Caregiving is Hard; I Miss My Life

"I want to help my Mom in every way that I can—it’s hard to see her struggle with everyday activities. But even when I work myself to the point of exhaustion, I feel like I haven’t done enough. Hiring outside help is so expensive that we can only afford eight hours
of extra care per week. I need more than eight hours just to feel free—just to be with myself and rejuvenate.

I miss the relationship I had with my Mom, when I could really be myself and she could really be herself. Now everything is so
intertwined that it’s hard for us to see each other clearly. I want to be friends again. I really miss that."

-Caregiver for mother with Multiple Sclerosis

As primary caregiver, it may seem impossible to take care of one’s self, given lack of time and/or energy. It may even feel selfish. However, you must remember that we can only take as good care of others as we do of ourselves. This chapter will offer information to help you be aware of and deal with the stress and strain of caregiving.

Caregivers often feel lonely and isolated, which, in turn, increases feelings of resentment and guilt. Common complaints include sleep disturbance, lack of appetite, upset stomach, tight chest, backaches, headaches, exhaustion, trouble concentrating, difficulty making decisions, and being argumentative, impatient, easily upset, and critical.

We have divided caregiver dynamics into three parts: feeling, dealing, and healing. Through acknowledging and understanding our own feelings, we can start dealing. With the process of dealing comes the healing.

FEELING

At any given time a caregiver will experience a wide range of emotions from anger to relief. Events and circumstances may even precipitate emotions. It is very important to acknowledge and validate your feelings, even those that seem disturbing to you. Most likely these feelings are normal.

The following are some emotions that you may feel at some time:

  • ANGER: Anger can be aimed in many directions. It may be directed toward the one you are caring for, your children, your spouse, or even towards people you don’t know. It is imperative to deal with these feelings because anger can make any situation more stressful and can even lead to physical illnesses.
  • GRIEF: Grief can ensue from losing your independence, the life you had (including friendships), and losing the person you knew and loved.
  • SHAME: Shame can come from feeling like you are not doing enough or being embarrassed about the senior’s behavior. You may even be ashamed of your own self-image, because you are focusing so much on the care receiver that you do not allow time to take care of yourself.
  • POWERLESSNESS: Feeling powerless to change or control the situation, and/or your feelings about it.
  • SELF PITY: It is common to feel sorry for one’s self. However, work to find a way of forming a more positive mindset. For example, instead of saying “Why me?”, say “I am doing the best I can to care for my loved one.”
  • GUILT: Guilt can often come from feeling that you are not doing enough. Have realistic expectations and maintain balance. You can only do so much, and that is okay.

DEALING

Dealing is how you manage the stress and feelings that come with caregiving. It is acknowledging your emotional and physical state so that you can take action. There are both positive and negative techniques in coping with a caregiving
situation.

Positive methods for coping are:

  • COMMUNICATION: Communicate your needs and wants. It is NOT a sign of weakness or selfishness.
  • AWARENESS: Be aware of your emotional and physical symptoms such as moodiness, insomnia, change in weight gain/loss, illness, etc.
  • LAUGHTER: There is scientific evidence that laughter releases stress and lowers blood pressure.
  • MEDITATION: Meditation can help relieve stress by relaxing the body and mind and is not hard to do. The numerous benefits can help in many aspects of life.
  • PHYSICAL EXERCISE: Exercise can give you more energy and help to relieve stress. Even a 15-minute walk can help.
  • NUTRITIOUS DIET: Choose a variety of healthy foods. Eating regularly gives you the energy you need to maintain your health and continue in your important role as caregiver.

Negative mthods for coping are:

  • SELF-MEDICATING: Relying on excessive drug or alcohol intake to calm your nerves or to deal with your feelings.
  • DENIAL AND/OR AVOIDANCE: Instead of validating your feelings and the reality of the situation, you pretend that the feelings don’t exist or that the situation is not what it is.
  • ADDICTIONS: Any habit that is done in excess and for immediate gratification without consideration of consequences. Shopping, sex, and overeating are some common addictions, in addition to drugs and alcohol.

HEALING

Healing is a stage of opportunity for the caregiver. The process of healing can provide the caregiver with hope and self-growth. However, the healing process is not an easy one and can be an ongoing process. Beneficial channels to start the healing process are:

  • Clergy—Spiritual guidance
  • Support groups—Sharing ideas and experiences can help you feel less isolated. These groups offer opportunities to receive help and to extend help to others.
  • Learning opportunities—Attending workshops and reading literature on caregiving can promote confidence.
  • Compassion—Finding outlets to help others can be very healing.
  • Continue a healthy lifestyle—Include healthy eating habits, physical exercise, and meditation.