Caregivers Need Care Too
When a person is dying, he or she is not the only one affected, not the only one who has lost the lifestyle that was formerly shared, not the only one who has been dealt a devastating blow. The family member who is the main caregiver suffers as well.
The health care literature says caregiving is satisfying work, because it is an expression of love for someone who is important to you. That is only part of the story. Caregiving can also be difficult. It involves not only the task of doing, but also the task of coping, figuring out creative solutions and working at how to keep one’s head above water.
If the illness is prolonged, a normal caregiver may also feel other feelings – tied down, isolated, lonely, frustrated, sad, pushed beyond physical endurance.
Then there are those feelings of guilt for sometimes acting in a resentful, angry way, feeling sorry for yourself about being robbed of your own life and questioning what you have done to deserve such misery – and then feeling guilty for feeling any of those things.
As the patient grows weaker, the caregiver takes over. Whatever the patient can no longer do, they do. At the beginning both were horrified together, but gradually they may emotionally move apart because they are on separate journeys through grief.
“How is he/she doing?” caregivers are often asked, but at some point they will wonder why no one ever asks about them. It is even common to feel as though they are losing their own identity and no longer exist.
It is normal to feel angry with God, which does not mean a person has lost their faith. It just means the caregiver is exhausted and longs to be rescued. It is normal to feel angry at the doctors, which does not mean they are no longer trusted. It just means desperately wanting a cure and a longing to have the old life back.
It is normal to feel angry at other family members who may not be adequately sharing the responsibility of caregiving, which does not mean they are no longer loved. It just means help is needed.
A common phrase for this is compassion fatigue. It is a normal part of the process and does not mean the patient is no longer loved nor cared about. What it does mean is that caregivers must make a commitment to care about themselves as well and understand asking for help is not a weakness. It is a necessity.
Some people are better at asking for help than others, but family and friends need to be as alert to the wellbeing of the caregiver as they are to the needs of the patient.
Help with proper nutrition – casseroles in the freezer, healthy snacks and often staying with the patient while the caregiver gets out of the house to share a meal with a friend.
Other things for which to be alert are adequate sleep because lack of rest is a major contributor to depression and exhaustion and regular exercise because it is a guaranteed stress reducer.
If the caregiver is not helped to manage their stress level, they too may become physically ill. Headaches, ulcers, gastrointestinal problems, muscle spasms are common.
A therapist or a support group can be a lifesaver for some. A caregiver needs a safe place where he or she will not be judged to voice the confusion of feelings that begins to run rampant. If they do not have a place to be honest about their own feelings, they will eventually become re-active – wanting to escape or lashing out in anger.
The bottom line is caregivers need care too. It is not selfish. It is surviving.
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Comments
Cheryl, caregiving, even when you love someone, has its challenges. You speak of the mean words from your parents, and even though you know they are ill, those words still hurt. Perhaps it will help you to understand that behind angry words is always fear. They may be ill, they are also afraid. You might try asking in a caring voice next time they dump on you, “What are you scared of?”
At the same time, when someone is abusing you with words, it is your job to step back – and maybe out. I don’t know what your parents resources are, but I would strongly enoourage you to find a therapist and/or support group where you will find people who understand, have been there and who can help you look at ways to care for yourself.
It may be time to bring in other help to lighten your load. While your parents will surely protest loud and long and angrily, it is healthy and right for you to say something like, “I feel sad that you feel as you do, but it is not okay for you to use hurtful, hateful words, and I will be using other people to care for you because I don’t want to be angry with you and resent you.”
What we sometimes overlook is that we teach people how to treat us. While you can’t change your parents, take a look at what changes you can make to take better care for yourself. Hang in there. Charlotte
I agree that family members need to be vigilant in watching for signs that the primary family caregiver is not getting so frustrated with others that she/he moves into a resentment state and then will not ask for help. This state is out of shear burnout and truly does not reflect how the caregiver feels about less involved family members most of the time.
Linda…thanks for your thoughts. As I read them I am aware that not only do other family members who are not the primary caregiver need to be thoughtful in assisting, but the caregivers themselves need to KNOW what you said – that their feelings of resentment in no way reflects on the love they feel for their family member….the feelings simply serve as a red flag to them that they are exhausted and need help themselves. I know many caregivers who are tired and resentful, who then feel guilty about how they “feel”.
Thank you for this article. You have described me perfectly. As a caregiver, I go at a hectic pace and it isn’t until I feel like I could explode, or break down in tears that I realize I need a break. One of the hardest things for me to deal with is the mean words from a parent. I tell myself they are ill, but when you must deal with it over and over it is hard to swallow. How does a person know when doing the right thing is to help out or to step back and let them live their life as they choose?