Caregivers are those who provide support to people who need help. Caregivers may live with such persons or visit them regularly, weekly, or even daily to provide assistance. The basis of caregiving is investing energy, time, and support in another person’s well being.
Being an End-of-Life Caregiver
Mixed emotions can accompany the process of dying, though it is an inevitable part of a person’s life. Times of reflection and loss may be felt by both the caregiver and the person being cared for. Caregivers offering support in this process may confront feelings of:
Loss – The caregiver may feel a sense of loss of their own life and may grieve over the loss of the person who is ill.
Lack of Acceptance – As a caregiver it may be difficult to come to terms with the process that is occurring and their role in it, along with the responsibilities that accompany that role.
Needing to Let Go – The caregiver may need to relinquish ideas of long-term plans with the person who is ill, as well as the life they shared with them before the illness developed.
Needing to Find Purpose – The caregiver may be able to find new meaning and purpose in this experience. It’s possible that the experience can be personally rewarding for the caregiver, even when one person suffering a life-limiting illness and the other is feeling or grieving their loss.
Provision of Care
Caregivers are often tasked with contributing to every aspect of care for a loved one’s comfort. It is important to understand that the needs of those nearing the end of their life can be complex, so it’s important to attempt to anticipate these needs and make an effort to accommodate them.
Make sure that the person you are caring for is comfortable in all ways. Ask them if they have any pain, breathing issues, confusion or symptoms of any other conditions so that you can help them find comfort. Talk to their doctor and any other service provider so that you can get medication and/or any other relief aids, or counseling as needed.
Tips for Care
Comfort Assessment – Ask your loved one about their physical and emotional comfort level and ability to rest and relax.
Pain Assessment – Ask your loved one if they are experiencing any pain or discomfort, and if they are, ask them to rate the pain on a scale of zero to 10.
Record Statements – Write down what your loved one says and review it before calling a health service provider or doctor.
Write Down Questions – If you have questions for health service providers or doctors, write those down, as well.
Write Down Answers – Any answers you receive should be recorded so you can refer to them later.
Providing Spiritual and Emotional Comfort
Besides physical pain or discomfort, emotional and spiritual pain may be something your loved one is feeling. Understand that they are also feeling a sense of loss — the loss of control of their own life, health, or independence. It’s important for you to explain to them what is happening with their condition, their care, and their surroundings as this is happening.
Tips for Emotional Care
Listen to Your Loved One – Don’t try to talk them out of what they are feeling. Instead, listen to their concerns, their frustrations and their feelings. Remind them that their feelings are valid.
Be patient – Be patient with your loved one and with yourself. Give them the time to say what they need to say.
Be Proactive – If they’re not opening up about the way they’re feeling, it can make things worse. Talk to them and encourage them to share their feelings.
Allow Them to Speak to Third Parties – Bear in mind that you are not the only person helping them get through this time. If they need your assistance to contact other people, such as friends, religious leaders or counselors, offer it without hesitation.
Ask for Assistance – Remember that the work you are doing is taxing. Occasionally you may need time for yourself; ask for help so that you can receive this time.
Meals can be pleasant times when you and your loved one can chat and be together. Even if your loved one lacks mobility, you can still bring a tray in and sit beside them while you both eat. If your loved one has trouble eating, there are many tools and utensils that will make this process easier for them. Use plastic tablecloths, placemats, and towels to limit potential messes and ease clean up afterward. It may be necessary to wear an apron and/or other covering for your clothes, especially if you anticipate spills. Use cups with handles and easy-grip plastic glasses that are lightweight. To prevent spillage, try using drink holders with lids and inserts for plastic straws. Flowers in a vase on a table or next to their bed are an easy way to bring joy and light to you and your loved one’s daily routine. Open any curtains or shades to let the sun shine in.
Travel and Entertainment
Entertainment can enhance the quality of your loved one’s life during this time. Choose favorite programs from the television listings that you can watch together, as opposed to leaving the television on as background noise. Large print books with easy-to-read type or audiobooks from the local library are one option for a quality shared activity with your loved one.
Visit art or hobby stores to see if there are crafts or projects you could work on together. Take day trips to local museums, galleries, zoos, and botanical parks or other places of interest. If your loved one maintains some mobility free events going on at local colleges, religious centers or community organizations can offer hours of inexpensive enjoyment.
When possible check for wheelchair access ahead of time if applicable. Don’t let a lack of mobility stand in the way of their entertainment. Invite family members to join you, particularly if you need an extra person to drive or help.
Invite friends and/or family members to meals with your loved one at restaurants. If your funds are limited, inviting friends and family over for snacks or dessert may be a better option. It is perfectly ok to ask everyone to chip in and help pay instead of offering to pay for everyone.
When appropriate, invite additional family members or friends to come stay with you and your loved one for additional company. Some communities have Agencies on Aging that may offer volunteer, visitor, and telephone reassurance programs. Social, religious, and fraternal organizations offer activities for older people specifically. These organizations can be ways to extend your network and support circle.
If it’s appropriate, a pet is a great way to offer companionship for your loved one. You can find many pets in need of adoption at your local shelter.
Computers can be an escape that let your loved one speak with friends, relatives, and other caregivers. They can also learn, play games and talk in chat rooms with peers.