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Caring for a Dying Loved One

Although caring for a dying loved one is a natural part of life, there’s no handy manual. It can be difficult and stressful, especially when it comes on suddenly and you don’t know what comes next.

  • The end-of-life experience and what your loved one might need will be different for each person. For example: disability may come slowly or unexpectedly, and care may be needed for a short period or for an extended time.
  • Their mind may stay alert while their body weakens, their body may stay strong while their mind fades, or both.
  • There may or may not be a lot of pain or other troubling symptoms.
  • You may have enough family and friends to help out or you may need to seek aid from other sources.

Care may involve intimate or physically demanding hands-on-care, unfamiliar medical treatments, while dealing with complex emotions or spiritual issues. It may also involve necessary changes in your loved ones’ lives and environment, sometimes against their wishes.

All of this is happening while experiencing your own anticipatory grief. However, successfully managing the demands of caregiving can be personally rewarding as you find purpose and meaning in the experience.

It will be important to start with a frank discussion of what this care will involve, how it may change over time, and the need to compromise. This may help both of you cope with the difficult times to come without significant frustration, anger, and arguing.

Physical Comfort

Much of your role as caretaker will be to provide comfort in the form of hands-on physical care, including bathing, help with eating, dressing, grooming, toileting, and other personal care.

Physical discomfort and significant pain are common for those near death. Since comfort is the primary goal for those facing the end of their life, you may be giving your loved one medications and other medical treatments for this pain and discomfort.

  • Your loved one may not always tell you or their health care provider about pain or other discomfort.It may be very important to ask if they are comfortable or experiencing physical pain.
    • If they are experiencing pain, have them describe the character of the pain and other associated symptoms and rate them on a scale of 0-10.
    • Request and give appropriate pain control medications or changes in current pain control if not effective.
    • Pain medication may not totally eliminate the pain and could have side effects that may limit the amount of pain medicine that is given.
  • Look for breathing problems, confusion, muscle spasm, or other symptoms that may be relieved by treatment.
  • Keep in touch with hospice, the patient’s healthcare provider, and other care providers and let them know about all of the symptoms and your recorded observations.
  • Ask them any specific questions you may have written down and record any information and instructions you receive for later reference.

During the last days and hours before their death, there are many common types of discomfort that may arise. Here are some to expect and ways you can provide relief.

  • They may stop eating or be unable to eat or drink and need you to give sips of liquids, small spoonfuls of food, ice chips, or a damp sponge to keep their mouth moist.
  • Dryness of the lips, eyes, and around the face can be relieved by a damp cloth to relieve dryness around the eyes, lip balm or petroleum jelly to the lips, and moisturizing eye drops.
  • Being in bed for long periods of time can result in skin irritation or bed sores, which can be avoided by moisturizing lotion to treat dry skin, pillows, massage, and periodically adjusting their position in bed.
  • Incontinence of urine and stool may occur. Consider using incontinence pads or adult diapers.
  • Sensitivity to temperature is common. Try and anticipate what they need and adjust the room temperature and bedding as needed. If they have a fever and can still swallow pills or liquid medication, consider giving them acetaminophen.
  • Agitation, restlessness, and confusion may happen as their brain becomes affected.
    • Speak in a calm and reassuring voice and gentle reminders of where they are and who is there can help.
    • Holding hands or a gentle touch can ground and soothe them.
    • If significant agitation is a problem, ask the medical team for help.
  • Labored breathing can cause discomfort toward the end. A cool-mist humidifier, gently turning their head, adjusting pillows, or raising the head of the bed may help.

Emotional Comfort

In addition to physical discomfort and pain, your loved one may experience emotional pain from a range of feelings. They may be experiencing grief over their approaching death and the many things they have lost, such as physical independence, contact with friends and close relatives, control over their own life and body, and/or their mental capacity. Emotional Support During the End of Life goes into detail about the stages of grief and other possibly overwhelming emotions during this time.

The most important things are to communicate openly, be realistic, try to treat them as normally as possible, and be patient with each other and other family members.

  • You should encourage your loved one to talk about their feelings and fears, even if it includes resentment about the control you have over their life and not expressing appreciation for your sacrifice.
    • Acknowledge their right to feel the way they do, but for the most part just listen.
    • Assure them that you understand what they are going through and will support them.
    • You can share your feelings with them, but take care not to add to their burden.
  • As things progress, continue to discuss what is happening including their care, their condition, and other issues. No topic should be off limits, even if it’s just talking about their favorite sports team or movie.  
  • Offer to contact and arrange visits for a friend or clergy to provide additional support.
  • Request that others check on them through regular visits, phone calls, texts, or other forms of social media.

Seek professional help from your loved one’s healthcare professional, hospice, counselors, social workers, and other resources to assist them in dealing with emotional and physical issues.

It is important for the whole family to have some emotional involvement with the end of your loved one’s life. They should also interact well with each other and avoid any outward turmoil that would make it harder on your dying loved one or prevent emotional healing after their death.

Caring for Yourself

Caregiving for a dying loved one can be a physically exhausting and emotionally draining experience, especially if it requires you to move into their home to do so. However, you must also take care of yourself and seek help in order to manage the stress of being a caregiver. Unfortunately less than 5% of caregivers take any time for themselves.

Attempt to cope with your feelings of loss, resentment of your role, anxiety, depression, loneliness,  anger, fear, frustration and other intense emotions by devoting at least 15% of your time taking care of yourself and seeking help.

  • You can look for emotional support from friends and family, although many of them will be having similar feelings. It may help to avoid those around you who are not supportive.
  • Seek out reputable websites, webinars, articles, books, etc. about caring for a dying loved one.
  • Ask hospice or other professionals or search Listservs for literature that has advice and support for you.
  • Join a support group for caregivers; some may be specific to your loved one’s illness.
  • Consider seeking professional help from healthcare professionals, clergy, and/or counselors.

Don’t be reluctant to ask for help in caring for your loved one.

  • Ask friends and family for help with caretaking and/or day-to-day chores.
  • In addition to hospice, you can look for other community resources that can help with all aspects of their care. Their primary care provider will be able to make referrals if necessary.

It is just as important to take time to maintain your own health and wellbeing by making it a priority and not an afterthought for when you can find the time.

  • Take a break from caregiving, even if it is brief or you have to say no to do so.
  • Take care of your own health by exercising, eating healthy, and getting enough sleep. 
  • Simplify your life as much as you can by cutting back on work, volunteering, and other obligations.
  • You may find that reading or writing helps. Keep a journal, diary, or online presence at a website like CaringBridge.
  • Other measures may include spending time with activities you enjoy such as listening to music, going out, spending time with pets, and meditation.

Making Your Task Easier

Aside from taking care of yourself, there are things that you can do to make your life easier. The most important are acquiring what you need, getting help — including financial assistance, and arming yourself with knowledge. No detail is too small to plan for.

  • Professional agencies such as hospice exist to help people in your situation. Take full advantage of the range of services they offer.
  • Learning about your loved one’s diagnosis can prepare you for what to expect or look out for and make you a more effective caretaker. You can also learn about how to care for them, including taking an on-line course. The Resources section below has links to where you can find this information.
  • It may be necessary to prepare your loved one’s home, even against their objections.
    • There may be adaptations that will ensure the home is safe, comfortable, and easy to get around in.
    • You may need to modify their home, such as adding handrails or building ramps.
    • See How to Make & Pay for Home Modifications to Enable Aging in Place for details about possible renovations and how to get financial aid for them.
  • Consider and arrange for any special equipment that may be needed such as a hospital bed, walker, commode, call buttons, shower seat, and/or oxygen tanks. Hospice or their healthcare provider should be able to help you figure out what you may need and how to get it.
  • Arrange for the family to contribute with help. Keep a list of specific things that you need to get done. You may want to keep a running list or online registry of these tasks.
    • When others ask about how they can help, you can assign them items on the list.
    • Even if someone does not offer help, it’s okay to ask for assistance for tasks from the list.
    • Some of the things you should be looking for help with include:
      • Everyday house chores, such as picking up the mail or newspaper, house cleaning, doing laundry, cooking, dishwashing, watering plants, yard work, and/or feeding any pets;
      • Errands, such as picking up groceries or medications, and other shopping;
      • Transportation to doctor’s appointments, treatments, and other out-patient care;
      • Respite care to get you out of the house or night care so you can sleep;
      • Getting someone to make meals for you and your loved one; and/or
      • Paying bills or other financial management.
  • It may be necessary to hire people from professional agencies for some things your family do or does not know how to do.
    • Hospice or your healthcare provider should be able to help arrange this.
    • The Resources section has links to organizations that provide these services.
  • Too many phone calls or texts can overwhelm you, even those contacting you with the best of intentions. There are many ways to reduce the need to be constantly giving news to family and friends.
    • You may want to assign another family member to be your point of contact for other family and friends.
    • Post what is happening on Facebook or create a website to get the word out. Organizations such as Caring Bridge and My Life Line (specific to cancer) can help you set up your site.
    • You may want to appoint a different spokesman to speak to anyone that is not close family or friends.

Respecting Their Wishes

There may come a time when your loved one is no longer able to make their own decisions and you must take on the role of making decisions in their best interest. This may include decisions regarding end-of-life care. It is highly recommended that you all discuss these wishes ahead of time.

  • The most important discussions are those concerning potential life-prolonging treatments.
  • You should talk about their preferences for quality of life vs quantity of life and Aging In Place (dying at home) vs an inpatient setting.
  • Knowing these preferences ahead of time can give you and your loved one peace of mind if/when the time comes.

Once you are aware of these preferences, the best thing you can do for yourself and your loved one is to honor their decisions.

  • Since it is always difficult to let go, it can be tempting to request life-sustaining care when the decision is yours even if your loved one wouldn’t have wanted it.
  • In most cases this results in unnecessary care that is unlikely to work or be in the best interests of your loved one.

If you are aware of your loved one’s wishes, it is best that they be recorded somewhere and you have officially been appointed to carry them out.

  • Advance Directives are legal documents that are the ideal way to do this.
  • A living will/advance care plan specifies your loved one’s specific requests about end-of-life care and life-sustaining care.
  • The Health Proxy or Healthcare Power of Attorney gives you the legal responsibility to act on your loved one’s behalf when they cannot. It specifies exactly what actions you can or cannot take and which decisions are yours to make.
  • You should always know where their advance directives are kept and probably have your own copies.

As you share the end-of-life process with your loved one, you will interact with healthcare providers and specialists helping you through the process.

  • They will be the ones to carry out your loved one’s medical care and they will need to look to you if your loved one cannot consent on their own. 
  • Having your loved one’s requests provides you with a guide in the event that you are asked to make a difficult decision. It is important to know your loved one’s wishes about life-sustaining treatments.
    • You should consider any situation when they should either be stopped or are not started. 
    • Such treatment may include certain medications, feeding tubes, IVs, ventilator, CPR, resuscitation, dialysis, and more.
  • Without them, you are left in the onerous position of having to either have to do what you think they would have wanted or do what you would prefer.

Your loved one’s healthcare providers may need to depend on you to provide them with accurate, complete information to be able to make good assessments and provide the best possible care for your loved one. You can help by knowing all of their major medical problems, surgical and other treatment history, doctors’ names, medications, and drug allergies.

A more detailed discussion of these subjects can be found in the Advance Care and Easing Your Passage sections.

Resources

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