When Linda brought Sam home under hospice care she beamed as he smiled at familiar surroundings. When he smiled, she smiled. But smiling became harder. Life was changing and the biggest change was taking place right before her - her husband Sam's decline. In weeks following, tears hit her unexpectedly and as new emotions sapped her strength, she felt she was losing hold. Linda was experiencing anticipatory grief.
For caregivers, anticipatory grief - the sense of loss before the death - starts from the onset of care and progresses until the one cared for dies. Suzanne Mintz, president and co-founder of National Family Caregivers Association, who has an MS-afflicted husband and a father who died from Alzheimer's, states, "As a family caregiver, you are grieving throughout the entire process, not only with the death of your loved one, you grieve with each loss -- each time they go down a notch, with each reminder of what was and what it has become."
Linda knew her husband as strong and agile, but now he struggles to grab a cup of water. Even the sight of medical supplies hits her with the reality that Sam would soon be gone. Now she has two jobs, caring for Sam - and herself.
Anticipatory grief leaves you weak, confused, anxious, numb, and tired. Anger lies close and so does depression. You feel terribly alone because talking to your loved one would only make him feel worse. You feel fear, isolation, sadness and other unexpected emotions. Caregiving not only triggers anticipatory grief, it can trigger pain from past losses.
Caring for someone can stir up memories of a parent, sibling, or friend who died years ago. If you find memories jumping up, review past grieving experiences and ask yourself if you fully grieved. If you uncover unfinished business, find a way to express your emotions with a friend, group, or write in a journal. The key is to get the emotions out. Let's look at some tips for caregivers tending a loved one.
For caregivers self-care is a must. Divide your world into two jobs, caring for your loved one and caring for you. Set some boundaries and do the basics. Proper sleep, food, and exercise helps your body cope with the emotional stress. It is easy to go full throttle, but that only hurts each involved. If you are a caregiver, give yourself permission to take care of you.
Linda felt guilty taking a walk or window shopping while Sam lay in bed. Guilt affects thinking and allows for wrong decisions. One way to alleviate guilt is to get a professional volunteer or family member to help you. Having help gives you permission to take a timeout.
Guilt can also hit when you experience unexpected emotions like getting angry because your loved one does not communicate clearly, refuses your help, or constantly calls. When Linda found herself thinking she wanted it to be over, she was shocked. These feelings are normal and can be dissolved by talking them out.
A trusted friend can help you vent and get perspective on your new life as a caregiver. Sharing feelings with someone who will not try to fix or judge, but just listen, is invaluable. A regular time out each week with a friend can help. If your loved one is on hospice care, the chaplain or social worker can also help you sort out emotions and gain perspective.
Another tool is to find a small group. Whether church or civic, a small group can provide the support you need and help you find other friends who have undergone a similar experience. And you can grade your network of friends: friends for light talk, friends for doing things with, or friends for deep exploration of feelings. Every person reacts differently so knowing who is available for each of your needs saves time and stress. And, it is okay to make this determination.
Give chores away. Find a family member or friend and ask them to help. Most people offer, "Let me know if I can do anything." They want to help but don't know how; you want their help but don't want to ask. Ask. They will be happy and you will be relieved. A job as simple as straightening magazines or sorting the mail can do wonders for you and your friend.
Buy yourself that new blouse, take a day off, go for a walk, or invite a friend to lunch. Rewarding yourself will boost self-esteem, refresh your mind, and reboot emotions. Also, identify your physical, spiritual, and emotional needs and make sure each is being addressed. Pray or listen to music.
Anticipatory grief is real and it is hard. Crying is allowed and so are the feelings that swamp you. You are doing a unique job and can take confidence that you are important. The emotion, stress, and fatigue are normal; but take courage, you are impacting the life of someone you love and are making a difference in this life and the next.
Jim Johnston has been a pastor in the Pasadena area for over 30 years. He is a chaplain for Sanctuary Hospice in Glendale, CA. helping hospice patients and their families cope with end of life issues. He also holds bereavement sessions for those who have lost loved ones. He and his wife Laura are pre-marriage and relationship coaches helping couples strengthen their marriages. He is the father of four and has been married to Laura for 27 years. Web: sanctuaryhospiceca.com Coachourmarriage.com. Contact: 626-676-3651.
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