More Help and Less Advice for Family Caregivers

Family caregivers receive too much advice and not enough help, and the advice can be wearisome.

Having made that observation, we must recognize that many relatives, friends and neighbors are uninformed about the nature of diseases like Alzheimer’s and other forms of dementia. They mean well, but they are not really aware of the demands on caregivers, or the kind of help that caregivers need. When these well-intentioned individuals offer suggestions, they feel satisfied that they have made a contribution.

Sometimes good advice for one situation is inappropriate for another. Therefore, hands on experience may be necessary to help assess the situation.

Consider the following three illustrations of family members offering advice, when the caregiver wishes that they would offer help instead. This is an effort to create awareness, not to make persons feel guilty for not helping. Anyone can overlook an opportunity to be helpful, without having evil intentions.

(1) The sister inquires from her brother, the caregiver, about their father. She learns that some daily living activities are now difficult for the old man, and that it has become more challenging for the caregiver to get his cooperation.

She advises her brother, “Tell him ...” “Make him ..." The sister does not understand that the father's brain usually does not register what he is told, and that there is no way to make him brush his teeth or button his shirt. Instead of advising her brother to do the impossible, why doesn't she offer to spend a couple of hours interacting with him and their father, seeing firsthand what he is talking about and try to help?

(2) Health advocates in the family encourage the caregiver to continue her morning walks, and spirituality advocates suggest that she finds someone to care for her mother while she attends church. What would it take for one of them to offer, “Would you like me to watch her one morning while you take a long walk [or while you attend church]?”

(3) “Make sure you take of yourself,” some family members say. “The caregiver needs to take a break.” What would help the caregiver carry out their advice is an offer to bring lunch, or take over her lunch preparations once a week, so that for one day, she could spend less hours in the kitchen.

There are other short term and long term caregivers beside those associated with dementia and elderly care. The following conditions also warrant in-home care:

• Chronic illnesses like Parkinson’s, cancer and heart disease;
• Children with developmental disabilities;
• Post-surgery recovery and rehabilitation;
• Complicated pregnancies or postpartum recovery;
• Physical disabilities in all ages.

Caregivers, no matter the situations can always use a helping hand—anyway from feeding a child to offering respite care; and the best preparation for help in these varied situations is some basic training. The American Council for Health Education and Development proposes that training provides the basis for judging the care which is administered to loved ones. It also increases the chances that advice, when given, would be pertinent.

^{FREE Family Caregiver Online Training offers 40 hours of interactive training, of which 25 is dedicated to Alzheimer’s and Dementia. It also covers other topics ranging from Emergency First Aid to End of Life Care.}

^{Alzheimer’s and Dementia Care Center offers 12 free e-learning workshops. Topics include Know the 10 Signs, Tips from the Latest Research, Effective Communication Strategies and Understanding and Responding to Dementia-Related Behavior.}

Caregivers’ instructions include soliciting help and many of them have in mind who their helpers will be. They are disappointed when the individuals they select are unavailable to help, or the help does not meet their expectations. This is good reason for other individuals to lessen the caregivers’ burdens by offering assistance. Here are a few suggestions for helpers to consider:

Offer to help.

Do not make a general offer like, “Call me if you need me.” Be specific:

“I have some free time this Sunday. I can take our mother for a drive while you enjoy some time alone.”

Listen without interrupting.

Give the caregiver a chance to vent frustrations, fears or whatever is the issue. Pay attention. Validate the concerns. Do not offer advice if it is not solicited; and if it is, weigh your words carefully before you say them.

Call and visit regularly.

Communicate regularly and drop by often, not only to sit. If there are chores to be done—dishes to wash or floors to sweep or mop—offer to help in a caring manner; do not make the caregiver feel incompetent.

Encourage the caregiver.

Let the caregiver know that by assuming the role of caregiver, he or she is providing valuable service to the entire family. Say thanks for services rendered. Give honest commendation and ask, "How may I help" when you're tempted to offer advice.

Many family caregivers are on duty 24/7. Their responsibility includes medical appointments, shopping and related errands. Instead of advice on time management and stress-free tactics, caregivers appreciate any form of help which affords them time for leisure activities like:

• Meeting up with friends for dinner, a movie or window-shopping;
• Attending a workshop that has to do with something other than being a caregiver;
• Sitting alone on a bench in the park, watching the children play;
• Reasonable time alone for reflection and resetting;
• Sleeping in late one morning or just opening the curtains to watch the sunrise.

Dr. Linda Ercoli, PH.D of UCLA Health reports that "when caregivers are happy with their social support, they feel less stressed. This in turn can benefit the people they are caring for. When a caregiver is supported ... there is a reduced rate of admission to nursing homes. . . In other words, the caregiver can tolerate the situation better."