suggestions and tips
Caring for a loved one in hospice can be an emotionally and physically demanding experience. It also is an important one. Bon Secours Hospice has more than 30 years of experience helping and advising caregivers, and we understand the challenges you face. We offer the following suggestions to assist you as you fill an important role in your loved one’s life:
In your role as a caregiver, you’ll deal with many new and complex matters. Be sure to ask for a full explanation of anything you do not understand, whether it concerns medicine, personal finances, insurance, legal matters or something else. The more you know, the more control you can exercise over your situation, and the better able you become to make decisions. Asking questions is not a sign of weakness or ignorance. In fact, it shows wisdom, courage and a commitment to doing the best job possible!
Also making notes and lists can help relieve stress. Doing so will help you handle many tasks, including giving medications properly, following doctors’ instructions, and having contact information handy for physicians, nurses and other health care professionals.
Include the Patient
Patients who are left out of discussions about end-of-life care can feel added stress and loss of control, making care discussions difficult and highly emotional. Engaging your loved one allows for compassionate candor and open communications. The result can improve the patient’s quality of life and their relationship with you and your family during this period.
Caregiving is demanding, but you don’t have to do it alone. Enlist friends and family. Remember that the Bon Secours Hospice team can advise you on handling day-to-day matters, as well as medical ones. Our volunteers can lend a helping hand and a sympathetic ear. Certified nursing assistants can assist with bathing and grooming patients and changing bed linens. Plus, consider using respite care. This service can provide you with a break that will allow you to rest and return to your caregiver role with renewed energy.
Take Care of Yourself
Too often, caregivers become so focused on the patient’s needs that they neglect their own. This can lead to exhaustion, illness, and poor thinking and decision-making. It is vital that you set aside time for yourself to enjoy meals, exercise, recreational activities, etc. By staying healthy and well-rested, you are better able to take care of your loved one.
Encourage the Patient to Update Important Legal and Medical Documents
Updating legal documents gives the patient another way to exert control in an important area by ensuring that their wishes are observed. Several documents are particularly important: a Will, Advance Care Directive (also known as a Living Will), Medical/Health Care Power of Attorney, and a Durable Power of Attorney. A Will addresses how a person’s property is handled after death. A Living Will/Advance Care Directive specifies what care a patient does or does not want to sustain his/her life. A Medical/Health Care Power of Attorney and a Durable Power of Attorney name the person(s) who will make health care and financial decisions, respectively, for the patient if he/she cannot. An attorney should be consulted to discuss the best options for your loved one.
Caregivers also will find excellent advice on managing many aspects of end-of-life care at these sites:
- The National Hospice and Palliative Care Organization offers good practical guidance.
- The National Cancer Institute, a part of the National Institutes of Health, has excellent information about “Caring for the Caregiver.”
other caregiver tips
Tips for family members and caregivers:
The final stages of life are a physically and emotionally stressful time not only for the patient but for the caregivers and families as well. You will likely see changes that can be extremely difficult to witness. As the dying process progresses, there are many things that can be done to support your loved one. In order to help you understand and cope with these end-of-life issues, below are common situations you might experience and ways to best support your loved one during the final stages of life.
Disengagement and Resignation
Toward the end of the journey, your loved one may disengage from the outside world. The level of responsiveness will vary from active conversation to no conversation at all. Take advantage of those precious times when your loved one is aware of their surroundings, and share the quiet and serenity when they do not appear aware. Ways to comfort your loved one may take the form of touching and holding hands, soft conversations like saying, “I love you,” and supporting their desire to “let go,” if ready.
Eating and Appetite
Our lives normally depend on nourishment to get well, but at the end of life appetite may vanish. As difficult as it may be to withhold food or drink, that may be the most appropriate course. Nourishment at the end of life will not alter the dying process but may cause a patient to choke or aspirate. Consult with our Hospice staff for guidance in terms of proper nourishment and fluids.
It is not uncommon for your loved one to be confused or even hallucinate. Be supportive with quiet reassurance. If concerned, consult our Hospice staff.
It is also quite common to notice labored breathing. It may take several forms from very slow, shallow breathing to short rapid breaths. The breathing sounds may be dry or wet. A common finding at the end of life is called Cheyne-Stokes breathing which may alternate deep breaths with long periods of no breathing at all. These varied types of breathing are normal as the dying process progresses.
Bladder and Bowel Issues
It is not unusual for patients at the end of life to be incontinent of bowel and urine function, or the opposite can occur with constipation. Consult our Hospice staff if you notice either of those situations, and we will initiate appropriate treatment.
Color and Temperature Changes in the Skin
It is not unusual to see various color changes to the skin caused by alterations in circulation. At times a patient’s skin may be very cold and at other times feel extremely warm. Consult with our Hospice staff in terms of recommended support.
Toward the end of life, some patients may experience pain, nausea, agitation or other symptoms. Let our Hospice staff know if you notice any of these symptoms so appropriate treatment can be given to offer relief.
Saying Your Goodbyes
You often hear from families that the last weeks, days and hours of a loved one’s life were the most precious because there was an opportunity to say, “I love you,” or “thank you” or to settle unresolved issues. Soft conversation, music, praying or just holding hands can offer the love and reassurance for both patient and family.
Don’t Be Afraid to Ask for Help or Support
If you have a question or concern about your loved one or need support for yourself, don’t hesitate to lean on our skilled Hospice staff. We are here for you as much as we are for your loved one.
“You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.”
— Dame Cicely Saunders, nurse, physician and writer, and founder of hospice movement (1918–2005).