When Barbara T. made her usual Sunday visit to her mother, she was alarmed to see her 80-year-old mom with a black eye and large bruises on her arm. She had tripped on the stairs. Fortunately, she was not seriously injured, at least not this time. It wasn’t the first time she had fallen and, she confessed, she was having trouble with her balance. She also had high blood pressure and the doctor said she may have had more than one TIA, also known as a mini-stroke. She had lived alone since her husband died three years before, and she was having trouble managing the upkeep of the family home. Clearly, Barbara thought, something needed to change. Her mother needed to live in a place without stairs, and needed some help with grocery shopping, transportation and other tasks.
In this column and the next, we’ll explore the range of residential options for caregiving. In column 1, we’ll look at options for someone with fewer care needs, like Barbara’s mother; in column 2, we’ll explore options for those with more demanding health conditions or those with Alzheimer’s or another dementia.
The most typical situation is one in which adult children are assisting aging parents, and that’s the example we’ll focus on here. But the information applies to anyone—spouse, grandparent, friend, aunt, sibling, even yourself—who may no longer be able to live independently.
Open discussions: The family meeting
A good first step–before a crisis arises–is to hold family meetings with your parent, spouse, children, siblings and other key people so everyone can share their views and help decide how best to proceed.
Since finances play an important role in long-term care, an honest discussion about financial resources should be part of the meeting. Families are rich in historical experiences, and family dynamics (“Mom always liked you best…”) will come into play in your decision-making. If the meeting is likely to be difficult, an outside facilitator such as a social worker, religious leader, or geriatric care manager might be helpful. Expectations should be clear to everyone involved.
Key consideration: What level of care is needed?
As your parent gets older, his or her care needs will change, and in most cases become more challenging. Consulting with a geriatric care manager or knowledgeable social worker may be helpful as you consider current and future needs. As time goes by, changes in your parent’s medical or cognitive condition may require a further change in living arrangements.
Questions to think about:
- Does your parent need assistance throughout the day? Who’s available to provide this?
- Is your parent’s memory impaired?
- Which activities of daily living (such as food preparation, bathing, toileting) can your parent can do independently?
- If needed, what is your comfort level for providing personal care such as bathing?
- Evaluate your own health, physical abilities, job and family demands to help decide if you are able to provide care for your parent.
- What services, such as in-home care, adult day services and transportation, are available to your parent?
- Can your parent get appropriate medical care in your community?
What are your options?
Moving your parent into your home is certainly one option, but you and your family might want to consider other living arrangements as well. The type of housing you choose will largely depend on four important factors:
- Your parent’s care needs
- The location of potential housing and proximity to family members, and
- Services and support available in your parent’s or your community.
The following list outlines different types of living arrangements that may be appropriate for someone who doesn’t need extensive care or assistance. Every community offers different choices. Remember, Medicare does not usually cover long-term care expenses or services.
- Living independently at home: Most people prefer to remain in their own homes, and sometimes that’s possible—with some help. Resources in the community such as meal delivery service, “friendly visitors,” housekeeping, home health aides, transportation, or other in-home assistance might provide enough support so your parent can remain at home, in familiar surroundings. The home must be safe, with good lighting, clear spaces to walk, no stairs. Tech innovations, such as automatic pill dispensers, movement monitors or webcams, can be useful.A move to a smaller apartment, condominium or one-story house in their community or yours might also be feasible, with help and check-ins from family. Sharing an apartment or house with a friend or relative could be another possibility.
- A newer option, called Naturally Occurring Retirement Communities, NORCs or Villages, offers members—generally a group of older people who live in the same geographic area—services such as home repair, transportation and social/educational activities. There’s a fee to join and the organization is directed by volunteers and/or paid staff. This is a growing national movement, and for some people, it’s enough support to allow them to remain in their homes.
- Retirement Community: Independent retirement communities usually offer individual apartments in a multi-unit setting, with group meals, transportation, housekeeping and organized social activities. Residents are free to come and go as they please, yet have the benefits of a larger group setting. Amenities and prices vary from place to place. Some offer access to a nurse or nurse practitioner. As care needs increase, additional services (e.g., help with laundry, bathing) often can be added for a fee. Visit several communities before making your decision.
- Continuing Care Retirement Communities (CCRCs–sometimes called “Life Care”) offer independent, assisted and skilled nursing facilities all in one location. If a person’s health deteriorates, a disruptive move to a new community isn’t necessary. These communities generally require a substantial entrance fee, often paid for with the sale of a home.
When your parent moves in with you
If living with family is the best option for someone who needs care, there are several issues to consider before making the move.
Changes in family roles. You and your family may decide that the best place for your parent is in your home. While this can be a very rewarding experience on many levels, living with your parent may lead to some tension caused by a shift in family roles. A once-independent parent may become more dependent. You’ll probably have less time for your spouse and for yourself. You might have to adjust your work schedule, and your children may need to help with household responsibilities, including care of their grandparent. These role changes can be big adjustments for everyone.
Changes in your house. There must be enough space and a floor plan that is suitable for an older adult who might have mobility or vision problems. Some homes require special adaptations to make them safe. Home health agencies and/or Area Agencies on Aging may help you do a home assessment and recommend modifications (such as grab bars and ramps). Some families even build an addition to their home or lease an “accessory apartment” (or “accessory dwelling unit”)—a fully equipped modular unit that can be temporarily or permanently set up on your property.
Changes in lifestyle. You and your parent probably have different lifestyles. Sleeping cycles, food preferences, noise level, social calendars, interests, and activities may need adjustments in order to guarantee a happy transition. If care needs become heavy, try to arrange for some time off from caregiving duties (“respite”) and enlist the help of family members, friends, a paid aide or a home care agency.
Finances. You may become more involved in your parent’s personal finances, including paying bills and monitoring and managing accounts. To make financial issues more manageable:
- Agree upon how much, if any, payment your parent will provide towards their living expenses. Will they pay for rent, food and other costs?
- Openly discuss financial arrangements with siblings.
- Consider preparing a formal legal document called a Personal Care Agreement describing any payment to you from your parent for accommodations or your caregiving services.
- Be sure legal documents are in place, such as Durable Powers of Attorney and Advance Directives.
- Evaluate whether you need to make adjustments to your current work schedule.
- If you will reduce your work hours, determine the implications for your own financial picture, your job, health insurance, and Social Security and retirement benefits.
Managing a Move
Packing and moving out of a house is a significant chore for anybody, but for the older adult who has decades’ worth of memories and possessions, moving can be a major emotional challenge.
In some communities, there are specialized companies that will, for a fee, help organize a senior’s move to a new location and arrange to sell or give away unneeded furniture and possessions. They will also help pack and unpack. Even if outside services are used, however, in most families the adult children play key roles in this task. Beginning to “de-clutter” early helps.
Your parent will need time to adjust to his or her new living environment and role in your family. Open communication, patience and support will help make this transition as smooth as possible.
More Information & Resources
Locate Area Agencies on Aging and other resources
National Association of Professional Geriatric Care Managers
3275 West Ina Road, Ste. 130
Tucson, AZ 85741
About Family Caregiver Alliance
National Center on Caregiving
785 Market Street, Suite 750
San Francisco, CA 94103
Family Caregiver Alliance (FCA) offers an extensive online library of free educational materials for caregivers. The publications, webinars and videos offer families the kind of straightforward, practical help they need as they care for relatives with chronic or disabling health conditions.
Family Care Navigator is FCA’s online directory of resources for caregivers in all 50 states. It includes information on government health and disability programs, legal resources, disease-specific organizations and more.
Helpful Publications from Family Caregiver Alliance:
- Caregiving With Your Siblings
- Community Care Options
- Downsizing Your Home: A Checklist
- Hiring In-Home Help
- Holding a Family Meeting
- Legal Planning for Incapacity
- Home Away from Home
- Personal Care Agreements
Founded in 1977, Family Caregiver Alliance was the first community-based nonprofit organization in the U.S. created to address the needs of caregivers. FCA and its National Center on Caregiving are nationally and internationally recognized for pioneering programs—information, education, research and advocacy—that support and sustain the important work of families and friends caring for loved ones with chronic, disabling health conditions. Visit www.caregiver.org or call (800) 445-8106 for more information.