How to Provide Comfort During the Final Stages of Life 

A CAREGIVERíS GUIDE

by Hank Bruce

 

Naturally the comfort of our loved one is our primary concern. There are physical and mental changes taking place as the body prepares to go out of business.  As this rather orderly progression of symptoms tells us what is happening, itís important that we remember one important fact.  This once vital and vibrant individual is still a fellow human being.  Even near death, he or she has feelings that can be hurt by our careless words and actions.  As a fellow human being they deserve respect, compassion, love and dignity.

Body temperature

Extremities will become cool to the touch as circulation decreases.  This is because the body is concentrating on maintaining the temperature of the internal organs.

A warm blanket may be helpful, but donít wrap tightly because this can cause pain.  The skin can become very sensitive, and even sheets touching the body can be painful.

Donít use an electric blanket.

Skin color may change as circulation decreases.  The color may range from pale to sallow, or blue.

Fever may occur as the liquid intake decreases. Because, at this stage, the body has difficulty maintaining its proper temperature, donít give cold baths; a moist cloth on the forehead will usually help.  Contact the doctor or hospice nurse, because a fever can also indicate an infection.

Restlessness

Motions may be repetitive, such as moving legs or arms, pulling at clothing or rolling from side to side.  This is usually due to decreased oxygen to the brain and changes in metabolism.  It isnít necessarily an indication of pain.

Avoid restraining if possible.  Try to calm by playing soothing music, talking softly and lightly massaging hands, arms or legs.  A foot rub can often calm this restlessness.

Breathing and Congestion

Breathing patterns will change, sometimes due to positioning.  If possible, have the care receiver sit up several times a day.  This helps prevent fluid buildup in the lungs.

As circulation slows and the oxygen supply to the internal organs decreases, respirations will slow.  Helping the patient roll onto his or her side may help, when sitting up isnít practical.

Congestion is often the result of the bodyís inability to cough up fluids accumulated in the lungs.

Gurgling sounds can result from the decrease in liquid intake.  A moistened swab in the mouth can help to make the patient more comfortable.  Check with a medical professional.  Sometimes propping the patient up in bed is helpful, sometimes lying flat relieves the strain. 

The congestion doesnít mean that we, as caregivers, have been negligent. It is a natural part of the process.

In the final stages, congestion doesnít mean there is pain or discomfort.  Cheyne-Stokes breathing is a breathing pattern that consists of shallow breaths, with periods of up to a minute with no breathing at all.  Our job as caregivers is to bring comfort, by speaking softly, providing a loving touch, singing or playing gentle music.

Appetite

The person we are caring for will gradually experience a decrease in their interest in food and fluids. This is natural because the system can no longer expend the energy to process the food.

We fear that this is starvation, but this isnít the denial of hunger.  It is the absence of it.  We arenít failing when we canít make our loved one eat.

We shouldnít try to force them to eat, because this can cause discomfort and pain.  We can ask what they would like, offer a traditional favorite, but should not shame, scold or demand that they eat.  Crushed ice, ice chips, frozen juices, Sno-cones can all be given to help keep the mouth and throat comfortable.  But care should be taken not to cause choking.

After all intake has stopped, moist swabs can be used to keep the mouth and lips comfortable.

Incontinence

As the bodyís systems continue to close up shop, urine will become dark.

This is called concentrated urine.  This indicates a decrease in urine flow.  At the same time, bladder and bowel control may decrease.  As circulation decreases, the muscles begin to relax.  This is normal, but can be embarrassing for the patient.

Our job is to keep our loved one clean and comfortable.  This is an act of love that isnít as difficult as you might think.  It is important to prevent rashes and sores.  Itís also a matter of dignity.

A catheter may be necessary, but prolonged use can cause severe discomfort and pain.  A catheter can also provide a point of entry for disease.

Adult diapers are a viable option.  If communication is still possible, discuss this with the care receiver.  He or she has a right to make decisions.  Itís a matter of dignity.

Bedpans are cold and uncomfortable.  To understand this better, as a caregiver, put yourself through the indignity of sitting on a cold, uncomfortable, humiliating bedpan.

A bedside commode is a workable solution for as long as the patient can use it.  Then we need to explore other options with the hospice nurse.

Confusion and disorientation

Medications can cause disorientation, confusion, memory loss and speech difficulties, but the simple fact is that most of these symptoms are the result of systems shutting down.

As the aging process takes its toll, memory may fail.  It is only natural to become confused easily and not remember the day of the week or the date.  This is profoundly accelerated with Alzheimerís patients.  But it is also a part of the natural death process.  As metabolism decreases and circulation slows, disorientation intensifies.

Itís difficult to handle being confused, and itís difficult for us, as caregivers, to witness it. We can help by identifying ourselves, carefully explaining time, date and location.  We can provide this basic information each time we come in contact with the patient and save them the embarrassment and shame that accompanies disorientation.  Speak clearly and gently.  It is so easy to get frustrated with this disorientation.  Often it helps to explain why we have to do something, what that pill is going to do, or who is visiting.

This person we are caring for is someone we love, and a fellow human being.  He or she deserves the same respect and courtesy we expect for ourselves.  We need to replace our natural frustration and anger with smiles and kind words.

It is also a fact that as the systems close down, the patient is going to sleep more and more.  This is again due to metabolism and oxygen supply.  Itís all right to simply let the person sleep.  We can sit with them, hold their hand, talk softly or sing to them.  Donít assume that your loved one cannot hear you.

Even in a coma what you say may be heard.  Some claim that hearing is even heightened as one nears death.  Avoid talking about your loved one as though he or she wasnít  there.

 

Death sets a thing significant

The eye had hurried by,

Except a perished creature

Entreat us tenderly

 

To ponder little workmanship

In crayon or in wool,

With ďThis was last her fingers did,Ē

Industrious until

 

The thimble weighed too heavy,

The stitches stopped themselves,

And then Ďt was put among the dust

Upon the closet shelves.

 

A book I have, a friend gave,

Whose pencil, here and there,

Had notched the place that pleased him,--

At rest his fingers are.

 

Now, when I read, I read not,

For interrupting tears

Obliterate the etchings

Too costly for repairs.                 Emily Dickenson

 

From The Family Caregiver's Journal by Hank Bruce. Copyright © 1998 by Hank Bruce. Excerpted by arrangement with Petals and Pages Press. $14.95. Available in local bookstores or call 888-275-7191 or click here.