Planning the future for your loved ones

Caring for a Dying Loved One

Caring for a dying loved one is a natural part of life that many of us will experience. While being in the presence of someone close to death can be difficult and stressful, caring for them is even more so.

The end -of -life experience and what your loved one might need will be different for each person, but a lot of it will be related to the circumstances.

  • Death may come unexpectedly where there is little need to care for your loved one for an extended time.
  • Their mind may stay alert while their body weakens, their body may stay strong while their mind fades, or a combination of 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 need to seek aid from other sources.

It may involve physical care, some of which could be quite intimate and/or intense, medical treatments you are not familiar with, dealing with complex emotions, and possibly spiritual issues. 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.

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.

As we saw in Palliative Care and Hospice Services, 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 also be giving your loved one medications and other medical treatments for this pain and discomfort.

Even though the pain medication and other medical treatments may make them more comfortable, they may not always express discomfort to you or their healthcare providers.

  • It may be very important to ask them if they are comfortable or experiencing physical pain.
    • If they are experiencing pain, have them describe the pain and rate it on a scale of 0-10.
    • They should also describe the character and severity of any other symptoms.
    • If pain is significant enough, request appropriate pain control medications or changes in current pain control.
    • Pain medication may not totally eliminate the pain and could have side effects may limit the amount of pain medicine that is given. This may also require changes or other comfort measures.
  • 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.
  • Let them know about all of the symptoms and your observations you have recorded.
  • Ask any specific questions you may have written down.
  • Also write down 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 for their discomfort

  • They may stop eating or be unable to eat or drink.
    • Try and give them sips of liquids or have them use a straw. 
    • Giving them small spoonfuls of food can encourage them or allow them to eat.
    • Even if they are not taking anything orally, use ice chips or a damp sponge to keep their mouth moist.
  • Dryness of the lips, eyes, and around the face
    • Use a damp cloth to relieve dryness around the eyes.
    • Apply lip balm or petroleum jelly to the lips.
    • Consider moisturizing eye drops.
  • Being in bed for long periods of time usually results in skin irritation or bed sores.
    • Moisturizing lotion can be used to treat dry skin.
    • Move and adjust their position in bed to avoid the development of sores.
    • If sores develop, contact the patient’s care team for help.
  • Incontinence of urine and stool may occur.
    • Consider using incontinence pads or adult diapers.
    • Ask about a urinary catheter; note: the infection rate is high and may be too risky.
  • Sensitivity to temperature is common.
    • They may have trouble regulating their body temperature and could be feeling hot or cold.
    • Try and anticipate what they need and adjust the room temperature and bedding as needed.
  • Agitation and confusion    will happen as their brain becomes affected.
    • Speak in a calm and reassuring voice.
    • Holding hands or a gentle touch can ground and soothe them.
    • Gentle reminders of where they are and who is there can help. 
    • If significant agitation is a problem, ask the medical team for help.
  • Labored breathing can cause discomfort toward the end.
    • Gently turning their head, adjusting pillows, or raising the head of the bed may help. 
    • Try a cool-mist humidifier.
    • Ask the medical team about medication or the use of oxygen.

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 thing is to communicate openly and be patient with each other and other family members.

  • You should talk to your loved one about their feelings, acknowledge their right to feel that way, but for the most part just listen. 
    • Don’t try to take any of these feelings away; they are part of the coping process.
    • Avoiding giving false hope. 
  • 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. You should encourage your loved one to discuss their accomplishments, failures, fears, regrets, concerns or distress with life or someone else, or any other difficult topic.
  • Offer to contact a friend, counselor, or clergy to provide additional support.
  • Help arrange visits for friends and other family.
  • 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, counsellors, social workers, clergy, and other resources to assist them in dealing with emotional and spiritual 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. You must also take care of yourself and seek help in order to manage the stress of being a caregiver.

It is important to remember that you will be experiencing loss as well. You and other family caregivers will have a similar mingling of emotions and feelings to your loved one, in some cases for different reasons. You must manage these feelings in order to continue to support your loved one.

  • You will be grieving the loss of the person you knew, any hopes for a long-term future with them, and their eventual death.
  • Although you may come to accept what is happening, as your caretaking role increases you may grieve the loss of your life before the illness and resent having to do so.
  • Among the other intense emotions you may have are anxiety, depression, loneliness, guilt,  anger, fear, frustration, confusion, loss, and feeling like you can’t go on.

It is also important that you seek help to manage all those things you need to do as a caregiver.

  • Seek professional help from your healthcare professional, hospice, clergy, and other resources to assist you in dealing with emotional and spiritual issues.
  • In addition to hospice, you can also look for other community resources that can help with all aspects of care.
  • Look for support groups for caregivers; some may even be specific to your loved one’s illness.
  • Don’t hesitate to ask others to help you with day-to-day chores.

Just as important is to take time to maintain your own health and wellbeing by making it a priority and not an afterthought 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.
    • It gives you the needed opportunity to have time for yourself, to be with and talk to friends, do something you enjoy, or just rest.
    • It also allows others to be able to spend one-on-one time with your loved one.
    • Don’t be afraid to ask if nobody offers; some organizations may be able to provide respite care.
  • Take care of your own health by exercising, eating healthy, getting enough sleep, and going to your healthcare provider or a counsellor if needed.
    • Keep healthy snacks around so you have good food to eat, even if you can’t find the time.
    • Take the opportunity to be active or exercise whenever you can. Dress in clothes suitable for this so you can take the opportunities whenever they come up.
    • Indulge yourself when you can. 
  • 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.
    • Look for articles or books about caring for a dying loved one.
    • Subscribe to caregiving newsletters, some may be found at disease-specific websites.
    • Ask hospice or other professionals or search Listservs for literature that has advice and support for you.
    • Read the Bible, Torah, Koran, or other religious text for spiritual help.
  • Join a support group.
  • Other measures may include listening to music, trying to laugh, 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, and arming yourself with knowledge. No detail is too small to plan for. You might be surprised how many of them there might be.

  • 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 has links to where you can find this information.
  • It may be necessary to prepare your loved one’s home.
    • 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 In-Home Care with Support Services for details about possible renovations.
  • Consider and arrange for any special equipment that may be needed such as a hospital bed, walker, commode, call buttons, seat for the shower, and/or oxygen tanks. Hospice or your healthcare provider should be able to help you figure out what you may need and how to get it..
  • Arrange for 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 OK 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 and dishwashing, watering plants, yard work, 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 also include decisions regarding end-of-life care. It comes highly advised to discuss wishes ahead of time.

  • The most important discussions are those concerning potential life-prolonging treatments.
  • You should also 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 those 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.

Even 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 will specify 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 also 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 tube, IVs, ventilator, CPR, resuscitation, dialysis, and more.
  • Without them, you are left in the onerous position of having to either having to do what you think they would have wanted or do what you would prefer.

Your loved one’s healthcare providers may also 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.


Resources

General References