End of Life Care Giving

What It Means To Be a Caregiver at the End of Life

Coming to the end of life is as natural as living, and may be filled with mixed emotions, and times of reflection for both the dying person and care giver. There are losses for both the person who is dying and the person who is the care giver. Care givers often experience a variety of feelings, including:

• Loss, grieving the loss of the person who is sick, and feeling a sense of loss of your life before the illness. 
• Acceptance of what is happening, including your role as a care giver with new demands and duties. 
• Letting go of hopes for a long-term future with the person who is sick
• Finding purpose and meaning in the experience. Providing care for someone who is dying can be personally rewarding even in the midst of grieving losses and balancing the demands of care giving. 

If you have provided primary care to a loved one for a longer period of time, you are probably the person most equipped to determine what needs to be done now, and to fulfill his or her wishes. Trust in your ability to handle these additional responsibilities, but also realise that some things are out of your control.

If you have been placed into an end-of-life caregiving role by a crisis or event, try not to second-guess what you are feeling. Understand that conflicting emotions—fear, anger, grief, and helplessness—are natural, and have confidence in your own judgment (www.ms-society.ie locally may have access to counselling which may be of some assistance at a time like this

Having some knowledge about what lies ahead—physically, emotionally, and spiritually—can make a real difference as you and your family prepare for the death of your loved one. Talk to your loved one’s doctor, nurse, and other members of the health care team about what to expect. Discuss these issues with family members, friends, children, and visitors when appropriate.

This includes family, friends, professionals, volunteers—anyone and everyone who has something to offer. Take advantage of help wherever you can find it, and avoid the all-too-common tendency of Care Givers to become isolated.

Keep in mind, too, that most people want to help, but may be uncomfortable making the offer or with the circumstances. Make it easy for them. Let others know what they can do, in a concrete, practical way. Review Legal and Financial Arrangements.

This may include wills, powers of attorney (both financial and healthcare), “no code” or do-not-resuscitate orders, as well as the location and disposition of important documents and proofs of ownership. Having all of these measures in place and up-to-date will spare you and your family time and difficulty.

It’s easy to lose sight of your own needs and requirements during this time. Do what you can to maintain balance in your own life - physically, spiritually, and socially. If you feel selfish or guilty for spending time on yourself, keep in mind that no one can draw water from an empty well.

Hospice services have a high success rate in battling pain and helping terminal patients remain comfortable. Some families may have a difficult time with the idea of stopping efforts to combat a disease, but it’s important to consider all care options. There may be one hospice organisation or several in your community.  It is important to find out about the services that each hospice offers. If there are several hospices that serve your area, you may want to speak with some of them and/or ask your health care provider if they have recommendations for selecting a hospice. You may decide to request services from a particular hospice; be sure to communicate that request to your physician.

There are many steps that can and should be taken well in advance of a loved one’s final days. These include a letter of last instructions (in which your loved one sets down his or her wishes for the funeral or ceremony), as well as pre-planning with a funeral home. Many choices and details can be finalised beforehand, when everyone is thinking clearly. This offers the additional reassurance that matters are being carried out in accordance with your loved one’s wishes.

Whenever possible, involve the person who is sick or disabled in the planning. Even if it’s uncomfortable for you to discuss money, wills, sickness, and death, you will avoid problems later on and will help make sure you’re doing the right thing for both of you. Decision-making before a crisis arises is much easier than trying to make important decisions when everyone is stressed or when decisions need to be made immediately. 
Most professionals strongly recommend that all adults have a durable power of attorney—someone to make decisions in case the person becomes unable to do so. Encourage the person you care for to consider taking this step.

Have an open discussion with everyone involved. Acknowledge that while these are difficult topics to discuss, it is important to know what someone expects. Encourage the person who needs care to express his or her wishes about health care, living arrangements, finances and decision-making. 

Ask all family members what they expect or assume about the future. Start with the least controversial issues. If a topic becomes heated, try to find some point you all agree on. If you’re concerned that family conflicts could make planning difficult, chances are the conflicts would be worse during a crisis and decisions would be even more difficult.

Help the person make a list of his/her assets and update it regularly. Make copies and let a trusted person know where they are. Include the following:

  • Income 
  • Bank accounts 
  • Property 
  • Certificates of deposit 
  • Contents of safe deposit boxes 
  • Contracts 
  • Insurance policies

When Death Occurs