A "family caregiver" may be a spouse, child, other relative or friend of an older adult who needs assistance. For example, you are a family caregiver if you provide periodic rides to activities, help with shopping, coordinate care services, advocate for an older adult with health care providers or make sure an older adult receives services at an assisted living or nursing home facility. In all cases, you are an older adult’s link to the world of a completely independent life that he or she once had.
Whether it is your first or tenth comment offering help or addressing a concern, it is important to always be sensitive as to how your comments may be perceived. The best thing to do is to place yourself in your older adult’s shoes, and think about how you might react. An offer of help, expression of concern for his or her health or ability to do self-care, or suggestion to consider a life change such as housing can trigger feelings of insecurity or resentment.
Acknowledging the need for help can cause an older adult to grieve for the loss of complete independence, youth or better health. Whether due to age, chronic illness or a sudden illness, accepting help is likely not a welcome step.
Responses from an older adult can be affected by many things: the closeness or openness of your past relationship; the older adult’s outlook on aging, general willingness to accept help or personal awareness of health or self-care issues; or even your financial or other connections to the older adult’s property.
Simple comments can be signals of major life changes for an older adult. Expressions such as "This place has stairs. Maybe a single-level apartment/house would be better for you?" or "I can drive to you the grocery store. You don’t need to be driving." indicate to the older adult that he or she may have to leave home or give up driving. No one wants to acknowledge deterioration of his or her own health or ability to do activities. This is why it is recommended to not make these comments randomly but rather to take time to have a heartfelt discussion.
When is it time to have this discussion? If an older adult’s personal safety or health are concerns, these issues need to be addressed immediately.
However, if possible, try to discuss the older adult’s feelings about health, housing and care preferences before they become urgent issues. This way, when the issues come up, you can better respect the older adult’s wishes. A way to bring up this discussion is when you sit down to review and complete Advance Directives forms.
Immediate family members, like spouses and children, tend to take a "parental approach" to caregiving. Other relatives, friends and neighbors, depending on the closeness of the past relationship, may be less parental in their approach but have a greater risk of being viewed as intruding on personal privacy.
In all cases, the older adult’s dignity and desire to remain independent need to be respected. Caregiving for an adult is not the same as caregiving for a child. Older adults should never be treated like children.
Older adults have strong self-identities and preferences that children have yet to establish and usually more life experience than their caregivers. The older adult parent will always be "mom" or "dad," and a spouse will always be a "husband" or "wife." Relationships have histories that don’t go away with the need for care.
If the relationship was good, the older adult will want to maintain the previous relationship as much the caregiver. On the other hand, if the relationship had conflict and poor communication, it is unrealistic to think that these elements of the relationship will go away. In fact, the stresses of a family caregiving situation may make a poor relationship worse.
Sometimes if a relationship has been bad, being a family caregiver with frequent contact is not a good idea. Turn to others – siblings, a friend of the older adult or professionals – who possibly may be better caregivers. A bad family caregiving situation can make both people miserable and may lead to verbal or even physical abuse.
Even in good family caregiving situations, there are certain cases where outside help may be best. If possible, it is recommended to turn to professional resources for help with hygiene care, such as bathing and toileting assistance, for an older adult. Hygiene care is the most intrusive to personal privacy. Outside help with hygiene care may allow an older adult to maintain his or her pride and better retain spousal, parental and friend relationships with family caregivers.
If outside help isn’t possible, there are techniques a family caregiver may learn to use which offer an older adult more privacy.
The key to a good family caregiving relationship is open communication, mutual respect, a willingness to recognize personal limitations and asking for outside help when needed.
Are You Frozen In Time?
Family caregiving of an older adult offers opportunities for learning and gratitude; greater depths of joy, compassion and grief; exploration of a relationship unlike any other; and experiences that help one prioritize what is important and develop a broader vision of life.
By focusing on the frustration, helplessness or anger that can be part of family caregiving, a family caregiver can miss all of the opportunities of the situation. Negative feelings and fears can cause a family caregiver to be "frozen in time," dropping out of his or her personal life to do caregiving.
Think back … have you given up personal interests and activities? Did you used to do photography, take long walks in the park, attend theatre or have dinner with friends? Is your life now consumed with scheduling medical appointments and other care, constant worry about your older adult’s health, resentment toward health care and insurance providers or anger about others’ unwillingness to see caregiving issues the way you do?
Have your holidays changed because of family caregiving needs? Is your older adult in a nursing home or assisted living facility, or poor health prevents him or her from being involved as before? Do you feel guilt about enjoying the holidays or other activities that the older adult used to be part of?
The advise of many family caregivers is to "live in the moment and enjoy what is in front of you." Regrets about what has changed or could have been serve no purpose.
Also, get back to having a personal life. One-by-one add the interests and activities you left behind. Your friends and family members may comment about how good it is to do things with you again or to see your becoming involved in a hobby. This may surprise you. Family caregivers often don’t realize how frozen in time they are until making an effort to get "unfrozen."
Persistence pays in continuing to take steps back into your life because it is easy to fall back into old patterns. Keep a calendar of your activities to make sure not too much time passes in between doing things for yourself.
As you make your way back to your life, there are lots of rewards along the way. Not only do you get to enjoy some old or new interests, your reduced stress level will be reflected in your family caregiving situation. What used to be problems can become learning experiences and even joyful.
As you see deterioration of your older adult due to age or health problems and dependency increases, some feelings of grief and sadness are normal. With a healthy perspective on family caregiving, you can replace feelings of sadness with appreciation for what an older adult can still do – and what you can do together.
The goal is to bask in the feeling of being needed, not begrudge the time and effort family caregiving takes. This can only happen if you recognize your limitations, seek and accept help and maintain your own life and interests. Good family caregiving is defined by both self-care and care for the older adult.