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.
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.
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.
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.
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.
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.
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.
Don’t be reluctant to ask for help in caring for your loved one.
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.
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.
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.
Once you are aware of these preferences, the best thing you can do for yourself and your loved one is to honor their decisions.
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.
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.
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.