As you take on the challenging role of caregiver for a loved one during their final days, many aspects of your own life will evolve. The nature of your relationship with the person you care for deeply will naturally shift as you begin making more decisions for them and growing into a position of authority.
You will likely be working – in many cases for the first time in your life – with a variety of medical, legal and financial advisors as you consider the best course of action for your loved one and make plans for all aspects of this difficult time. And along with your changing relationship comes your loved one’s physical condition, which can be difficult to witness as you help with more day-to-day needs.
All of this can naturally contribute to an emotional state that varies widely – and changes quickly. Your presence as a comforting and familiar face during this season of life is vitally important to your loved one. But it can carry with it a sense of pressure that needs to be released. Your feelings are a completely normal means of release, and understanding that truth is a healthy first step in dealing with them positively.
Here are some of the main emotional touch points that many caregivers experience and a few suggestions for how to better understand those emotions and move through them in a healthy way:
Heartache over a loved one’s condition is the primary emotion that inhabits many caregivers’ daily thoughts. There is also a natural sadness brought on by anticipating the time when they will no longer be with you.
Accepting your grief – and understanding that it is natural to grieve a loved one’s passing before it occurs – is easier said than done. But you don’t have to face this alone. Close family and friends can share your burden if you keep lines of communication open. Answer their questions honestly and give yourself time to share your own concerns and needs when trusted people call or visit. Consider sharing some of your feelings with the one you are caring for – often they can be a source of support for you, even as you are supporting them.
Your hospice care team is another good resource, and they will have recommendations for professional and spiritual counselors.
While concern for the future is natural, it can be easy to get trapped in a cycle of anxiety, wherein one dwells on problems and never seems to arrive at solutions.
Your hospice care team can be a great help when worry threatens to overwhelm you. Medical and counseling staff are always available for questions about diet, medication, physical needs, in-home equipment and other concerns. You might also want to schedule brief “problem-solving sessions” with friends and family, perhaps keeping a notebook for writing out plans and answers as problems arise.
As issues emerge about your loved one’s condition and living situation, there are many people with skills in a variety of areas who are willing to help you.
At some point during your time of caregiving, anger will arise. It may be a sense of resentment that a medication is not effective. It may be feelings directed at a family member who could be doing more to help. It might be frustration at the cost of some services or treatment. It may even be thoughts of anger toward the one you are caring for, a sense that you are taken for granted.
All of this is natural, normal and part of nearly every caregiver’s experience. Don’t let self-doubt overshadow these feelings and cause you to bury them without expressing yourself. Seek out a close, trusted friend, spiritual mentor or professional counselor and vent. Some of your anger may be justified, but even anger that is an overreaction should be expressed in order for it to be dealt with in a healthy way.
Often an overcrowded schedule – with too little time for your own needs – is a major culprit in building up frustration until it turns to anger. Work with your hospice team, friends and family to allow for extended periods of time for you. Taking breaks to relax, rest and recharge will actually result in better care for your loved one.
A sense of guilt during caregiving, and after the loss of one you've cared for, is normal, and often it is an unavoidable step in the process of coping and eventually healing. But regret doesn't have to overwhelm you. You may revisit important decisions or moments of conflict and wonder if you should have handled certain situations differently, or if you could have made better choices. And you may feel that it is wrong to be relieved if some your difficult tasks and stressful responsibilities are taken over by trained medical staff.
For some, these questions and emotions take on an unhealthy emphasis, and feelings of remorse and guilt threaten to define the entire caregiving and mourning process. While it is perfectly normal to experience some regret as a part of your experience, you don’t need to give in to a distorted view of yourself. As the one who is giving aid and comfort to your loved one in their last season of life, you can give yourself permission to serve – and grieve – without the shadow of guilt.
Talk about how you feel with close friends and family. Consider joining a support group (your hospice provider is a good place to start looking for one). You will find you are not alone in your struggle with guilt. These conversations will help you resolve your feelings -- and in turn you may help others in their own battles.
Remember, all of these emotions, and the many variations they can undergo, are a natural part of the caregiving experience. With the help of your hospice care team and the close friends and family members around you, you can work through these feelings in your own way and on your own timetable. And, ultimately, doing so will benefit both you and your loved one.
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