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 you’re doing the right thing, saying the right thing, even thinking the right thing.
We’ll look at some of the more practical things you can do as you care for your dying loved one but it’s 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.
Growing Weakness and Fatigue
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 haven’t 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 you’re awake and change it if it becomes soiled.
It’s 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 – place pillows under the upper or lower arm making sure the elbows aren’t touching the pillows or the bed.
If your loved one already has a pressure sore or develops one while you are caring for them, don’t 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.
Decreased Appetite and Thirst
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 person’s 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.
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. It’s 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.