What, Me, a Caregiver?

I recently received an email from the daughter of one of my clients outlining the numerous ways that she and her siblings were supporting their mother since Mom’s recent move to a nursing home.  I replied to the daughter with praise for her and her siblings’ involvement and advocacy efforts on Mom’s behalf.  I know they are very busy children.  This was, in part, the daughter’s response to my note:  “Yes, my Mom is lucky, but we are extremely lucky to have her as our Mom.”

Reading her words brought to mind the many families I have worked with in my long social work career who would have been unable to express such a sentiment.  They did not view their caregiving role as something that they were doing out of love and respect for the elder.  They were forced into a caregiving role out of necessity or a sense of obligation, not prompted by affection or desire.  Caregiving was their burden, their ‘cross to bear.’  And they hated every minute of it.

Not all children are raised in a home like that of Ward and June Cleaver of the old television show Leave It To Beaver.  Not all families are headed by responsible parents who show love and respect to each other and to their families.  A parent may have been overly controlling, addicted to alcohol or drugs, abusive, neglectful or severely mentally ill.  A parent may have ‘played favorites,’ showering one child with affection while ignoring the needs of another.  A parent may have abandoned his or her family long ago, only to now, in the parent’s later years, need care and support from the long-forgotten children.  A parent may have disapproved of a child’s actions or lifestyle and ‘disowned’ the child years ago.

When a parent places his or her needs first while raising a child or when mental illness or addiction affects the parent’s abilities to care for others, it can be difficult for that child to bond with his or her parent.  The child fails to develop the level of affection for the parent that would prompt the child to willingly step into the caregiving role years later.

Caregiving requires personal sacrifice, even when an adult child truly loves his or her parent.  When that sacrifice is coupled with resentment, anger or ill feelings it can negatively affect the elder, the caregiver, and those in both the elder’s and caregiver’s circle of support.  A child may be asked to pay for care and services for a parent who carelessly spent their life savings.  The need to provide care for a parent may interfere with the caregiver’s own life plans such as going back to college, continuing to work full time, with the ability to retire or with the freedom to travel, pursue hobbies or continue an established social routine.   If the child caregiver already has his or her own physical or emotional problems, possibly as the result of a challenging relationship with a parent, the need to attend to the needs of that parent can place additional stress on the child caregiver.

I have also found that an additional concern for the reluctant caregiver is the lack of opportunity to openly express his or her true feelings to others about the caregiving role for fear of being judged.  How will others react if the burdened caregiver tells others that he or she resents having to care for the parent?  Society, in general, tends to place moral and ethical expectations on children to care for their parents when needed.  Other family members, neighbors or friends may look negatively upon a child who does not willingly step up to provide care for a parent. Religious groups may also place a layer of spiritual responsibility and expectations for caregiving by family members which may result in feelings of guilt by the child who is unable to provide care that is motivated by love or affection for the older person.

When love is not the motiving factor in caring for an elder, how can caregivers cope with the emotions and the challenges they are facing?  What options are there for relief for the caregiver or for the sharing of responsibilities?  What if you realize that you just can’t do what is being asked or expected of you?

First, I think being honest with yourself is a good starting place. Acknowledging the difficult past that you have had with the elder will help you to recognize the areas, both emotional and practical, that may interfere with your role as caregiver.  Know that it’s ‘normal’ and acceptable to feel confused, angry or resentful in such situations.  Find someone with whom you can talk confidentially and openly about your feelings – a friend, family member, clergy person, physician or counselor – someone who can be supportive and who will not judge you or criticize you for your feelings.

Learn what your parent’s needs are now and what they are anticipated to be. Seek out information about your parent’s health conditions from any medical staff who may already be involved in your parent’s situation.  (Note that you may need to have a valid Health Care Power of Attorney document signed by your parent that will allow others to speak with you about your parent’s health care needs.)  Learn about local resources, including caregiver support groups, available through your area Office for Older Adults or through disease-specific organizations such as the Alzheimer’s Association or the American Diabetes Association.  Some organizations offer limited in-home help at low or no cost to the elder or caregiver.

If possible, involve your parent in the decision making process. Be realistic with the elder and others in their circle of support about what you can and cannot do, what you will and will not do.  Agreeing to do too much in the beginning may only lead to your increased resentment and later feelings of being trapped with no way out.  Be honest with yourself and others about the amount of time and energy you have to devote to the care of the elder.  Make your limitations clear to others who may have unrealistic expectations of what you will do in your caregiving role.  What you can do for a short period of time may not be sustainable for months or years.

Don’t try to do this alone. Ask for help from others and, again, be clear about who is doing what and when they are doing it.  Build in for yourself time away from caregiving, whether it is simply an hour to read a chapter in a book, to take a walk or to attend religious services. Other family, friends, neighbors or hired caregivers may be available and willing to give you needed time away from the situation.  If not, there may be help from local organizations and agencies for respite care.

If there are other children or close relatives, hold routine family meetings, even if only by conference call.  If things are getting harder for you, whether physically or emotionally, be honest with yourself and others.  The additional stress you feel will likely affect you and the elder in negative ways, so it is best to address the stressors before they reach the boiling point.

Know your options and have a well-thought-out ‘emergency’ plan in place. Recognize that the emergency may not be with the elder, it may be with you, the caregiver, so plan as best you can for all likely urgent care matters.  Local, state and federal programs may offer in-home care including nursing, therapy, home delivered meals, minor home repair and other social services. The hiring of a care coordinator or geriatric care manager may be helpful in providing advice and support to the caregiver when care needs change.

Talk with an elder law attorney, insurance agent and financial planner, if appropriate, to ensure that your parent has his or her long term planning paperwork in place.  This will help to reduce the stress of last-minute decision making during a crisis.

Pay attention to your feelings and level of stress. Keeping a journal is a good way to release negative emotion and to track if there are certain times of day or particular activities that are the triggers for a rise in stress levels.  If negative patterns are noted, look for new ways to deal with those situations such as having someone else take responsibility for the activity or trying the activity at a different time of day.  If you become so angry or resentful that you are at risk of inflicting physical or emotional harm on yourself or the elder, serious consideration should be given to whether you should continue in the caregiving role or make alternative arrangements.  You have the right to say, “I can’t do this anymore.”

Even when your efforts at caregiving are going reasonably well, know that previously established patterns of behavior will surface on occasion and be prepared. Whether you find an acceptable way to respond verbally in those moments or simply step away for a few minutes to compose yourself and return to the discussion, if you are able to control your responses, the behaviors just might change.  Or at least your response to them can be different, better, less stressful for you.  Just as conditions and care needs change, so can relationships change.

Even when the caregiver’s prior relationship with the older person was not a loving one, there is still a chance for healing in the relationship during the period of caregiving.  Having an open dialogue about past hurts and the desire to start anew may be a good point at which to begin.  You may need to have the conversation more than once in order for the parent to understand and respond to what you are saying.  You may need the help of a trained professional to mediate and facilitate.  If you can avoid placing blame on either party, practice the art of forgiveness and recognize that this could be a new phase in the relationship, it is possible for healing to take place.  It takes a lot of hard emotional work, but it can be done.  The resulting relationship may not be perfect, but it may be better than it has been in years.

By Terry Fries-Maloy, MSW, LISW

Posted in Articles, Articles: Elders and Their Caregivers.