Q.  My dad had a stroke four years ago and my mother has been caring for him at home ever since.  His condition is fairly stable, but I’m very concerned about Mom’s emotional state.  I asked her the other day if she thought she might be depressed.  She said she didn’t think so.  She thought she was just sad that Dad isn’t who he used to be, and when she thinks about the future, it looks pretty bleak.  Do you have suggestions on how I can help her?

A.  Your mother may be depressed.  It is also possible that she is experiencing Preparatory Grief.  I often call depression and grief “The Evil Twins of Caregiving” because the symptoms are often so similar that it can be hard to tell the difference.  If your mother is having difficulty functioning, if she doesn’t want to get out of bed, if she cannot think of anything in her life that brings her pleasure, doesn’t have anything to look forward to, and if she is experiencing suicidal thoughts, please get her to a doctor.  She may be suffering from clinical depression.  Clinical depression is a medical condition that results in a mental disorder.  If she is clinically depressed she will need medication.   However, if her condition is not that severe, she may be going through the process of Preparatory Grief.

The following is an excerpt from an article I wrote recently for Caregiver Solutions, a Canadian magazine for caregivers.  I hope this will be helpful.

Preparatory Grief

Preparatory Grief is the process we go through when we are losing a loved one due to a progressive, degenerative, and ultimate fatal disease. It is different from the grief people experience when a loved one dies suddenly, in that it requires constant adjustments to ongoing changes and losses.

My mother cared for my dad for six years following his debilitating stroke. One of the ways she coped with her grief was to disengage her emotional monitor and write letters to me in which she described everything she was experiencing and exactly how she felt about it. In one letter, written about four years after Dad’s first stroke, she said, “I think when a person has a sick husband or wife, it can feel as if you’ve been alone for the same number of years that person was sick. I have said many times that my husband died on October 30, 1993. We just haven’t gotten around to burying him yet.”

When she wrote this, she was grieving the loss of the man my father had been before his stroke. She was grieving the relationship they once had and would never have again. She was grieving the life she had expected to be sharing with him at that point in their marriage, and she was grieving the losses she knew were still ahead.

According to Dr. Virginia Tyler, a grief counselor with Evergreen Hospice in Albany, Oregon, it is not unusual for persons experiencing Preparatory Grief to experience both physical and emotional upset:

Common physical responses experienced by caregivers during Preparatory Grief:

• 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

During Preparatory Grief, many caregivers experience Denial, Anger, Guilt and Sadness before reaching a point of acceptance:

Denial

• Tendency to not see the loved one’s condition realistically
• Hoping that changes will not be progressive or permanent
• Reluctance to recognize decline and advance to a new level of appropriate care

Anger:

• Toward the disease and the care receiver
• With the medical community & community services
• Toward friends and family members who don’t offer help or support, and/or say or do unhelpful or hurtful things

Guilt

• For having negative thoughts and feelings toward the care receiver
• Over getting angry and/or impatient
• Wishing his or her suffering would end

Sadness:

• Feeling an overwhelming sense of loss for your former life
• Knowing that the future you had planned is no longer a possibility
• Regretting what your loved one is missing as his/her illness progresses

Acceptance comes when the caregiver is able to develop a realistic understanding and expectation of the situation. It does not always come easy. Acceptance 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
• Even though you don’t want things to be the way they are, you recognize that you are powerless over certain aspects of your loved one’s condition
• It is possible to experience personal, emotional, and spiritual growth while caring for a terminally ill loved one
• Recognize that 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

As a disease progresses, you may witness changes in your loved one’s personality. Nothing will make this process easy or painless, but here are five suggestions that might help you manage your feelings of frustration as you go through the caregiving experience and Preparatory Grief:

1. Separate the disease from the person. Often caregivers mistakenly think their loved one is being difficult on purpose. Pain and dementia are two factors that can dramatically alter a person’s behavior. When in pain, someone who has always been cheerful and optimistic can become demanding and sour. A stroke survivor who’s been active and self-reliant his entire life may suddenly act moody and lazy. Stroke survivors, persons with Alzheimer’s and another dementia-related diseases frequently become stubborn and combative. If you are witnessing these types of changes, talk to the doctor. Find out if the challenging behavior is typically associated with the disease. If it is, then blaming the disease rather than your loved one may save you both a lot of negative emotional energy.
2. Focus on a happy memory. Try to recapture the positive feelings you had for your care receiver when you shared a specific positive experience. Remember how you felt toward that person in that moment. And then when you are feeling exceptionally angry, upset, or sad, pull that memory out and focus on trying 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 before the illness or accident, and if you don’t have a bank 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. Focus on the positive feelings you had about yourself in that situation and use that experience to help you deal with new challenges.
3. Meet your loved one where he or she is right now. Dorothy Tucker, a nurse who worked in nursing homes and on Alzheimer’s units for 30 years said she thought the main difference between family caregivers and professional caregivers is that professional caregivers do not grieve the loss of who their patients used to be. She said, “As a nurse on an Alzheimer’s unit, I didn’t feel 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.” Good memories are precious. Hold them in your heart, and understand that Alzheimer’s or another dementia-related disease may have permanently stolen those experiences from your loved one’s mind. Blaming the disease instead of the care receiver may make it a lot easier on both of you.
4. Join a support group. Caring for an aged, chronically ill, or disabled loved one is one of the most incredibly difficult and generous acts any of us will ever perform on behalf of another. People who have not done this work cannot possibly understand the physical demands or the emotional stress involved. Joining a caregiver support group can provide you with a safe place to express all your emotions. You will learn that having negative and angry feelings doesn’t make you a bad person. When you give yourself permission to be human, it relieves a lot of pressure.
5. Create a plan for self care. When we are in the process of losing someone we love, it creates an aching, gaping hole in our heart. The pain inflicted by this emotional wound can be as intense as any physical injury. No one else has the same relationship with your loved one as you do, and no one will ever fully be able to understand your sorrow. Your loss and your path to healing is totally unique.

Although there are no shortcuts or one-size-fits all solutions to going through Preparatory Grief, it will help if you can accept the fact that self-care is not selfish. 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 eventually create a new life after caregiving.