Ethelinn Block thought her father's strange behavior was just signs of grief over the loss of his wife, and that he would return to normal in time. But after three years, Arthur's decline became alarming. He forgot to pay bills and keep appointments; he misplaced things. His business faltered to the point that his children had to close it down. As loss piled upon loss, eventually the family had to take away his car, too.
Those were the first signs, "but the word Alzheimer's never came into the picture," remembers Block, 51, of Mesa, Arizona. Oftentimes when her teenage son stopped by to visit his grandfather, he discovered there was no food in the house. Arthur wouldn't even get out of bed.
"We tried to deny it, but finally we realized something was terribly wrong," Block says, Three years ago, she moved her father into her own home. Then she took him to the Mayo Clinic in Scottsdale, where the diagnosis came back as early-stage Alzheimer's disease. Although Block has three siblings, only one brother initially stepped forward to help.
The low point came three years ago when she became physically ill with simultaneous stress-related jaw, elbow, and knee problems. "I was out of my mind," Block says. "I decided I couldn't take it anymore. I sold my house and we moved closer to my siblings across town. It has made all the difference."
Making the decision
According to a 1997 survey by the National Alliance for Caregiving (NAC) and the American Association of Retired Persons (AARP), one-fifth of care recipients live in the same household as their caregivers. The impetus for merging households may come from an elder's declining health or inability to drive or may be sparked by such things as a change in the neighborhood or depressing memories after the loss of a spouse. Household chores and maintenance may become too demanding, or the parent may need a change in climate, help with finances, more socializing, or better access to medical care or a place of worship.
For many families, experts say, moving a parent into one's home is a cultural or filial expectation and not a sacrifice. Especially when there are grandchildren in the same household, the rewards of a multigeneration household can be immeasurable.
Although living together is often the most ideal or convenient situation in the long run, many families make this decision on short notice -- such as after a hospital discharge -- and then discover that more careful planning would have mitigated some unexpected drawbacks, such as an elder's loss of independence and familiar community.
Seattle mental health counselor Wendy Lustbader says an adult child often takes in a parent so as to return in good measure the love and care the parent bestowed in raising the child. However, such a move is not for everyone; sometimes appropriate adjustments just cannot be made on either side. She cites factors you should consider when making the decision to bring a parent into your home:
- Expense. Will you have to cut back or give up employment to provide care?
- Accessibility. Does your home require modifications such as wheelchair-accessible entryways?
- Space. Is there enough room to ensure privacy for all family members?
- Relationships. Does your spouse or partner get along with your parent, or will this move cause intolerable strain?
- Children. Are your children old enough to appreciate a grandparent moving in, or will they feel distressed by the loss of personal attention?
- Lifestyle. Are your lifestyles and values compatible?
- Respite. Can you rely on family or community resources to give you a break from caregiving?
- Family dynamics. Is there a history of conflict or disagreement that may flare up once everyone is living together? Will you feel like a child again, and not an adult with a separate life?
- Expectations. Do you expect your parent to help with household chores, finances and/or child care, when in fact he or she may not be willing or able to do so?
- Medical condition. Do you know what amount of caregiving will be needed now and in the future? Are you willing and able to provide it?
Successfully moving a parent into your home requires effective communication among all family members. It also requires building support systems. Care professionals advise holding family meetings to first gain cooperation from everyone in the household, then set ground rules for sharing household chores, using the bathroom, and maintaining privacy.
Second, check out community-based support systems for the caregiver that may focus on either medical or personal care. These include respite care -- for instance, placing the loved one in an assisted living facility for a few days' relief; adult daycare services, where the elder can go a few days a week for activities and a noon meal; and in-home health care services such as help with bathing and dressing, medication monitoring, meal preparation, and errands.
With willingness and time, caregivers say, caring for a parent at home is one of the most rewarding experiences possible. The friendship, stimulation, and care given by families can rarely be replaced.
The rewards of parent care
Today Ethelinn Block manages her father's medications, toasts his bagels just the way he likes them, takes his shirts to the laundry, and even gets up in the wee hours to comfort him when he cannot sleep. Arthur, now 78, has nine grandchildren and is involved in family activities from art shows to soccer games. He also has a set of household chores that he loves to do, like rolling coins to take to the bank.
"At first I was upset, because this should have been a time in my life to spend with my son," says Block. "But there are so many positives in having my father with us. He is safe and comfortable. He is surrounded by his books and portraits of my mother. He whistles, he laughs, he feels loved and respected. Every night he says, 'Thank you,' and I know this is the least I can do for him.
"My father was there for me in college and through my divorce, and is always there for my son, who is learning patience, compassion, and acceptance. He is appreciative of everything we do -- even my cooking! I ask you, is there any other way this could be?"
Administration on Aging - http://www.aoa.gov
Provides local resources and links on caregiving.
Alzheimer's Association - 800/272-3900 http://www.alz.org
Can put adult children in touch with support groups and resources in their area.
American Association of Retired Persons (AARP) http://www.aarp.org/caregive Lists resources and types of assistance available to caregivers.
Children of Aging Parents - 800/227-7294 Provides referrals for attorneys, medical insurance, respite care, and other resources.
Children of Aging Parents A different organization, is a joint project of the National Institute on Aging and the Administration on Aging.
215/945-6900 - http://www.aoa.dhhs.gov/aoa/dir/77.html
Family Caregiver Alliance - http://www.caregiver.org
Provides resources and support to caregivers of brain-impaired adults.
National Association of Private Geriatric Care Managers - 520/881-8008
National Family Caregivers Association - http://www.nfcacares.org
Provides news and resources for American's 25 million caregivers.
National Organization For Empowering Caregivers, www.nofec.org offers educational materials, support, referrals, programs and the Empowering Caregivers web site at www.care-givers.com
National Association for Home Care - http://www.nahc.org
Gives information on how to choose a home care provider.
Visiting Nurse Association of America - http://www.vnaa.org
Donna Cohen and Carl Eisdorfer, Caring for Your Aging Parents: A Planning and Action Guide. New York: Jeremy P. Tarcher/Putnam, 1995.
Virginia Morris, How to Care for Aging Parents: A Complete Guide. New York: Workman Publishing, 1996.
Claire Berman, Caring for Yourself While Caring for Your Aging Parents: How to Help, How to Survive, Henry Holt and Company, 1996.