted a particular faith, may be helpful.

  • To overcome issues arising from possible social abandonment in circumstances where family and friends feel uncomfortable coming around. They may not want to interfere, or may not know what is helpful even if they would like to offer assistance. How can their participation, if desired, be encouraged?

As Callanan and Kelley point out, this is the final journey for a person who has been significant in our lives.  We owe it to them and to ourselves to provide loving and thoughtful support.  This book will help you to do just that.