Making Caregiving Decisions and Answering Questions

Making tough decisions sometimes creates more questions than answers.

More than 65 million people, nearly a third of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend in any given year. 

That encompasses an astounding number of decisions to be made and questions to answer. You might feel honored or privileged to care for an aging spouse or relative, but the pressure can be enormous. 

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“Even when we have had the appropriate conversations with our loved one about his or her wishes under certain definable circumstances, life is rarely so neat that we are presented with clear choices,” says eldercare consultant Carol Bradley Bursack. “For this reason, caregivers often need to make tough decisions under sometimes murky conditions.”

Questions and decisions can involve medical, legal, and financial planning. They can involve how much help someone wants or needs, where they want to receive it, and what they can do on their own. They can involve how much the person you’re taking care of wants to be involved in her own care. It can be a delicate balance. 

Although there is no easy way to take care of someone, you can try and keep the process from becoming overwhelming by learning everything you can about taking care of a loved one. Don’t wait for a crisis, which forces your hand and makes participation in decisions by the person affected very difficult. 

"There's a continuum of ways people become caregivers. Often a loved one suffers a stroke, accident or fall or a chronic condition worsens, and people are thrust into a situation. But few plan for it as well as they could," says Leah Eskenazi, director of operations and planning for the Family Caregiver Alliance: National Center on Caregiving. 

Often adult children don’t realize how much help their parents need until they actually get together and see how much their abilities have diminished. Maybe it’s forgetfulness or a house that’s not at clean as it once was. 

Such signs are a cue that you need to have a conversation with your parents, or other loved ones, about all the medications they’re taking, and the contact information for all their doctors. 

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Then you can get into questions about medical and financial planning such as living wills and durable power of attorney. 

You also need to know where all their important papers are kept and have signed release forms allowing you access to their private medical information should it become necessary. 

Ideally, you want what caregiving experts call “stay in place,” meaning that your loved ones remain at home for as long as possible with a level of caregiving that amounts to assisted living. 

Unless dementia or another incapacitating condition has diminished or removed their decision-making abilities, you’re going to be asked a lot of questions. They have the right to answers. 

“While many services exist to help older people and adults with disabilities, the person who needs help may see the service as an invasion of privacy, a loss of independence or a waste of money,” says the Family Caregiver Alliance. 

Many older adults also don’t want strangers in their home, don’t want to consider going to an adult day program, or think about moving into a senior housing community. Those are all real concerns that, despite their resistance, they will probably agree to talk about if you have information they can digest. 

The Caregiver Action Network (CAN), the nation’s leading caregiver organization, offers a “family caregiver toolbox” that covers the issues and questions involved in caretaking and can refer you to a number of organizations and agencies that can answer some of the most common questions that come up. 

CAN even offers information on finding caregiving resources in your local area, such as public health and social service agencies that can offer transportation and other aids. 

Many experts agree that by the time you approach age 40 and a loved one is around 70, you should have had the talk about issues so many families want to avoid, says CAN. 

“Topics such as living and financial choices, health, driving, dating and end of life can be perplexing.”

Resources

• Caregiver.com
• The Caregiver Initiative
• Family Caregiver Alliance
• National Alliance for Caregiving
• Caregiver Action Network
• Well Spouse Association 
• ARCH National Respite Network and Resource Center

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