Caregiver
Changes at the End-of-Life
s the body prepares to die, all of its systems begin
to slowly shut down. While every person’s experience
is unique, evidence of shutting down usually begins with
a decrease in appetite and activity level. Eventually,
the other systems follow with:
.......- changes in breathing
.......- changes in mental processing and social interactions
.......- changes in elimination of waste
Changes in Appetite - a person caring for an ill individual should allow the patient to dictate their need for nourishment. A caregiver’s instinct to feed a patient should be discouraged if a decrease in appetite and thirst is noted. This is especially true during the final stage of life. With a terminal illness, the physical systems of the body begin the process of shutting down and start to conserve energy. This condition may be observed when the patient spends more hours of the day asleep than awake; they may be difficult to arouse as they prepare to detach from their surroundings and loved ones.
Force feeding a dying person, often driven by emotions, can actually cause suffering. The dying body can not manage fluids normally. The lungs may already be filling up with fluid, and providing additional liquid may make the problem worse. Accumulation of edema around tumors may increase pressure and aggravate the pain. Forced feedings often leave the person feeling bloated and nauseated. And, increased urine output increases the need for trips to the bathroom when the person is already extremely weak and frail.
When a dying person is experiencing dehydration, their most common symptom is a dry mouth. If the patient is conscious, they can be offered ice chips. It is also helpful to cover their lips with a protective coating, such as Chapstick. Avoid the drying effects of lemon and glycerin. Encourage fluids only as the dying person desires.
Changes in Activity – Often, patients will start to have less of a desire to continue with the activities that used to bring them pleasure. This can include even sedate activities, such as knitting or watching television.
This change is due to both physical and emotional reasons. Physically, the person may have increased weakness, be unsteady, or have problems pulling themselves out of a chair or bed. This may discourage them from attempting some activities. Emotionally, they may be lethargic or confused, which can lead to forgetfulness and frustration as they try to accomplish tasks. They may also be grieving their loss of ability, and feeling their loss of control.
As a caregiver, you need to be careful of your body mechanics when lifting, or otherwise assisting, the patient – being mindful of the patient’s increased risk of falling. Things to consider include the fact that it is easier to get a person from the bed to the chair than the chair to the bed. If you do not think that you will be able to return the patient, you might consider waiting for assistance before moving them.
Emotionally, a caregiver should let the patient make as many of their decisions as possible. Taking away their ability to make decision can undermine their feelings of control. You can try to further empower the patient by modifying some of the activities that give them pleasure. Making them a part of their daily activities, even in a modified way, can let them still feel like an active member of the family. Some examples include helping prepare meals while sitting at the table, recording family memories/history onto audio or video instead of writing memoirs, or providing movement with range-of-motion exercises (where the caregiver assists in moving the limbs).
Changes in Breathing - There is a natural progression of altered breathing in a person who is dying. This change is often more distressing to the surrounding family members than to the patient experiencing them. During a person’s last few days, their breathing might be characterized by clusters of waxing and waning, followed by apnea (a temporary pause in breathing) which can last as long as thirty seconds. This indicates a decrease in circulation to the internal organs, but not necessarily discomfort by the individual. It can, however, lead to an inability to cough and clear the airway, creating rattling sounds of congestion that come from the chest and which may be very loud. Irregular breathing or panting may appear abnormally rapid or slow. Breathing patterns may seem to come and go and become generally unpredictable.
Assistance may be provided by elevating the person’s head. Also, turning them on their side may soften congestion. Sometimes, oxygen or medication to decrease the congestion or quiet rapid breathing may be recommended. Your hospice team can assist if any distress is noted – and, your sitting by the bed while holding the person’s hand and speaking in a soft, soothing tone can be very comforting as well.
Changes in Mental Processing & Social Interactions– It is common that a patient may begin to detach from surroundings and relationships as they near the end of life. This may be evidenced by a decreased need to communicate with others. They may sleep more hours in a day than they are awake and may elicit a lack of desire to see even family or old friends.
This is often the point where caregivers or family members get anxious. They usually expend great amounts of energy trying to get the patient to be more alert, but to no avail. Instead of angsting over this, loved ones should sit quietly with the patient at their bedside. Watch a movie together, play cards or Monopoly, or simply watch the snow fall together. Be present in the moment, even silently keeping them company. If you talk with them, speak from the heart. Tell them how important they are to you or they impacted your life.
People might be hesitant to respond this way, fearing that this might be an indicator to the patient that the caregiver knows they are dying. However, more often than not, the patient has already been aware of their impending death and has been waiting for others to acknowledge it.
Just remember, the changes the person is undergoing in their mental processing does not change their personality. Honor them as you know them - if they always enjoyed humor, they will still appreciate it now.
Changes in Waste Elimination – Along with a diminished appetite comes a reduction in output. Urine can become darker, more concentrated, and more odorous. Additionally, constipation may cause pain or discomfort. Reasons for these changes can be a lack of activity, reduced food and fluid intake, a decrease in kidney circulation, general weakness, or even pain medications. To help prevent constipation, a caregiver can try to feed the patient high fiber foods, fruit juices, or increase fluids and activity – when possible. If this does not work, consult with your hospice provider regarding laxatives and stool softeners.
A patient may also lose control of bladder and/or bowels, as the muscles in that area begin to relax. If bladder control becomes problematic, adult diapers or absorbent pads can be helpful. Another option may be to place a catheter in the bladder. Speak to you hospice representative to discuss this possibility further.
Dealing with a Patient’s Pain
Pain is truly in the eyes of the beholder. It is a subjective experience which varies with each individual. Cecily Saunders, pioneer of the Hospice movement, originated the term, “total pain,” in the late 1960’s. Her approach in diagnosing and treating pain was to consider all aspects of a person’s life, including physical, emotional, and spiritual – knowing that emotional or spiritual suffering can exacerbate physical pain. She understood that, if a person recognized the nature of their pain, it was often easier for them to cope with it.
Most pain can be treated and managed. Sometimes, a caregiver can administer simple comfort measures to help alleviate some of the discomfort. Repositioning pillows, massage, cool cloths and/or heat may provide some relief for the patient. For higher levels of physical pain, it may be necessary to administer medication. The best time to treat pain is when it first begins. If you know the patient’s pain may increase with an activity, give the medication prior to the activity.
To reduce discomfort from an emotional perspective, the caregiver can create a relaxing atmosphere for the patient. Most individuals’ senses are heightened at this time. They often have low tolerance for loud noises, strong scents, bright lights, heavy blankets, or even touching.
Use a calm approach as you learn to be a good listener and follow the cues from the patient. Allow and encourage the verbalization of feelings. Communicate honestly and empathetically with person. Sometimes, diversions such as music, reading, or visitors can assist in relaxing the patient.
Spiritual disrest can stem from an individual’s search for their life’s meaning, the unfairness of their situation, fear of what’s going to happen, or what happens after death. Again, being a good listener is important. Have the patient recall his or her accomplishments and prior pleasurable events. Encourage them to live for today. If you find it difficult to discuss these matters, then find someone – such as a member of the clergy, a family member, or a friend - who can. Spiritual questions are very personal, so do not bring in someone who is not wanted, as it can backfire rather than resolve problems. Remember, not all spiritual questions can be answered…
Caring for the Caregiver
Caregivers have a huge responsibility. Caregivers, as well as the patient, can often feel overwhelmed and confused. A caregiver must always remember to take care of themself.
- Do not expect yourself to be perfect. Remember that you are human and will sometimes make mistakes.
- Stay in control of your life - don’t allow your loved one’s illness or disability to always take center stage.
- Be good to yourself. Remember to love, honor, and value yourself. What you’re doing is very difficult; you deserve some quality time for you.
- Schedule time away every day to rejuvenate yourself – take a hot bath or nap, visit a friend, read a book, go shopping, etc.
- Recognize the difference between caring and doing. Be open to technologies or ideas that promote your loved one’s independence.
- Identify a confidant, family member, friend, or professional whom you can talk to and who understands your role as a caregiver.
- Watch for signs of depression – don’t delay seeking professional help if you need it.
- When people offer to assist, let them by suggesting specific things that they can do.
Sometimes, the caregiver needs to ask for assistance. While many friends and family members may have good intentions, they really do not know what those needs are. A caregiver should not wait for somebody to offer assistance. By asking for it directly, it will aid the patient, the caregiver, and the well-intentioned friend or family member.
For more tips, go to www.caregiving.org.
Anticipatory Grief
Coming to terms with dying is certainly a loss experience and an occasion for grief. Dr. Kubler Ross has identified five stages of grief and loss. Not everyone will experience all of these stages, or, if all
are experienced, they won't necessarily occur in this
particular order.
Kubler-Ross' first stage is Denial, where people are
unable or unwilling to accept that the loss will occur.
It can feel like a bad dream, that they are waiting to
"wake up" from - expecting that things will resume to normal.
After people accepted the impending loss, they may begin to feel Anger from the unfairness of it. They may even be angry at the person who is dying. Feelings of abandonment may also occur, and thoughts of “Why me?” may be prevalent.
The next stage is usually Bargaining. Here, people plead to their "higher power" to change the outcome. This stage usually involves promises of better behavior or significant life changes in exchange for a reversal of the inevitable outcome.
Once caregivers recognize that Anger and Bargaining are not going to reverse the situation, they can sink into the Depression stage, where they confront the inevitability and reality of the loss and their own helplessness to change it. During this stage, caregivers may cry, experience changes in sleep or eating habits, or withdraw from other people or activities. They may even blame themselves for having caused or contributed to the situation - whether or not it is justified.
Kubler-Ross’ final stage is Acceptance, where individuals have processed their initial emotions of grief, accept that the loss will occur, and can, once again, re-engage in daily life.
