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From Angela Morrow, RN, former About.com Guide
Updated December 28, 2009
About.com Health's Disease and Condition content is reviewed by the Medical Review Board
∑ Caring for Parents
∑ Caring for Elderly
∑ Skin Care Tips
∑ Caring for Aging Parents
∑ Caring for Elderly Parent
Being a caregiver for someone with a chronic or life-limiting illness is stressful, exhausting and, at times confusing -- while usually quite rewarding, as well. Once the ill person starts the dying process, the task becomes more demanding and the emotions more intense. You may find yourself wondering if youíre doing the right thing, saying the right thing, even thinking the right thing.
Weíll look at some of the more practical things you can do as you care for your dying loved one but itís important to keep in mind that every individual, family, and situation is different. Words of wisdom and advice from family, friends, and professionals may not always apply to you and your situation. Trust your instincts and chances are you will be doing just the right thing for your loved one.
As one begins the early stages of the dying process they will grow weak and become increasingly sleepy. This becomes more pronounced as the process continues toward death. This is when caregiving often becomes more difficult and the work intensive.
The two things you must focus on as your loved one becomes weaker: safety and skin care. Safety may begin as rearranging your home to allow your loved one to move about more easily (see Home Safety for Caregivers). This is also the time you should consider durable medical equipment (DME), such as a hospital bed, walker, wheelchair, or bedside commode, if you havenít done so already. Having the proper medical equipment and enough space to use them properly can prevent falls and other accidents.
Skin care is also vitally important during this time. As a person spends more and more time in bed or sitting in a chair they become at risk for developing pressure sores on their body. Pressure sores, also known as decubitus ulcers or bed sores, are a result of continued pressure on the skin, causing decreased blood flow to the area. The problem may be compounded by friction on the skin from repositioning or sliding down in the bed and from lack of adequate nutrition.
Take care to keep your loved one's skin clean and dry. If they are wearing adult diapers, check the diaper at least every two hours while youíre awake and change it if it becomes soiled.
Itís also important to change your loved one's position in the bed every two hours while your awake if they are unable to do so themselves (see How to Reposition a Patient in Bed). Alternate between laying them on their back and turning to the right and left sides. Keep a lot of pillows handy. You will want to place one at your loved ones back, one between their knees, and perhaps one under their arm when they are on their side.
Check their skin often, especially at the base of the spine (the tailbone), heels, elbows, and hips. Look for any areas of pinkness or redness. Gently massage discolored areas with lotion to stimulate blood flow. You may elevate the heels off the bed with pillows by placing the pillow under the ankles with the feet hanging off. You can relieve pressure on the elbows in much the same way Ė place pillows under the upper or lower arm making sure the elbows arenít touching the pillows or the bed.
If your loved one already has a pressure sore or develops one while you are caring for them, donít punish yourself. Even with meticulous care, patients can still develop them. Be sure to alert your health care provider to the wound and they can develop a plan to care for it properly. They may also recommend an air mattress to provide additional cushioning and relieve pressure.
An appetite that has gradually decreased may dwindle all together as one approaches the very end of life. Your loved one may tolerate small bites of soft food or may refuse to eat at all. A time may come that they refuse to drink as well.
This is usually something that is very hard for the dying personís loved ones to see. We equate food with health, and feeding people is viewed as an act of love. Watching your loved one refuse food and fluids makes their impending death a reality. Not being able to show your love with food may leave you feeling helpless.
Rest assured that the lack of eating and drinking is causing you more distress than your dying loved one. Hunger and thirst are rarely a problem at the end of life. Continue to offer a variety of soft foods as long as your loved one is conscious and allow them to refuse it. Also continue to offer sips of water or other drinks of choice as long as they are conscious.
While patients rarely complain of thirst at the end of life, a dry mouth can be a problem. Lubricate your loved ones lips with a small amount of petroleum jelly or other lip balm to keep them from cracking. You may moisten their mouth with a few drops of water from a straw or a moistened toothette swab, which is a small sponge on the end of a stick. This can be done while they are awake as well as once they loose consciousness.
See Where Did Your Appetite Go? and Artificial Nutrition and Hydration at the End of Life.
Terminal restlessness is a syndrome that is seen in many dying persons. Some studies have shown that nearly 80% of dying persons will experience some degree of anxiety or restlessness. Signs that your loved one is restless may include inability to relax, picking at their clothing or sheets, confusion and agitation, and trying to climb out of bed.
Some causes of terminal restlessness are reversible such as pain, a full bladder, constipation,and side effects of medication. If the cause cannot be identified or if the symptoms persist after treatment, your loved one may benefit from an anxiolytic such as lorazepam. Itís important to notify your health care provider as soon as symptoms of restlessness start. If your healthcare provider can identify the cause and treat it, it can make an enormous impact on your loved one's final moments and your experience in caring for them.
Itís normal for your loved one to have significant temperature changes near the end of life as the body losses its ability to self-regulate. You may notice that your loved one has a fever and is sweating profusely or they may feel cool to your touch and shiver. There are some easy steps you can take for either problem.
If your loved one is running a fever and is able to swallow pills, you may be able to give them acetaminophen (Tylenol) tablets and if they are unconscious, a Tylenol suppository. Acetaminophen is an effective anit-pyretic, or fever reducer, and pain reliever.
If you are caring for your loved one at home with the assistance of hospice, you may have already talked about a plan of action if a fever develops. Many hospices use a prepackaged kit of medications for end-of-life symptoms, sometimes called an emergency kit or hospice comfort kit, and instruct caregivers on their use. Most of these kits include acetaminophen in some form.
Another thing you can do to reduce a fever is to use cool compresses. Apply cool, damp washcloths to the forehead, neck, and armpits. You should never place ice or ice packs directly onto skin so wrap ice packs in towels before applying them. Check the area under the compress often and remove it after 15 minutes.
Dress your loved one in a cotton t-shirt or night gown, or use a hospital gown if one is available to you. If you feel like you need to cover them, use just a sheet. If your loved one is sweating a lot, check the bedding often and change if necessary.
If your loved one is shivering, adding a blanket or two should be enough to improve their comfort. You may also want to add a pair of soft, comfortable socks. You might notice your loved ones toes, fingers, nose, and lips appear grey or blue. This is normal as circulation to the body slows down. Changes in circulation are often most noticeable in the feet and once they become mottled and blue or purple, time of death is near.
It may become difficult to tell whether your loved one is in pain when their level of consciousness diminishes. Evaluating their pain is vital to ensuring their comfort and your observation of body language and other clues will become increasingly important as your loved one becomes unable to tell you if they feel pain. Some signs that your loved one is having pain or discomfort include:
∑ Furrowed brow
∑ Guarding an area of pain
∑ Restlessness or agitation
∑ Increase in respiratory rate, or breaths per minute
∑ Increased heart rate or pulse
You may notice these signs occur with certain movements or activities when youíre providing care or they may happen spontaneously. If your loved one has been on a regular schedule of pain medication, itís important to maintain that schedule even if they loose consciousness. Your healthcare provider should have developed a plan for you to give pain medication should your loved one become unresponsive.
If your loved one has not been taking pain medication regularly itís still important to monitor them for signs of discomfort. It is helpful to have medications on hand in case pain develops suddenly. Morphine is often included in hospice comfort kits along with the Tylenol suppositories mentioned above.
More information on Pain Management in Palliative Care
Dyspnea, or shortness of breath, is often a symptom that is distressing not only for the dying person but for their family/friends as well. If your loved one is breathing rapidly (more than 24 breaths per minute) and appears uncomfortable, morphine may be the treatment of choice.
Morphine has wonderful pain relieving properties but also does an excellent job at treating dyspnea. It slows breathing down, allowing the body to take more effective breaths while reducing the sensation of breathlessness in the brain. Other opioid medications may help as well if your loved one is allergic or intolerant to morphine.
Other things that can help dyspnea include:
∑ Administering oxygen
∑ Directing a fan on low speed toward your loved ones face
∑ Providing fresh air
Another common and unsettling occurrence near the end of life is what many know as the ďdeath rattle.Ē This is essentially loud, wet-sounding breathing that happens when saliva builds up in the throat and airway passages. Most of us are able to cough, clear our throat, and swallow these normal secretions -- but the dying person looses their ability to clear them effectively. The resulting sound can be more distressing to the loved ones than it is for the dying person. Medications that dry up excess secretions, such as atropine and scopolamine, are usually effective in treating the loud breathing.
Near the end, you may notice your loved one has irregular breathing. This type of breathing is referred to as Cheyne-Stokes respirations. It is classified as breathing that is sometimes very fast and other times quite slow, and may including periods of apnea, or no breathing at all. This type of breathing may not need any treatment at all but if your loved one seems short of breath, treatment for dyspnea may be helpful.
Breathing slows or continues with Cheyne-Stokes respirations until it stops altogether. Death has occurred when the heart stops beating and breathing has stopped. Other signs of death include:
∑ Pupils that are fixed and dilated (large)
∑ Skin is pale or bluish
∑ Body becomes cool
∑ Eyes remain open
∑ Jaw is slack and drops open
Once death has occurred, take your time to grieve and mourn or perform spiritual ceremonies. When you feel ready, call your hospice agency or the coroner if your loved one was not on hospice. You may want to check local laws about deaths in the home; some areas may require that you call 911.
Call the mortuary or funeral home to alert them of the death. Most hospice nurses will do this for you when they come to pronounce death. The mortuary will pick up your loved one's body. If you need assistance with funeral planning, please read How to Plan a Funeral or Memorial Service.
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