Practical Tips for Caregivers

avatar By Solaris Hospice
Application Developer

To be able to take care of another, you must first take care of yourself.

Tips on taking care of yourself:

  • Get enough rest, perhaps naps during the day. Conserve your energy.
  • Exercise. Even a short walk improves sleep and gives energy.
  • Eat well. Choose a variety of foods and drink plenty of water.
  • Reduce stress. Think about what has helped in the past.
  • Take breaks. Relax and think of other things.
  • Pay attention to what your body is telling you. Is it tired, stressed, tense?
  • Nurture your spiritual side. Pursue those things that are uplifting to you.
  • Pamper yourself, especially on difficult days.
  • Avoid unrealistic expectations of yourself.
  • Recognize your needs and limitations and allow others to help you.
  • Set limits. It’s ok to say “no” sometimes.

Tips on helping loved ones:

  • Allow them to talk. Listen without judgment and with only occasional comment.
  • Acknowledge and validate their feelings and let them express their feelings in many ways.
  • Avoid taking any negative feelings personally.
  • Let them have control over their situation as much as possible.
  • Include them in decision making and discussions.
  • Let them do as much as they want to and have the energy for, no matter how slow, painful or difficult it seems to you.
  • Don’t underestimate their pains, symptoms, and fear. They are real and valid.
  • Avoid judging
  • Talk about subjects you used to discuss together, the times you shared.
  • Laugh.

Experience gleaned from years of work with patients and families has shown us that often the best patient care provided is that given by family and friends. Regardless of how capable and efficient a professional’s care may be, the presence and touch of a person who has a close relationship with the patient will provide the greatest gift.

Eating & Nutrition Loss of appetite is a common complaint among people with terminal illness. The many causes for loss of appetite include: pain, fatigue, stress, anxiety, depression, nausea, vomiting, changes in taste sensations, side effects of medications, breathing problems, and constipation. Some patients say their appetite comes and goes while others say they rarely feel hungry.

Some patients say they eat less because food tastes bad, that they have a bitter metal taste in their mouth, or they simply get full too soon. All of these factors are considered a normal part of a terminal illness. If the patient is depressed, antidepressant medications may improve appetite and the patient’s outlook.

If the patient’s disease is advanced and the loss of appetite profound, it is appropriate to recommend food and fluids only as the patient requests. In truth, most hospice patients would prefer to have their families focus less on eating problems and more on other physical symptoms, spiritual issues, and emotional concerns. Following are some tips for particular problems your loved one may be experiencing which may lead to loss of appetite.

Problems with Constipation If the patient is on pain medication, your nurse will ask you to follow a schedule for laxatives and stool softeners to prevent constipation. The usual recommendations for preventing constipation such as increasing intake of food high in fiber and drinking more fluids will not be enough. If the prescribed laxatives are not taken regularly, constipation can lead to impaction, nausea, vomiting, poor appetite and more pain. It is important to take this medication even if bowels are moving. Talk to your nurse if the patient’s bowels become loose so the amount of medication can be adjusted.

Patient tips:

  • Try drinking warm water with lemon juice added in the morning or at bedtime.
  • Try to sit quietly on the commode at the same time each day.

Difficulty Swallowing (Dysphagia) The difficulty or lack of ability to swallow is called “dysphagia.” Often patients with terminal illnesses have nerve or muscle diseases that affect the ability to swallow. Any of the following can alter the ability to swallow: stroke, brain tumors, head injuries, Parkinson’s, ALS, cancer of the mouth, throat, tongue or esophagus, and dementia such as Alzheimer’s disease. Your nurse can evaluate the patient’s ability to swallow foods and liquids and make suggestions to increase food intake if necessary. For example, some patients cannot swallow water or similar liquids but can swallow liquids thickened to a consistency of fruit nectars or pudding. Patients who are unable to swallow should never be forced to eat or drink.

Dehydration Hospice patients often become dehydrated with decreased intake of food and fluids or with excessive fluid loss. Common causes of poor intake are weakness and difficulty swallowing. Excessive fluid loss is common with diarrhea, vomiting, and fever. When the patient is unable or unwilling to consume adequate fluids, the symptoms of dehydration can be treated. The patient can be encouraged to suck on ice chips, popsicles, and juice bars when awake if there is no swallowing difficulty. Mouth care is important in a dehydrated patient to prevent dryness and infection of the mouth and lips. The lips can be moistened with lip balm; the mouth can be moistened with mouth rinses and cleaned by brushing and/or using mouth swabs.

As the patient approaches death, the lack of food and fluids is not associated with suffering. Research has shown that dying patients do not experience hunger and thirst since a normal part of the dying process allows the body to “shut down” gradually to avoid these symptoms. In fact, the forcing of food or fluids in a patient whose heart, lungs, and kidneys are shutting down may actually cause discomfort as the body systems become unable to handle the increased intake.

The positive effects of dehydration in those who are dying:

  • Decreased urine output, incontinence, and need for toileting
  • Decreased production of gastric fluids with less nausea and vomiting
  • Decreased production of secretions from the lungs
  • Less fluid retention or edema in the legs and abdomen
  • Changes in the body chemistry caused by dehydration produces a kind of “natural anesthesia” which is soothing for the patient

The negative effects of hydration therapy (IV’s) and artificial feeding:

  • Patient requires being stuck by invasive needles and tubes.
  • Caregivers are required to manage artificial feeding in the home setting.
  • Irritability and mental disturbances in the patient.
  • Digestive problems (with tube feedings).
  • Overload of fluids on the heart, lungs and kidneys leading to heart failure, swelling of the extremities and lung congestion.

Your patient’s nurse is always available to discuss the status of the patient and the appropriateness of artificial feedings and/or IV fluids.

Grief is a normal reaction to the loss of a loved one. When death occurs in the family, children, adolescents, and adults struggle to understand the loss and the often painful, overwhelming emotions that go with it. Individual reactions vary as well as the intensity and duration of grief.

With Solaris Healthcare, families are offered a 13 month bereavement program. Our program focus is educational and supportive. Assessment for families is done with follow-up and counseling as needed. Our counselors and chaplains will maintain contact through mailings, phone calls, and visits over time in order to support a healthy grieving process.

Do Children Grieve?
A better question is, “Do we let them grieve?” Many times, well meaning adults try to protect their children from the painful realities of life and death. We use expressions like, “Daddy went to sleep,” or “We lost your brother,” which can be frightening or confusing to a child. Gentle honesty is better.

This is a very hard time for a family, with many stresses. But as painful as the grieving process is, the family can be strengthened if all are allowed to share in it. Children can learn valuable lessons about compassion, love, support and emotional healing. They need to be reassured that they are still loved and are a part of the family.

Sometimes adults feel they should hide their feelings and “be strong.” However, when we share our feelings with children they are encouraged to share with us, and they can learn that feelings are not “bad” or “wrong.” Sometimes we are hurting so badly we have no comfort to offer anyone. That’s when other family members, friends, and professionals like our hospice staff can help.

Children can show their pain in many ways: bedwetting, temper tantrums, acting out, or doing poorly in school. They might seem more mad than sad. Sometimes children even feel guilty – they think they might have caused the illness or death. Remember that each child, just like each adult, may grieve differently, and that there is no one right way to take this journey.

Some of your child’s behaviors may make you angry, but it is important to remember that your child is doing the best he or she can. You will make it through this process.

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