Understanding and Coping with Caregiver Grief
Caregiver grief is complicated process that starts long before a loved one dies. It is called Preparatory Grief, and it’s what we experience as we have to adapt and adjust to the ongoing losses and changes that occur as a result of a progressive and degenerative disease. It’s a different process from the grief process we go through after a loved one dies.
There’s no way to measure which type of grief is more difficult, because whether you are grieving the gradual and continual losses that occur over an extended period of time, or you’re grieving a loved one’s actual death, you will hurt as much as it is humanly possible to hurt.
My mother often said, “My husband died on October 30, 1993. We just haven’t gotten around to burying him yet.” She believed that when a person was caring for a sick husband or wife, it can feel as if you’ve been alone for the same number of years that person was sick.
It’s not unusual for persons experiencing Preparatory Grief to also experience physical ailments such as:
- Difficulty sleeping, lack of energy, irritability
- Change in appetite: weight gain or loss
- Physical ailments such as headaches, stomachaches, intestinal problems, back and shoulder pain
Many caregivers also struggle with feelings of denial, anger, guilt and sadness before reaching a point of acceptance.
When People are in Denial They Tend to:
- Not see the loved one’s condition realistically
- Hope that changes will not be progressive or permanent
- Resist stepping up to a new level of appropriate care
They experience Anger Toward:
- Their care receiver and the disease
- The medical community
- Friends and family members who don’t offer help or support
They Feel Guilty When They:
- Have negative thoughts and feelings toward the care receiver
- Get impatient with their care receiver and lose their tempers
- Wish their loved one’s suffering would end
They Feel Sad About:
- The loss of their former life
- All of the things their loved one is missing out on as his/her illness progresses
- A future that looks a very different from what they had planned
Reaching a Point of Acceptance is not easy. It takes time as well as a lot of mental and emotional effort. It helps to realize that:
- It is difficult to maintain balance in a constantly changing situation
- You didn’t cause your loved one’s illness, and you cannot control it, change it or fix it
- You can experience personal, emotional, and spiritual growth while caring for a someone who is terminally ill
How you cope will be different than anyone else, depending on:
- Your relationship with your care receiver before the illness
- The severity and duration of the illness
- What other things are going on in your life, including your health, family, work, and friends
- How you cope with loss and change
When a loved one stops acting lovable, the caregiver’s stress increases
If you witness changes in your loved one’s personality as a disease progresses, you might find the following suggestions will help you manage your feelings of frustration:
- Separate the disease from the person. Pain and dementia are two factors that can dramatically alter a person’s behavior. When someone who has always been cheerful and optimistic is suffering with chronic pain, it isn’t unusual for that person to become demanding, disagreeable and difficult to please. Stroke survivors, persons with Alzheimer’s and other dementia-related diseases frequently become stubborn and combative.Talk to your care receiver’s doctor to find out if the challenging behavior is typically associated with the disease. If it is, then try blaming the disease. It will be easier for both of you if you can be angry at the disease rather than your loved one.
- Focus on a happy memory. Try to remember how you felt when you shared a particularly good experience with your care receiver. Then when you’re having a bad day and you’re feeling angry, upset, or sad, pull that memory out and try to replace your current negative mental energy with the positive feelings you recall from that particular event.If you didn’t have a good relationship, and if you don’t have a lot of happy memories from which you can draw, then think of a time that your care receiver presented you with a difficult challenge that you handled well. Congratulate yourself for being a good person and for doing the right thing.
- Meet your loved one where he or she is right now. My friend Dorothy Tucker said, “As a nurse on an Alzheimer’s unit, I never felt sad about how the resident had changed. I never mourned who they had been 10 or 15 years earlier. I just loved them for who they were when I was with them.”
- Hold on to precious memories – even if Alzheimer’s has stolen all of your loved one’s memories, you can hold on to the experiences that made your relationship special for both of you. If you can blame the disease rather than your care receiver, it may make the process a little less painful.
- Join a support group. People who have never been a caregiver simply cannot understand the physical demands or identify with the emotional stress involved. A caregiver support group can provide you with a safe place to uncork your emotions and express everything you are feeling. There will be other people there who will identify with your experiences and won’t judge you harshly for having negative feelings. Giving yourself permission to be human will relieve a lot of pressure.
- Understand that your path to healing is totally unique. Losing someone you love creates an aching, gaping hole in your heart. This emotional pain can be as intense as any physical wound. Accept that no one else has the same relationship with your loved one as you do, and it will be impossible for them to every fully understand your loss or your sorrow.
Although there are no shortcuts or one-size-fits all solutions to going through Preparatory Grief, the process might be a little less stressful if you can cut yourself some slack. Recognize that caregiving one of the most difficult jobs you will ever do. In order to survive the emotional stress, you will need to make self-care a priority.
If you can accept that self-care is not selfish, and if you will take care of your body and pay attention to your mental, emotional and spiritual needs, you will be in a better position to help your loved one now. And then, when your role as a caregiver comes to an end, you will go through a different type of grief, and eventually you will come to a place of acceptance and peace. At that point you will be in a position to create a well-deserved new life for yourself beyond caregiving.
To read Elaine’s article about coping with grief after death, click on this link: Beyond Caregiving – Moving Through Grief to Gratitude
Link to: http://www.griswoldhomecare.com/blog/beyond-caregiving-grief-to-gratitude/