(LifeWire) - After Janie Tucker's* 79-year-old mother attacked Tucker's husband with the car keys in February 2006, Tucker knew it was time for her mother to move out of their Denison, Texas, home. Tucker thought her mom -- who has Alzheimer's disease -- should go into an assisted living facility. But one of Tucker's two sisters disagreed.
After years of family fighting over where their mom should live, the severity of her symptoms and financial issues, she's now settled into a long-term care facility. But the turmoil has torn the sisters apart. "It's definitely put a big rift in the family," says Tucker, who preferred not to use her real name.
The Tuckers are one of nearly 5 million American families caring for a relative diagnosed with Alzheimer's, the most common form of dementia, which is both progressive and fatal.
Family conflict most often occurs in the early to middle stages of dementia. A common scenario is a group of siblings challenging one brother or sister. Typical points of contention include charges of poor communication, manipulation, neglect and isolation of the relative with dementia.
In the majority of cases, adult children -- not spouses -- are the primary caregivers. They shoulder a heavy emotional and often financial burden.
One-fourth of caregivers devote 40 hours a week to their loved one. Often in addition to holding down a full-time job, a caregiver spends time giving medications, feeding, bathing, dressing and keeping track of their loved one. The stress of juggling all of these responsibilities can weigh heavily on the caregiver, which is part of the reason why as many as 80% of them experience depression.
To avoid conflict and burnout, relatives should hold a family meeting immediately after an Alzheimer's diagnosis, says Beth Kallmyer, director of client services for the Alzheimer's Association. Out-of-towners can participate by phone and the person with Alzheimer's should be included, if appropriate. Several questions must be addressed:
- What are the patient's current needs and safety considerations?
Address the extent to which he or she can continue to manage daily activities and handle finances alone.
- Where will the family member reside?
Determine at what point assisted living or nursing homes will be considered.
- How will each person contribute?
Designate a point person for each task, depending on skills and availability.
- When and how will future decisions be made?
Be sure to consult the person with Alzheimer's.
- How will any concerns be addressed?
A regular phone conference may be helpful.
- How will the care be financed?
Savings, insurance policies, long-term care plans, and government programs like disability insurance, Medicare and Medicaid are all options.
Families who take care of legal matters as early as possible can make circumstances a little less stressful. Important documents and decisions include:
- Living Will
A living will documents the patient's wishes about end-of-life medical issues, including artificial life support.
- Power of Attorney
This allows the person with Alzheimer's to designate someone to make financial decisions when they are no longer competent.
- Power of Attorney for Health Care
This lets the patient appoint someone to make health care decisions; powers of attorney can be revoked by the patient.
This formal designation gives an appointed person the legal right to make decisions about personal and financial issues. In most states, guardianship is determined by a court evaluator and a psychiatrist. The process can take up to a year and is rarely used except in cases of severe family conflict or when the patient refuses help.
Living will and power of attorney documents are available online, but experts recommend consulting an attorney who specializes in elder care before making any decisions. At a time when family members may be emotionally drained, involving a third party can help alleviate tension.
*Names have been changed at the request of the interviewee.
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