Making Amends/Repairing Relationships
Once you have accepted that your loved one is dying (however tentatively you are able to do so, depending on your own grief process), you may find yourself wishing to spend a great deal of time with this person, helping to make right any wrongs from the past between you (or between the dying person and other loved ones), and to facilitate the saying of goodbyes. You may also wish to organize family gatherings where the dying person's life is celebrated. You can help by contacting family and friends and inviting them to make final visits, as well as asking them for support and help. These final visits can be very difficult and emotional as the reality of the upcoming loss becomes ever more real. It can also be a time of uncertainty, as you and other visitors wonder whether this particular visit will be the very last.
Journaling/Scrapbooking/Family History Taking
As part of spending time with the dying person, family members may decide to collect memories and stories from person before they die. A family history, descriptions of historical events, and memories from happier times can be a wonderful legacy to pass on to future generations. Creating a family scrapbook, a journal, or interviewing the dying person on video and then transferring it to CD, are all ways to leave a permanent legacy.
Before your loved one dies (as soon as you can), verify that all legal and financial matters are up-to-date and in place (click here to return to previous discussion of these matters). If you have not discussed it previously, it is also a time to finalize the dying person's desires about a funeral and burial. Initiating this conversation yourself can bring a great sense of relief to the dying person since he or she might worry about bringing this topic up with you.
Stages of Impending Death and How to Help
Most people are unfamiliar with what happens to a person when they are actively dying. As a result, people often feel helpless and afraid. Even though you cannot stop the dying process, you can help the person be as comfortable as possible.
As the body systems slow down, the dying person will experience a decrease in appetite, thirst, and ability to swallow. These changes will decrease the amount of food or fluids the person can take by mouth. It's important to respect the dying person's food and beverage choices, as well as resist the temptation to urge or force the person to drink or eat more to prolong the time left.
Some people experience nausea and vomiting. This is often caused by pain medications, which can be managed by adjusting the dose or changing the medication entirely. Consult with the health care team to determine whether nausea and vomiting can be controlled or decreased by medication intervention. Nausea and vomiting tend to decrease naturally when death is near, but until that occurs, providing the dying person with ice chips and sips of liquids may be helpful.
You may notice irregular breathing patterns as a person nears death. Sometime the pattern is shallow breaths followed by a long and deep breath, or periods of panting followed by no breaths at all. Some people also have shortness of breath (dyspnea) or make a gurgling/congested sound when they breathe. If the dying person has difficulty breathing, open a window to let in fresh air, aim a gentle fan breeze on the person's cheek, or try different positions (e.g., propped with pillows). Difficult or painful breathing may also be associated with panic and anxiety; therefore treatment with anti-anxiety medications may help. Again, do not hesitate to consult with the health care team for the treatment options.
Along with decrease in blood pressure, circulation of blood flowing out to extremities decreases. The dying person may complain of numbness in his or her legs and feet. They may appear blue, purple, or mottled, and feel cooler to the touch. Adjusting the thermostat, as well as layering clothing and blankets may help.
A dying person may become restless, agitated (jerking, twitching, pulling at bed linens or clothing), disoriented, or confused (unsure about the time and place, or identity of people). Such behavior can be caused by medication side effects, or by pain or other discomforts; so start by determining whether these problems are present and can be addressed. Other techniques to soothe the dying person include playing calming music, dimming overhead lights and using side lights, avoiding sudden noises or movements, speaking in a calm, quiet voice, explaining what is happening in short simple phrases, and limiting the number of people in the room. Touching the person (e.g., holding their hand, stroking their face) can also decrease agitation.
Any new pain or changes in pain levels should be reported to the health care team immediately. There is no reason whatsoever that the person should put up a brave front and "tough out" the pain (unless that is their preference). Palliative care and hospice doctors are experts in pain management. However, they can't help if they are unaware of the problem.
Incontinence (losing control of bowel or bladder function) is not uncommon as death nears. Avoid embarrassing the person by becoming exasperated or belittling should this occur. To avoid painful skin sores, keep the person clean and dry using incontinence pads or adult diapers. You can also make clean up easier by padding the bed with layers of disposable waterproof pads and protecting the mattress with a plastic sheet. Your health care team can also recommend other strategies (such as a catheter) to address this issue.
Some dying people experience episodes of sweating. Using medication to control fevers, remove extra blankets and coverings, adjusting the thermostat, opening a window, sponge baths, and applying cool moist cloths on the head, face, or body are all strategies that can help.
As death nears, the dying person will typically start to withdraw and decrease his or her interactions with friends and family. At the same time, the person will usually spend more time sleeping. During this period, it is important to respect the dying person's need to rest, and limit the number and length of visits by friends and family. It's okay to take advantage of the time when the person is awake, but again, resist the temptation to try and keep the person awake to prolong the time left.
Towards the very end, the dying person will show a decrease in consciousness and responsiveness. You will have great difficulty rousing the person and they will stop speaking and responding to questions. Research suggests that hearing is the last sense to go; so continue to talk to the person even if they are not speaking. Comforting loving words, reminiscing, and giving the person permission to die are all appropriate. However, it is not appropriate to speak about the dying person as though they are not in the room. Continuing to touch the person can also communicate love and comfort throughout the final stage. Eventually, a coma state (in which you are unable to arouse the person at all) occurs minutes or hours before death and the final breath.