Anticipatory GriefHow to Handle All These EmotionsAnticipatory Grief sounds like such a formal way to say, “My Mom isn’t who she used to be today, she will be someone different next week, and she will never be how she was when I was growing up. That makes me very sad!” When a loved one has dementia they change. They lose the ability to communicate. They lose their personality. They lose the ability to express physical intimacy. They lose the memories of who they were and they forget who you are. The caregiver loses the person they loved. The caregiver loses the relationship, the two-sided give and take that made you parent and child or husband and wife. The caretaker may also lose the companionship and reassurance of having a partner and, sadly, may lose friendships with others, too. In addition to these emotional losses there may also be the loss of income, the loss of privacy, the loss of space, and the loss of time. All these losses occur long before the dementia patient actually dies. They occur at a time when the caregiver is facing long, tiring days. At a time when the caregiver must meet their own mental, physical, emotional, financial, and spiritual needs and also those needs of the care recipient. The work is exhausting. And just about the time you adjust to Mom having forgotten the word for “fork,” she forgets how to use a fork. And you must adjust again. Anticipatory grief is the act of mourning when a loved one is expected to die. It is also mourning the loss of so much of the relationship that you used to have. My Own Journey through Anticipatory GriefAnticipatory grief began for me (Paula) at our Mother’s 68th birthday party. We met some friends at my Mom’s favorite restaurant, “The Buffet.” First, she didn’t recognize our friends though she had known them for years, vacationed with them several times, and had seen them recently at church.Then, she didn’t understand the concept of birthday presents. We set the gift in front of her and she just looked at it. Even after we told her to “open your presents” she didn’t know what to do. Finally, with a lot of help from her granddaughter, Anna, she got all the gifts opened, but she didn’t respond with, “Thank you” instead she handed my daughter the stuffed duck that Anna had just given to her and said, “This is for you.” We all just looked around at each other with that half smile/half frown expression on our faces and chuckled, and changed the subject, and started cleaning up the wrapping paper. It was awkward, yes, but mostly it was sad. It was when I realized that Mom would never again celebrate a holiday with us. She lived just over year from that day, but that day was when I realized we had lost her. She was still alive, but the “Mom” that I knew was gone. The Emotions of Anticipatory GriefHere is a list of emotions you may feel while dealing with anticipatory grief.Anticipatory Grief is unpredictable. You may feel all of these emotions or just a few. You may feel other emotions not listed here. You may feel several of these emotions at once and then go for a period of time without feeling any of them.
(For further information on each of these emotions please click the links on this page or on the Caregiver Emotions page.) While the grief you experience following the death of a loved is a normal emotional response to the loss, anticipatory grief is more of a state of mind—an anxiety that can cause you to become preoccupied with the impending death. It can become debilitating at times. But a caregiver of a dementia patient has to “pull themselves together.” Dealing with the Anticipated Loss of Your Loved OneIt is easy for a caregiver to get so busy dealing with everyday activities that they have no room for sadness. When there are meals to prepare, bills to pay, errands to run, medication to dispense, and so many other activities that must be done there is no time left to remember what used to be.It is possible for all of this grief to build up inside and then at the worst possible moment the dam breaks and you aren’t able to hold back the sadness. This is not the best way to deal with anticipatory grief. When caring for a loved one you have to keep going, but it is also important to take care of yourself. Be sure that you find time meet your own needs. Something as simple as a daily shower and the time to read a chapter of a book or work on a hobby for a few minutes can provide some of the time that you need to reflect and to work through the emotions you are feeling. Find a support group, either an organized group of caregivers or just an understanding group of friends and/or relatives that you can talk to. There are also several online communities where the members of the group share their thoughts via an online forum. Make sure you feel comfortable enough around this group of people to share your fears, anger, sadness, guilt, disappointment and so many other emotions. Having the opportunity to talk and to receive encouragement from others who have been there or who love you can make dealing with the grief easier. Journaling is another way to help you work through the sadness. Even if you don’t consider yourself to be a writer you can still record your feelings. Try making a list of the occasion, the date, and how you felt about it. Having this record may show you a pattern of what makes you sad and help you to deal with future bouts of overwhelming emotions. Another possible form of therapy can be keeping a blog (a web log), an online journal that is focused on the topic of the challenges and emotions you face as a caregiver for a dementia patient. Somehow, knowing that someone else who needed help and encouragement might stumble across my words on the Internet made me feel better as I kept my blog. If you find that you cannot function because of the sadness, seek professional counseling. If you are the primary caregiver you must find a way to continue your duties. Constant sadness will overwhelm you. Get the help you need. Stages of Dealing with Anticipatory GriefGrief doesn’t follow a set pattern. I wish I could tell you that you will experience one emotion for two weeks another one for a month, and the rest for two more weeks, but grief doesn’t have a timetable. What I experienced and what you experience will be totally different.One of the best ways to deal with anticipatory grief is to accept the emotions as normal. You have experienced a loss. It is normal to be sad, angry, or any number of other emotions. Allow yourself to experience these emotions, but also find ways to deal with them constructively as mentioned above. Don’t let anyone make you feel guilty for the emotions you have. Not even your siblings will experience the same set of circumstances, history, and emotions as you do. Some people won’t understand. Don’t expect them to. But don’t transfer your anger to them just because they can’t help you. Recognize where the feelings are coming from. Get mad at the disease. And get the help you need. Get a FREE Copy of Our Ebook!
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