Most people become caregivers due to circumstance; their circumstance as well as the family member in need. They stepped up to the task because someone had to and they had strength and compassion within their soul.
As a caregiver you may have experienced several emotions throughout the journey. Sadness, frustration, resentment, anger, you may feel as though you are prepared to handle all of them, but you may have overlooked guilt. Guilt is a common emotion, though it may come up suddenly and unexpectedly for many caregivers.
Many times caregivers did not bargain for the feelings that emerge as time moves on and the demands of caregiving settle into the daily routines. All kind of emotions arise during your journey as a caregiver.
It can be very comforting to talk to other caregivers and hearing them express the same feelings of frustrations. There is a wide range of feelings from compassion to feeling trapped. One emotion leads to another and before you know it guilt lies heavy within your heart. Exhaustion seeps into your soul, but sleep is evasive.
As you give and give, and get and get, still sometimes your role feels overwhelming. The need is so great most days and you can never get it all done. You feel like as much as you give, it isn’t enough - it’s never enough. Yet remember, that everything you do makes a difference. No effort is too small. Everything you do matters more than you know.
Feeling guilty. It really creates a huge weight on your shoulder.
Guilt is an unwelcome and often constant companion in caregiving. Guilt can propel you to be the best you can be… or it can immobilize you.There is no easy remedy for guilt. No magic formula we can use to erase it from our being. At best, it is an ongoing process, one that we must practice every day so that you can successfully eradicate guilt from our lives. You have to look in the mirror and confidently tell yourselves that you do or have done the best you were able to do. Given the tools you have to work with, you are using or used your best judgment, and made caregiving decisions that you truly feel or felt were in the best interest of all concerned.
Recognize the feeling of guilt. Unrecognized guilt eats at your soul.
I have heard many times from caregivers that they place on themselves an unattainable goal. Deep inside they begin to believe that they are responsible for the life or death of our loved one.
The caregivers feel it's their obligation to make these years the happiest. But none of you has that power. When caregivers have expectations that are unrealistic, that's when the guilt comes in .
There are many reasons caregivers feel guilty, including ambivalence with their new role, resentment toward family members for not helping more, conflict with their loved one, and anger over all the things they have lost, like vacations with your family, or favorite hobbies, or free time.
When you do more and more for your loved one, he/she may keep asking for more, making you feel as though you’re not doing enough. This all adds to the guilt and anger.
Common reason for caregiver guilt
- You have a picture of the “Ideal You” with values you hold and how you relate to yourself and others. Guilt often arises when there’s a mismatch between your day-to-day choices and the choices the “Ideal You” would have made.
- The “Ideal You” may be a parent who attends all of the kids’ soccer games. Miss a game to take your dad to the doctor, and you think you’re falling short.
You may have needs out of line with this “Ideal You.”
- You may believe that your own needs are insignificant, compared to the needs of your sick loved one. You then feel guilty when you even recognize your needs, much less act upon them. A mother may ask herself, “How can I go out for a walk with my kids when my mother is at home in pain?” (A hint for this mother: she can give more to her mother with an open heart when she takes good care of herself.)
- You may have feelings misaligned with the “Ideal You.” of your loved one’s illness? You might even feel angry with your loved one for getting sick! Recognizing those feelings can produce a healthy dose of guilt. Yes, you may even feel guilty about feeling guilty.
Guilt can be a cruel and controlling emotion. It rarely benefits anyone - especially a caregiver who is trying to do the right thing.
It is not unusual for caregivers to get caught up in a vicious cycle of anger and guilt. They feel guilty for losing their tempers and for saying hateful things. They experience feelings of guilt because they resent the time, attention, energy, and money it takes to care for someone who can no longer care for him/herself, for not being able to keep promises, for family conflicts, and for sometimes wishing their loved one would just die.
If the caregiver did not have a great relationship with a parent or a spouse and is now responsible for managing that person’s care, it’s quite common for the caregiver to feel guilty because he/she doesn’t have loving feelings toward the care receiver.
People feel guilt because they think that somehow there's something they could, might, should, would have done, but the perfect ending never happens, no matter how well prepared a family is.
We think we ought to be able to control things. So there’s an extra layer of guilt if it doesn’t go the way we want or expect.
An unlived life?
A less mentioned situation exists when the caregiver suddenly feels the loss of an unlived life. He or she is forced into focusing on another person whose life is changing, perhaps drastically. As the caregiver assumes the burden of caring for an-other and ignores his or her own needs and wishes, the possibilities for his or her own life may seem diminished. The caregiver may be filled with a fierce need to live. Imagine the potential for feeling guilt in this situation!
Moving on with Life
Moving on with your life while your loved one’s life slows down is difficult. However, it is wise for a caregiver to continue on with life, as much as possible, from the onset of the disease. A pattern is then established with the care receiver, and he does not expect otherwise.
They want to do the right thing, and they are putting pressure on themselves to put their care receiver's needs first. They think they should always be loving, patient and kind. But the truth is, we are human, and when our needs are not met, it becomes increasingly difficult to meet the needs of someone who cannot take care of him or herself.
Perfection is not a realistic expectation. Give yourself permission to be human. Accept that fact that relationships in the very best of circumstances are difficult. (And when you are caring for someone who can no longer care for him/herself, you are not in the best of circumstances.) You will get angry. You will feel resentful, and sometimes you will feel very sorry for yourself. It’s okay to wallow once in a while. Allow yourself to feel what you are feeling. Acknowledge it. Accept it. Deal with it, and move on.
Whether guilt is being imposed on you by others, or whether it is self-imposed, it is important to remember that it often leads to feelings of resentment and depression.
Before you accept the responsibility or guilt for some action or inaction, examine your motives, your physical and emotional condition and other circumstances around the event.
For caregivers, painful feelings - such as guilt, sadness and anger are like any other pain. It’s your body’s way of saying, “Pay attention.” Just as the pain of a burned finger pulls your hand from the stove, so, too, guilt guides your actions and optimizes your health.
Guilt vs Regret
Caregivers often confuse guilt with regret. Remember that guilt is the feeling we experience when we intentionally cause physical or emotional harm to another person. Regret is different, in that it is a feeling of sadness or disappointment over something that has happened or been done. We regret a loss or a missed opportunity.
It's perfectly normal and acceptable to regret how your care receiver's life and your life has changed as a result of an illness or injury. It's natural to feel tremendous sadness and disappointment over the progression of a disease, but it is not healthy for you to stop living your life and accept the responsibility for your care receiver's condition. You didn't cause it. You can't change it. If your body is still healthy, if you can still pursue a career, if you can enjoy being with family and friends - feel grateful, not guilty.
If you’re the kind of person prone to guilt, learn to manage guilt so that guilt serves you rather than imprisons you. Here are some suggestions for managing your caregiver guilt:
- Recognize the feeling of guilt
Unrecognized guilt eats at your soul. Name it; look at the monster under the bed.
- Identify other feelings :
Often, there are feelings under the feeling of guilt. Name those, too. For example, say to yourself: “I hate to admit this to myself, but I’m resentful that Dad’s illness changed all of our lives.” Once you put it into words, you will have a new perspective. You will also be reminding yourself of how fortunate you are to have what it takes to take care of loved one.”
- Be compassionate with yourself:
Cloudy moods, like cloudy days, come and go. There’s no one way a caregiver should feel. When you give yourself permission to have any feeling, and recognize that your feelings don’t control your actions, your guilt will subside.
- Look for the cause of the guilt:
What is the mismatch between this “Ideal You” and the real you? Do you have an unmet need? Do you need to change your actions so that they align with your values?
Meet your needs. Needs are not bad or good; they just are. If you need some time alone, find someone to be with your loved one.
- Change your behavior to fit your values:
For example, Clara felt guilty because her friend was in the hospital and she didn’t send a card. Her guilt propelled her to buy some beautiful blank cards to make it easier for her to drop a note the next time.
Call a friend and say, “I’m going through a hard time. Do you have a few minutes just to listen?” Have a family meeting and say, “Our lives have been a lot different since grandma got sick. I’m spending more time with her. Let’s figure out together how we’ll get everything done.”
- Revisit and reinvent the “Ideal You”:
You made the best choices based on your resources and knowledge at the time. As you look to the future, you can create a refined vision of the “Ideal You.” What legacy do you want to leave? What values do you hold dear? Then, when you wake up in the morning and put on your clothes, imagine dressing the “Ideal You.” Let this reinvented “Ideal You” make those moment-to-moment choices that create your legacy.
- Understand that you will be a more effective caregiver when you care for the caregiver first. Loved ones neither want nor expect selfless servants. As a caregiver, when you care for yourself, you increase and improve your own caring. Yes, guilt is part of caregiving, but this guilt can help you become the caregiver you and your loved one want you to be.
Give Yourselves a Much Deserved Break
Imagine how great it would be to enjoy a holiday, more time with your kids or just some time to relax where you can recharge your batteries, knowing that your loved one is being looked after and cared for as you care for them yourself.
Respite provides caregivers a break from their daily responsibilities. Respite can cover a wide range of services based upon the unique needs of the caregiver.
Respite might mean:
- Medical or social adult day care for the loved one or friend
- A short-term stay in a nursing home or assisted living facility for the loved one or friend
- A home health aide or home health companion
- Respite for the caregiver might be:
- Giving the caregiver a short break for a doctor’s appointment or to go shopping
- Allowing the caregiver the opportunity to nap, bathe, or otherwise rejuvenate
- A break to attend a church service or see a movie
- Taking a much needed vacation
A Caregiver's Self - Care Recipe
- Self Knowledge
- Self - Examination
- Self - Care Strategy
- Plan for Re - entering a normal life
- I'm responsible for my task, God is responsible for the outcomes.
- I'm not God
- I Value Small Victories
- Who I am is as important to the mission as what I do.
- Their pain is not my pain
- I Remember to Care for My Spirit, Emotions and Body so that there will be something left to give.
- Compassion Fatigue - Caregiver Burnout is not a character flaw.