If ever there’s a group of people who suffer deeply from unearned guilt it’s caregivers. Whether you’re the parent of a vulnerable adult, an adult child of aging parents or the spouse of a vulnerable adult, you are bound to have your “if only” times where you are sucked into the quicksand of guilt. The reality is that most things you could have done differently wouldn’t have made a huge difference overall. Even if another approach would have made a difference, you can’t go back. Staying mired in guilt is counterproductive for you as well as your care receiver.
While some reasons caregivers feel guilty are unique to their situation, many are commonly shared in caregiving. Below, I’ve listed four causes of unearned guilt that most caregivers share, along with some ideas that I hope will help you look at your situation more realistically:
- You feel trapped and resentful: When people feel helplessly trapped into a way of life that they don’t choose and may not feel equipped for, it’s natural for them to feel angry. However, anger doesn’t seem like an appropriate reaction when you know that the person you’re caring for didn’t choose to be so vulnerable, either. Therefore, rather than find an appropriate way to express anger, many turn it into the self-punishment of resentment. Other – better – caregivers don’t have negative thoughts like you do, right?
Realty check: Wrong. Most caregivers will, at least occasionally, have these feelings. You are not alone and you are not a bad person. You are a human being who’d like some control over your own life. You didn’t ask to be put in a situation where you have little chance to work on fulfilling even the simplest of your own dreams. Yet, the situation presented itself and you stepped up to the plate.
Your loved one needs you, but he or she needs you mentally and physically healthy. What you need to do for yourself and your loved one is network and investigate some ways to give yourself some relief. Your situation may not change enough for you to chase the dreams you once had, but you deserve some respite time when you aren’t totally responsible for the welfare of another human being. Whether you hire help, get involved with adult day care or find volunteers through an organization, you need and deserve some breaks from the constant demands and challenge of caring for someone who isn’t well.
- You want to do things on your own that you used to do together: This is especially hard for spouses who have ill and impaired partners. You and your husband loved to golf. Now he can’t golf, but you have women friends who invite you to play. You often say no, but occasionally you give in and go along with the group. However, when you do so, you feel guilty because you’re doing something your spouse would have enjoyed. The vicious cycle of needing relief and feeling guilty about doing something for yourself ruins a potentially healing reprieve from your daily grind.
Reality Check: Your spouse, even if he or she acts resentful because of current circumstances, would want you to take care of yourself. You will be a better, less resentful caregiver if you can do something that you enjoy. If your chosen activity happens to be a hobby that your sick spouse once enjoyed, it doesn’t matter. Keeping some balance in your life is good for both of you.
The bulk of caregiving advice in print and online is centered on helping adult children cope with caring for their aging parents. Much of that advice is interchangeable for any caregiver. However, well spouses have specific needs often left unexpressed and unmet. If you could benefit from specific interaction with other well spouses, you might want to try the Well Spouse Association at www.wellspouse.org. The organization is a success simply because it follows the proven format that people who are in situations like ours understand what we are going through.
- Guilt for not spending enough quality time with your loved one: It’s interesting to note that even caregivers who live with their care receivers often feel that they aren’t spending enough quality time with their loved one. They are so overwhelmed with the daily drudgery of chores – and for some, making a living, as well – that there’s never enough time for everything that needs to be done. Guilt then erodes any feeling of accomplishment.
Reality check: Remember that you are just one person. You do your best and that needs to be good enough. If you truly feel you are ignoring your loved one, try to hire some help with housework if you can afford it. If you can’t, remember people are more important than having a show-worthy house, but there are just some things you must do. You needn’t feel guilty for simply making sure that your vulnerable loved one is safe while you go about needed tasks. This is real life.
- Guilt for wanting it all over with: You’ve been watching your loved one, generally a parent or elderly spouse, suffer. He or she will not ever regain an acceptable level of health. Pain relief is used with some success, yet your loved one still lives with chronic pain – emotional and physical. You do everything you can think of to make his or her life better but you know it’s a downward spiral and sometimes you just wish that for both of you it could all end.
Reality check: Thoughts are just thoughts. They are not actions. If you have thoughts occasionally that you wish it could all end, you are simply being human. Your emotional stores are in short supply. If the person is terminal and eventually dies, do not go back and blame yourself for feeling some relief that it’s over. Grief and relief can coexist. There is no need for guilt for having these human thoughts, past or present.
Since you are a caregiver, you will most likely find other “reasons” to stir up guilt. You were short tempered yesterday when your loved one acted out. You forgot his or her favorite food while you were shopping. You spent too much time on the phone complaining to a friend, forgetting that your loved one may understand what you’re saying even though he or she seems unresponsive. The list goes on.
You can make the list very long if you try. However, it’s healthier for you and your loved one to take steps to alleviate your guilty feelings. Find a support group online if you can’t go to one in person. Try to go out on occasion and do what you really want to do. Most of all, understand that while you aren’t perfect, you will know in your soul if you are doing what you realistically can do. If you are able to improve on a true flaw in your caregiving practices, then try to do so. Otherwise let the guilt go and get on with making life as good as possible for both you and your care receiver.
Carol Bradley Bursack is a veteran family caregiver who spent more than two decades caring for a total of seven elders. She is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. Bradley Bursack is also a contributor to several books on caregiving and dementia, and is passionate about preserving the dignity of elders. Her website is www.mindingourelders.com. Follow Carol on Twitter @mindingourelder and on Facebook at Minding Our Elders.